Wednesday, November 6, 2013

Generic Hydrocortisone

Does your HC look like this?
If yes, switch to a different brand. ASAP.

In The Nightmare Revisited, I made the bold claim that I am allergic to the generic hydrocortisone. It was one of the five things that triggered my April Crisis. This has generated much discussion through various forums. Thus, I would like to write out my experience in a single post that can be quickly referenced. As it turns out, this issue is much more prevalent than I first realized. Many of us have been suffering.

For those who are new to my journey, I was diagnosed with Adrenal Insufficiency in 2005 and immediately started on the brand name Cortef. I responded quite well to the treatment and only ended up in the ER once for vomiting and once for a horrible case of the hives. In 2008, my family moved to a new state and I got a new endocrinologist (Endo 2). My health insurance also forced me off of Cortef and onto the generic hydrocortisone (HC) due to the cheaper cost.

Suddenly, it felt as if my medicine stopped working. My anxiety returned. My depression cropped back up. I started to withdraw from society. I was slipping back into the pre-diagnosis Amber. Endo 2 immediately started me on fludrocortisone (FC) and changed my official diagnosis to Addison's Disease. But even with the addition of FC, my treatment seemed less effective. This led us to experiment with other types of Glucocorticoid steroids such as prednisone and dexamethasone (dex). Eventually, we decided on treatment that involved a small night dose of dex with a small afternoon "booster" dose of HC. This was my treatment plan for over three years.

Doctors are trained that the generic is medically equivalent to the brand name. No one thought to question the timing of my problems and how it correlated perfectly to when I was switched off of Cortef.

I moved states (again) and got a new endo (again). Endo 3 and I started changing around my ratio of dex and HC to more closely match the Circadian Rhythm of cortisol. This was based off of my research, not hers. I ended up firing Endo 3 after she proved she could not manage my Addison's. Sometime around this point (Fall 2011), I started to unintentionally lose weight. Constant headaches began. Persistent nausea arrived.


Fun fact? I had actually doubled my meds the day before because I wanted to avoid a crisis. It did not help. I found myself in the ER two weeks later despite stress dosing. My experiences were not agreeing with the expected outcome. I would feel worse over time with stress dosing, not better. One of our assumptions had to be wrong.

Generic hydrocortisone is not medically equivalent to Cortef.

Inactive Ingredients
Brand Name: Cortef Generic: Qualitest Generic: West Ward*  Generic: Greenstone**
Calcium Stearate
Silicon Dioxide
Microcrystalline Cellulose
Calcium Stearate
Corn Starch
Lactose
Sodium Starch Glycolate
Corn Starch
Lactose
Magnesium Stearate
Lactose Anhydrous
Lactose
Mineral Oil
Microcrystalline Cellulose
Silicon Dioxide Colloidal
Mineral Oil
Sorbic Acid
Sodium Lauryl Sulfate
Magnesium Stearate
Sorbic Acid
Sucrose
Sodium Starch Glycolate
Sucrose


Generic: Glades Generic: CorePharma  Generic: Lineage  Generic: Vensun
Lactose NF
Lactose
Lactose
Lactose Monohydrate
Pregelatinized Corn Starch
Microcrystalline Cellulos
Corn Starch
Cellulose, Microcrystalline
Microcrystalline Cellulose NF
Croscarmellose Sodium
Microcrystalline Cellulose
Silicon Dioxide
Croscarmellose Sodium NF
Sodium Starch Glycolate Type A Potato
Croscarmellose Sodium
Magnesium Stearate
Sodium Starch Glycolate NF
Magnesium Stearate
Sodium Starch Glycolate Type A Potato
Magnesium Stearate NF
Corn Starch Magnesium Stearate

*Note on the WestWard Generic: As of November 2013, WestWard is no longer producing their generic HC.

**Note on the Greenstone Generic: If you notice, the ingredients in the generic HC for Greenstone are identical to the ingredients in the brand name HC Cortef. The pills are even stamped as "Cortef." If for your insurance or your pharmacy refuses to give you the brand name Cortef, ask for Greenstone. It is the same brand name medicine sold at the generic price.

My mom was the one who actually discovered this. She was the one that remembered my health decline of 2008 and how it lined up with the timing of stopping Cortef. At first, no one believed her. We were all trained that the generic is medically equivalent to the brand name.

The next time my prescription was filled, she asked the pharmacist to order Cortef. I would pay the extra. Mom was determined to run a simple experiment. And guess what? Her experiment worked. She discovered something that 14 different specialists, 5 really scary tests, and 30 doctors appointments had missed.

I now refuse to take Qualitest Generic Hydrocortisone.

My Issues on Generic Qualitest

  • I felt sicker after I would increase my dose. Standard protocol dictates increasing our dose up to three times the normal amount in times of sickness. Yet I kept ending up in the ER when I was taking pro-active steps to avoid it. That was not logical.
  • My weight was dropping back to my pre-diagnosis size, even with an increased steroid dose. More steroids normally means more weight. I was taking more during times of physical stress and illness, yet I could not maintain that healthy weight. The extra pills seemed to do nothing.
  • 20-30 minutes after every pill I swallowed, I would have a reaction. Again, this was not logical. HC normally begins to peak in the blood stream around this time. I was supposed to gain energy, not lose it. These episodes would last 1-3 hours and correlated perfectly to the timing of my medicine. I wouldn't be able to see, or speak! I could barely move. Every day. Three times a day.
  • Constant headache. Constant miserable headache.
  • Constant nausea. Zofran was a friend. But I only took it when I was scared that I would actually vomit. Most of the time, I just suffered through the miserable feeling.
  • Ready for the scariest fact?
    • From 2005-2008, I was in the ER/urgent care twice in four years (0.50 times/year).
    • From 2009-2013, I was in the ER/urgent care nine times in five years (2.25 times/year).
That generic HC might look cheaper on paper, but it's a hell of a lot more expensive when you factor in all of those medical bills. I was slowly being poisoned with every generic Qualitest pill I swallowed. I would die without these steroids, but I was slowly dying with them. I am so thankful that the solution was as simple as switching back to Cortef.

Do you have Adrenal Insufficiency and...

  • Are constantly nauseated?
  • Have a never ending headache?
  • Still feel beyond miserable despite your doctors telling you that your dosage is correct?
  • Are regularly blacking out not due to another medical diagnosis? 
  • Have an insurmountable amount of fatigue? (Side note, this could also be due to Gluten.)
  • Remain sick despite stress dosing?
Check the manufacturer of your HC. Is it the generic pill made by Qualitest? Call your pharmacy to see if you can get off of it. Fill this out. Do you have an opinion on the subject? Please share it below in the comments!

And note that I am NOT the only one who has struggled with this. Here is someone's experience from seven years ago.

12/23/2013 Update: I received a very pitiful letter from Qualitest apologizing for the "inconvenience" or "concern" that this issue may have caused and have heard of multiple others receiving the identical letter.

Keep filling out FDA reports. Also, if you have also been poisoned by Qualitest, please comment below and share your story.

05/16/2016 Update: It was brought to my attention that Qualitest was recently bought out by Endo Pharmaceutical Inc. This means that a new company can look into our complaints, and work to remove the harmful and completely unnecessary ingredient Sodium Lauryl Sulfate. 

BUT this requires action on your part.

Please call 800-504-0122 and pick Option 1. Please ask to add your story to Jo Edson's case number EMI16-008926. I was on hold for about 20 minutes and then spent the next 20 minutes sharing my story with a very kind nurse.

Endo Pharmaceuticals mentioned how they were unaware of any harm caused by Qualitest HC. We should make them aware.

01/01/2017 Update: It was brought to my attention that Qualitest pills are now being marketed as PAR Pharmaceuticals. That means that if you have it in your file, "No Qualitest" you might still end up with Qualitest labeled as PAR. The amount of smoke and mirrors in the Big Pharma is ridiculous. The pills still appeared to be marked with a "V." If your pill has a "V" on it, try to switch to something better.

125 comments:

  1. Thank you for this post, Amber! I took generic HC from Qualitest for over a year and had so many of these horrible symptoms, the headaches were the worst! I switched to Cortef a couple months ago and I feel so much better, and I take a lower dose of Cortef, and no headaches! A friend of mine who is a pharmacist told me that the generic manufacturers are actually allowed by the FDA to be up to 10% "off" on the level of active ingredients the brand uses. I never knew!

    I just recently read:
    "Most nations require generic drug manufacturers to prove their formulation exhibits bioequivalence to the innovator product. Bioequivalence, however, does not mean generic drugs must be exactly the same (“pharmaceutical equivalent”) as their innovator product counterparts, as chemical differences may exist."

    I guess for most who take steroids for non life threatening reasons that 10% probably isn't such a big deal, but for those of us with Adrenal Insufficiency who take it to literally stay alive that difference is huge! Thanks again for writing about this, I made the change to Cortef after reading your previous post and I'm so glad I did!

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    1. Oh I am SOOO thankful that your symptoms subsided by switching back to Cortef! Please make sure you fill out a complaint to the FDA (click the link "Fill this out"). I want all of us who suffered because of Qualitest to report it.

      And that is frightening about the bioequivalence and the 10% variance. I agree with you, for those on HC for anti-inflammatory reasons, it's probably not as big of a deal.

      For us, the difference is absolutely critical.

      YAY! We're both feeling better! :)

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    2. I am so glad that I found this info. I have probably been on the Qualitest brand for at least a year...I have had every one of the symptoms stated above. I just contacted my pharmacy and of course because Cortif is brand name it's not covered, so I immediately contacted my doctor to state that I can only have the name brand Cortif. I am so dedicated to my health, clean eating diet, exercise daily and set an alarm to take my meds on time etc....and to find out that this crap that I've been putting in my body is just making me worse. Many trips to the ER and the latest is blacking out while driving and causing an auto accident...now my car is totaled. The crazy thing is that I really have no idea what happened due to the black-out! That's not only scary, but pretty messed up!

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    3. Agreed Kris!!! It takes a while to flush the Qualitest out of your system, but once you do you feel SO much better! I'm glad this information was able to help you :)

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    4. My daughter who is 13 had all of those symptoms and thank God we were informed by your post about the Qualitest. I filled out a FDA form , informed her doctor, and emailed Qualitest. Endo medical called me with a claim number EMI16-008-784. My poor daughter had no idea why she was so completely withdrawn with such severe anxiety and completely shut down and had to drop out of the seventh grade!

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    5. Oh yeah! If you try to go to Qualitestrx.com it does not show up anymore!

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    6. Hi Lauren,

      I'm so sorry to hear how your daughter was affected. Hopefully, getting her off of Qualitest will help! Many thanks for filing the FDA report and generating an EMI number. The more people who report adverse reactions, the more likely we can get noticed. And that's fascinating about the Qualitest website being taken down. I hadn't noticed that before.

      ~ Amber

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    7. I have Lupus and several other autoimmune diseases that come with it. I am super sensitive to steroids. But, now I am expected to live on them for the rest of my life. I am desperate to find a doctor who has worked with the cortisol pump and adrenal insufficiency. in Oklahoma. Does anyone have any suggestions?

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    8. Are you still looking for help with cortisol pump?:)

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  2. This is exactly what happens to me when I try to use 20mg Hysone ( Australia) . It simply feels like it is not working. 4mg Hysone is fine. They are made by the same company but have different fillers. This is the only brand of hydrocortisone we have here in Australia.
    Each Hysone 4 mg tablet contains 4 mg of hydrocortisone. The tablets also contain the following inactive
    ingredients: lactose, maize starch, povidone and magnesium stearate.

    Each Hysone 20 mg tablet contains 20 mg of hydrocortisone. The tablets also contain the following inactive
    ingredients: lactose, maize starch, macrogol 8000, povidone and magnesium stearate.
    I am so glad you have blogged this.

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    1. That's crazy to think that even the same manufacturer can have different fillers! I'm glad to know that my experience has helped you :)

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  3. I've always complained to pharmacist abt switching generics all the time. Because if I do respond ok to a med n then they get another brand in, I'm all screwed up. My mom noticed this dif on herself years ago. She needed elavil which I also take for depression, also latter stages of sleep. But when they gave my mom a generic she abt had a breakdown. All these manufactures and pharmacist and insurance companies need to know, they r playing rush and rolet with our lives. HC, blood pressure med, anti seizure etc,... Can all have a deadly out come. I'm going to try to convince my insurance carrier I need the Cortef.:) thanks for the research:)

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    1. Happy to help others out with my experiences!

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  4. Amber, I jumped! But OMG!!!! it sounds like you have been incorrectly diagnosed initially and have continued to be incorrectly treated for your AD!!! Wow!! I started on Hydrocortisone oral 40mg per day back in Sept 2004. It's all a blur right now but along the way there was a time that the hydrocortisone just didn't work the same. I was changed to oral prednisone with yet another change sometime trying to attempt to go back to hydrocortisone as my doctors too say the old "well for someone on steroids you sure don't hold the weight" meaning I'm not over weight by ANY means. Anyways aside all the side effects that steroids cause even in a person with AD they hydrocortisone made me feel like I could just crawl out of my skin! It was horrible! So now I'm on 30mg oral prednisone. Gosh this is good to know! Thanks for posting even if I don't take theses specific ones its good to know. Also I have been explained that not all but most AD patients are on one or two steroids. One is the glucosteroid and the other mineral. The Cortef is the gluco and the flornief is the mineral. Flornief helps sustain our blood pressures. I was not started on the flornief right away that came about 6 months after I was diagnosed as my blood pressures were really low.

    There is also a difference is the IV steroids they give us in the ER or hospital if we are in a crisis or even pre surgery. Dexamethasone is one and Solucortef is the other. Main difference that was explained to me, Solucortef gives us blood pressure support and the dexamethasone does not.
    Questions for you
    Have you found good endo you can trust?

    Do you have an emergency dose of an injectable steroid at home? This would be for when you get sick and can not keep down oral medication and unable to get to ER right away. Kind of like a diabetic

    How has stress dosing been explained to you? And how do you tapper from stress doses?

    Thanks for everything your doing!!!

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    1. This brings a smile to my face :) You know the key questions to ask.

      To answer your questions first, I love my Endo #6 (took LONG enough to get in to see her, but the wait was totally worth it). And I do carry that emergency injection of Solu-Cortef with me at all times. I even have printed instructions on how to use it and my medical alert bracelet tells people to look for it if I go towards crisis. Also, over the years I have learned how to "stress dose" or even what are the signs and symptoms of low cortisol where I should take a little bit extra but not the true "Triple your dose, no questions asked!" stress dose.

      I even used to carry around Dexamethasone as my injectable, but one of my Endo's switched it to Solu-Cortef for the minerocorticoid properties (that's the blood pressure support you mentioned).

      How are you doing on your 30 mg of prednisone? That equals out to about 120 mg of HC, or triple your initial dose. And my failure to respond well to the generic HC in 2008 led my doctor and I to experiment with both dexamethasone and prednisone, very similar to how you were switched to prednisone.

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    2. The other issue with dex vs SC for the emergency injectable is that the SC will get in much faster. In SAI where the mineral steroid properties aren't as important, this is still very key. Dex is never a recommended IM injectable for AI, except by doctors who don't know better.

      It was Amber's initial experience with Qualitest while in our group that prompted me to also have a light bulb moment, where I realized I was regularly nearing actual adrenal crisis, getting worse when stress dosing vs better. I also found over time that ALL my meds that contain SLS make me extremely nauseated and at risk for vomiting.

      Amber-- you did an awesome job with this blog article and keeping it updated as things have changed in the industry. I'll share your blog link again today with something I'm posting.

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  5. Wow!!! I have been having trouble with my Addison's disease for several months now. I looked at my bottle the other day and it is Qualitest hydrocortisone. My labs had been a little off, my sodium and chloride were low, and the dr had me increase my dose to 25 mg daily from 20 mg. I have noticed for several months that after I do a bunch of housework, I am totally wiped out and in tears because I don't feel good. I end up taking more cortisone and feel a little better but not like I used to when I was on Cortef for 16 years. We moved almost three years ago to a different city, different dr and I have been on generic for the three years. I mentioned to my dr that I would like to switch back to Cortef because I had no problems whatsoever during the 16 years taking it, and she is switching me back to Cortef. Trying to get insurance co to cover it but they denied it. I can appeal it if I decide to. I just want to be back on the brand name because I did so much better. I am going to forward a link to your website so she can read this article. Thanks for writing the article to help Addison patients.

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    1. Betsy, make sure you file a report with the FDA. Your increased fatigue and general not feeling well are spot on side effects of that Qualitest. And yes please, share this! The more people that can be helped by my story, the better.

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  6. I will definitely fill out the form. I have noticed in the morning even after I take my morning dose of 20 mg, I am just worn out. It is like the feeling that I had before I was diagnosed, just like my heart is tired, my body is tired. I just feel like crumpling! I have already told other Addison patients on NADF.us about this article. Thanks for writing it!!!

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  7. Received my Cortef med finally. Am feeling a lot better. I don't know where to mention this to you, but there are a couple of petitions on Change.org for Addison disease awareness and EMS and physician protocols on treating Addison patients. I have signed and forwarded to friends and family. They still need a lot of signatures. Go to Change.org and "browse" petitions for Addison's disease!

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    1. Oh I have seen those! :) Yay for raising Awareness! And yay for feeling better on Cortef! :D

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  8. Amber, thanks for posting! My experience with Qualitest has been bad, too. Pharmacy refilled my regular CorePharma with it and from the first day on it I felt like I was getting the flu the whole time on it- stiff, aching muscles & joints, fatigue, racing heart, nausea. After 10 days I went to the pharmacy asking what they could do. They refilled my prescription early (I pay, not insurance, but a deep discount- worth EVERY penny!) and I'm back on the stuff that works. I'll now go in to request each refill..well worth the hassle to ensure I don't end up with this stuff. I hope everyone not feeling well with treatment, timing/dosage tweaks, etc who is taking Qualitest will request this easy switch from their pharmicist

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    1. Yup, my pharmacist helped me out also. PLEASE make sure you fill out that FDA report. And your description on Qualitest is a very concise and spot on way to put it.

      There are WAY too many people getting sick off of one manufacturer. But the only way we can get their attention is if everyone affected files a report with the FDA.

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  9. I nearly died from Qualitest! Took it almost all year for secondary adrenal insufficiency. I had one month of Cortef, at my request, from Doc, the office closed for 8 days,so not fax to the the pharmacy the refill, so I ended up out and had to take generic for four days…. I became suicidal, lost balance, could not stop crying, weak, diarrhea, rapid mood swings, frightened my daughter.

    I am strong, confident, active and never had memory problems before. My eyesight this week has dropped tremendously! This is proof to me that the generic is worthless and dangerous! I found your site here, and I had the same experience every time I took a pill… felt worse for hours..!

    Thank-you for suppling the site for the FDA, I filled it out just now. Three days back on Cortef and I am a different person. Wondering how much permanent damage this generic has caused me. Humana wanted me to take their brand. It was worse than the Qualitest! They will not cover one cent of the Cortef. Really bad part D company! Will notify Medicare, but doubt they will help me.

    Your site and telling us of your experience, was very important to me. I could find nothing else about the issue on the net, unless I missed something. Bless you for doing this.
    Doreen December 29, 2013… four days off Qualitest! 3:43 P.M.

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    1. I nearly died from Qualitest too! And then people thought my mom and I were crazy by stating that it was the generic that poisoned me. Once I realized how many people have been affected by this, I decided to become more vocal.

      Thank you for filling out the FDA report. That seems to be the official way to get their attention.

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  10. I've been takingrt brand name Cortef since a few months after dx in June of 2006. I ed off taking what ever my pharmacy gave me & I was VERY unstable my pharmacist said pick one & stay with it, it maybe because you are switching back & forth. So I picked the generic it was significantly cheaper. after a few months I was still steadily getting sicker my pharmacist suggested I go with brand name Cortef, I did & I started to steadily improve so from that day on I had my dr write brand name only. now almost 7 years later my insurance has decided to triple the price of my cortef so my 90 day supply that used to cost me @$36 now cost me over $100 as a punishment for not using a generic when there is one available. so far we have paid it. We are in the process of trying to "prove" that I NEED the brand name so they will stop punishing me for NEEDING my LIFE SUSTAINING MEDICINE in the form--BRAND NAME--that I need it in.
    Thanks for posting this I may need it to "prove" to my insurance that there IS A DIFFERENCE between Generic & Brand name
    Dannielle

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    1. Feel free to share my story with others. There IS a HUGE difference between the brand name and the generic for hydrocortisone. For those that use HC for the anti-inflammatory properties, the difference might not make as much of a difference.

      For us with Adrenal Insufficiency, the difference can literally be life and death.

      I too must pay more money to only take Cortef. I wish insurance would look at the bigger picture and realize that if I'm on Cortef, I'm in the ER less. Brand name Cortef is MUCH cheaper than Emergency Room visits and hospitalizations.

      Best of luck to you! And report your experiences to the FDA using the link posted above.

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    2. Do u know what pharmacies carry greenstone. I never put my symptoms with med cause. When I got sick I was on dexametasone in hosp which I thought was working and cortex also. When I got out I was put on hydrocortisone. I have had pain in all my joints and migraines, in and out of hosp constantly coded four times and now having seizures.. I wonder now if it is the med. I just got home from hospital with excruciating headache. I passed out and all Dr wanted to tell me is u don't have aeizures with Addison disease. I also have hypopituitarism and pernicious anemia. They found spot on lung and tumor in stomach they r watching. It never ends. I am constantly in bed with weak spells where I can barely walk. I have been taking 22 MG oh hc and only told to double dose when sic. I am constantly sick with flu like symptoms an bronchitis. I will talk to endo but he won't agree, I do not trust his judgement but he is only endo we have in small town. Lately I have been feeling like giving up. I am tired out. In hospital way too much since diagnosis in 2013. Maybe this will give me hope if it works

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    3. Hi Pana,

      Best thing to do is call and ask to see if your specific pharmacy can order Greenstone. All should be able to.

      Also, 22 mg a day seems rather low, especially if you are constantly dizzy and weak.

      ~ Amber

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    4. Do u know what pharmacies carry greenstone. I never put my symptoms with med cause. When I got sick I was on dexametasone in hosp which I thought was working and cortex also. When I got out I was put on hydrocortisone. I have had pain in all my joints and migraines, in and out of hosp constantly coded four times and now having seizures.. I wonder now if it is the med. I just got home from hospital with excruciating headache. I passed out and all Dr wanted to tell me is u don't have aeizures with Addison disease. I also have hypopituitarism and pernicious anemia. They found spot on lung and tumor in stomach they r watching. It never ends. I am constantly in bed with weak spells where I can barely walk. I have been taking 22 MG oh hc and only told to double dose when sic. I am constantly sick with flu like symptoms an bronchitis. I will talk to endo but he won't agree, I do not trust his judgement but he is only endo we have in small town. Lately I have been feeling like giving up. I am tired out. In hospital way too much since diagnosis in 2013. Maybe this will give me hope if it works

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    5. I get Greenstone through Walgreens.

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  11. Thank you for sharing your experiences, Amber. Each of us really do have different reactions to generic and branded medicine. And yet seeing your body’s reaction and as also some of your other readers’ comments in this post, it seems that this case of HC does need some looking into. Most of the time the generic medicine almost have the same effect as their branded counterparts so this case is deeply troubling.

    Jerald Griffith

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    1. I agree Jerald, which is why I encourage everyone who has experienced similar reactions to formally report this to the FDA. Qualitest and Endo Pharmaceuticals (Qualitest's parent company) have followed up with me and they are looking into this further.

      There were just too many of us that got sick. My hope is that by speaking openly and loudly about this issue, it can be resolved so that more people do not needlessly suffer.

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  12. This is really informative. When I was first put on HC I would feel sick to my stomach about a half hour after taking it. Nobody knew why, but it never seemed to make me feel any better. When my pharmacy switched to Greenstone (from Qualitest) as the manufacturer, those symptoms went away. I tried to find a list of the ingredients in Greenstone to compare to the ones you posted, but was not able to find them. If you can tell me where to look, I'd love to expand your chart to include Greenstone too. Thanks!

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    1. Cheryl, the ingredients of Greenstone seem to be identical to the ingredients of brand name Cortef, so much so that Greenstone is able to actually legal stamp their pill as "Cortef" but sell it at the generic price.

      Both Greenstone and Upjohn (the original maker of Cortef) are owned by Pfizer. I believe that's how Greenstone is able to sell the exact same drug as Upjohn, but it be labeled as a generic. There's so much smoke and mirrors within the pharmaceutical industry. It's a bit frightening.

      And I shall expand my chart now :)

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    2. Also, please make sure you report your experience to the FDA if you haven't already. I'm thankful you were able to be switched to Greenstone and noticed an improvement!

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  13. reported to FDA, couldn't figure out why I was getting headaches in the am and feeling freezing cold in the pm when I take 1 tab of generic hydrocortisone.

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    1. Thank you for reporting it to the FDA. Hopefully with a large enough group of us, they shall listen.

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  14. This is great reading. I take prednisone by Qualitest. Seems I started to feel bad on it 3 years ago. They blamed my mom passing a way etc but I wonder if there was a change in this at the pharmacy. I have searched for the ingredients for prednisone and they do not list but am going to try the name brand for 1 month if I can get a new script. Coiuld be my problem.

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    1. Worth a shot! Please update me if it does make a difference :)

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  15. I just wanted to tell you I actually talked to an Upjohn/Pfizer representative to ask about Greenstone. It is Cortef. They are just selling it as a generic, also. It IS Cortef.

    I actually got several phone calls from Pfizer folks making sure I and others were having no adverse effects from the Cortef/Greenstone. They wanted to know which brand caused adverse effects and I told them about Qualigarbage (as some of us call it). I have no adrenal glands as a treatment for Cushing's Disease. I know many others who do so much better on the Cortef/Greenstone.

    Thank you so much for this excellent information and I hope your life keeps improving tremendously.

    Robin

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    1. Thank you for that information! And I like your name for Qualigarbage. I might adopt that.

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  16. As promised Amber here is my story about my experience with Cortate ( cortisone acetate).I am an Australian so I hope any one else having problems after being on Cortate for so long may start to question why. I have been taking this med for seven years without much problem then around October last year I didn't seem to be coping like I should. I found it increasingly hard to function.
    I just went down hill after Christmas. I would stress dose and still almost slip into crisis. It was like they only worked some of the time as if some of the tablets had no active ingredient and some were okay. Hit and miss. Everyone kept asking me Have you taken your tablets and I was acting if I hadn't .
    I had constant brain fog, psychosis, depression, extreme fatigue , Shakes , dizziness, constant Diahhrea ,Irritable, no appetite, constant nausea. Constant pain , abdominal , lower back , legs . Shortness of breath. I couldn't recover from a chest infection despite adequate stress dosing. Three lots of antibiotics and my body still would not fight it. However I was still putting on weight for no reason. ( this however could be attributed to underactive thyroid).I had got to the stage that I could only manage to shower every couple of days for fear of passing out, and to shower meant the whole day in bed. I had to pay someone to wash my hair as I had not had the energy to wash it in a month. I was crying all the time and just a mess. One week ago I swapped from Cortate to Hysone ( Hydrocortisone) . I feel like ME for the first time in over six months. Pain has gone , brain fog has lifted. One day after starting the Hysone had a shower , washed my hair , went to the Doctor to get some scripts for my Mum , went to the chemist, got petrol . Came home and then did some cleaning. I did not crash , I did not have to updose as I was going into crisis.
    I am sure the Cortate was poisoning me , I talked to my pharmacist and she said that she had had many patients swap to Hysone recently. I also had another pharmacist ask me when I refilled my script ( I was trying to get another batch but couldn't ) if I was having any trouble with this medication. I thought that was odd as I have been refilling a script for seven years for cortate and that is the first time anyone has ever asked me that. My pharmacist said that she has had three complaints about medication from the company that makes the cortate this week.
    After one week , I have actually reduced my dosage by a third as I was way too Hyper , I have had none of the problems dropping down in dosage that I should have , which leads me to believe that something was blocking the absorption of the active ingredient in the Cortate or that it just wasn't there in all of the tablets. I have also dropped two dress sizes in the week . I feel like I have been in a coma for the last six months. One thing I have learnt about Addison's is question everything.
    Michelle.

    ReplyDelete
  17. UGH! I just switched today from Qualitest to Greenstone on my own assumption that it was causing me to have the most debilitating headaches of my life and the stuffiest nose EVER. Feeling great today on the Greenstone made me research the issue and it lead me here. Thank you for getting the message out about this.

    I actually requested Qualitest ONLY from my pharmacy a year ago when I found out there was mineral oil in Greenstone, so it's actually my fault that I've been taking this horrible brand for so long!

    Before the switch, I was starting to think I didn't have Addison's because HC was making me feel terrible, not better....I was starting to think I had a kidney disease because the FC was working, but not the HC!

    Do we know WHY the Qualitest brand causes all of these problems? Is it a specific inactive ingredient or is it the unregulated amount of active ingredient? Just curious.

    Going to fill out the FDA form now.

    Missy

    ReplyDelete
    Replies
    1. My gut is it's the Sodium Lauryl Sulfate. That seems to be the common ingredient between our Qualitest and the Australian Cortate.

      And thank you for filling out the FDA report! Perhaps if enough of us continue to speak up, the FDA will do something about it.

      Delete
  18. I have been on hydrocortisone for 11 years. I have had at least three 90 day supplies of Qualitest product which was adulterated / inactive. I now have my Endo write out my generic scrip for specific manufacturers. Unfortunately West Ward / Major have both dropped making generic cortef recently. Glad to see that others have had problems with Qualitest, (one of the biggest generic makers!!!

    ReplyDelete
    Replies
    1. Isn't it a little frightening? And West Ward was another favorite with many people sad they stopped making it.

      The safest bet for generic HC is now Greenstone. It's the brand name formula packaged and sold at the generic price.

      Delete
  19. I too am interested in avoiding sodium lauryl sulfate. However, I have a corn intolerance and the other products contain corn starch. Are there any hydrocortisone manufacturers other than those in the table above?

    ReplyDelete
  20. Here's another generic to add to your table:
    http://www.drugs.com/imprints/2807-glades-12434.html
    Here are the ingredients:
    http://en.diagnosispro.com/drug_information-for/hydrocortisone-tablets-usp-glades-pharmaceuticals-llc-description/3281-230719.html

    ReplyDelete
  21. Here's another generic to add to your table:
    http://www.drugs.com/imprints/cp-331-18673.html

    ReplyDelete
  22. Here's another generic hydrocortisone tablet by Lineage Therapeutics:
    http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=2dec7771-ddbf-11e2-a28f-0800200c9a66#nlm34089-3
    Under description, it lists the inactive ingredients as follows:
    lactose, pregelatinized corn starch, microcrystalline cellulose, croscarmellose sodium, sodium starch glycolate, and magnesium stearate

    ReplyDelete
    Replies
    1. Thanks Michael! Charts are now updated with the new information.

      ~ amber

      Delete
  23. Thanks for this. I picked up a prescription for HC last night, I noticed when I took one this morning they were larger and very chalky. 5 mins after taking it I was nauseous, lasted about 2 hours ! I went home early as I had things to do, had a headache from he$$ felt as if I hadnt had any meds at all ! . When i got home i checked the bottle and called the pharmacy, it was made by Lineage pharm. I asked if she had an alternate, she said no but if I can find one she will redo it . I've never had this one before and unfortunately I dont want to take anymore...

    ReplyDelete
    Replies
    1. I have just had the exact opposite experience. I was diagnose with addisons after many years of illness. I have been taking Qualitest
      For 2 years and was doing fine. The past few weeks have been hellish. Jus found out I had been switched to Cortef without my knowledge. I wonder if it is just what your body accepts? Strange

      Delete
    2. Hey CK,

      When I was first switched back to Cortef, I went through what was almost like a "detox" stage. My mom witnessed then entire thing and at some point, she will share her side of the story. The first 24 hours were pretty rough. But all symptoms subsided after about two weeks.

      I will admit that not everyone has as violent of a reaction to Qualitest as I did. But still, I am a bit nervous at the sheer number of people who have reacted adversely to this one manufacturer. I still strongly caution people to avoid it.

      HOWEVER, each one of us is different. The trick is to advocate for your own health and keep trying to figure out what works best for you as an individual. Best of luck with your journey!

      ~ amber

      Delete
  24. Thank you so much for sharing your story! I believe it may have saved my life! Last month, I was diagnosed with panhypopituitarism. I was overwhelmed with all of these new medications that I had to start taking. Several days after beginning my new regimen, I began having horrible stomach pains, nausea and horrendous headaches. I was taking Zofran and Phenergan to keep from throwing up. I couldn't understand why I was getting sicker. Thankfully, I asked the right questions, in a facebook forum and someone attached the link to your blog and told me to read this. Sure enough, I checked my bottle and the name, "Qualitest" was there. I was shocked that any pharmacy would still be selling this stuff. I called my doctor immediately and he agreed to write me another prescription. I was able to find a pharmacy in town, that carried the Greenstone brand. I couldn't believe the remarkable difference. When I began taking the Greenstone brand, I felt great! I was amazed at how different the two drugs were that were supposed to be similar. I've been on the Greenstone brand for a week now and am continuing to feel good. I believe I might have acquired a stomach ulcer or irritation as a result of taking the Qualitest brand for 2 weeks. I am hoping this eventually clears up. Thanks again for sharing your story! Being a beginner with all of this, I do not believe I would have ever figured out what was killing me.

    ReplyDelete
    Replies
    1. Oh I am SOOOO thankful you found this info and were able to switch off of Qualitest!

      Make sure you fill out an official report to the FDA. I have the link posted above. The only possible way we could potentially get this pulled of the market is if a large enough group of us file official reports.

      Delete
    2. I will!! And, I wrote a letter to the Qualitest company asking them to switch their ingredients. Thanks again for all of your help! :>)

      Delete
  25. Amber, I cannot tell you how grateful I am for your post. Someone posted the link in an adrenal support group. I started Cortef almost a year ago and was doing well. Even after the pharmacy switched to the generic, I was doing fine because it was (I know now) the Greenstone. About late summer, I started having trouble. My startle response was through the roof, and then in October, we went to Hawaii. The heat and the humidity was terrible. I couldn't leave the condo because I had to be in front of the AC. Or if I did try to go to the beach, I had to go straight into the water, but even there I was hot and nauseous. Our last night, my husband wanted to take me to a beautiful, romantic dinner but even with a stress dose of HC cream, I was so sick at the restaurant, we had to get our food boxed as soon as it came.

    It only got worse after I got home. I was back to being unable to do even a little housework or even take a shower daily. I couldn't figure out why I always had a headache no matter how much ibuprofen I took. And part of my AF is severe pain. It's only gotten worse since Hawaii.

    After reading your post, I had my doctor call in a prescription for Greenstone. The pharmacy tech I talked to at Costco seemed a little put out but it's only been 5 days and the headache is gone and my pain levels are coming down.

    Bless you for making the connections and doing the research. I will be filling out the FDA form next! And I have shared this info in the support group several times. Many people have said your story needs to be in the permanent notes where we keep all the information that is so important for those dealing with this issue. So again, thank you!

    Sincerely,

    Tami

    P.S. I'm only anonymous because I don't have any of the accounts that are options.

    ReplyDelete
    Replies
    1. Tami, thank you for sharing your story! I hate how Qualitest stole some of the joy of visiting Hawaii from you. I know those poisonous pills definitely ruined several events in my life.

      Feel free to continue to share this, and encourage anyone who has been affected to fill out that official FDA report as well. I hope that eventually there will be enough reports so that the FDA takes action!

      Delete
  26. I've been taking Qualitest HC since October and have been so sick with horrible jitters and shaking even after taking my doses. I never had all the lows of cortisol to warrant HC but my doctor convinced me it was my problem.
    everytime I took the HC I got sicker and sicker. I found this article and read all the posts. there is something in it that is making people sick and not getting the right amount of HC that is in Cortef or Greenstone.
    I am in the process of weaning off because no amount of HC ever helped me but made me sicker. I wake up everyday with the shakes, jitters and that coming out of your skin feeling. I just can't take this much longer. I know how dangerous it is to stop HC too quickly but If I feel like this on it, I just have to jump off.
    I asked my doctor to Rx me Cortef but my insurance won't cover it and I can't afford the 214.00 out of pocket expense. I found a CVS that carries Greenstone but ,my doctor is not around until Friday and then I would have to travel over an hour away to get it.
    At this point I don't know what to do. I hate ingesting this toxin and I feel manic and so anxious on it. I should never have taken HC to begin with and only should have stuck to the adaptogens. Now I have to get off if that's even possible and get retested for cortisol again to see if I need to be on it. I can tell you this, the stress and anxiety (if this qualitest is doing it to me or weaning off) is surely making my adrenals take a huge hit and will never get better. It's all a real pain in the ass!!!
    where do I fill out a complaint. is there a website I can contact the FDA and alert them of the dangerous of this generic drug of hell!!!

    ReplyDelete
    Replies
    1. Link here: https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=consumer.reporting1

      As for the ingredient, we think it's the Sodium Lauryl Sulfate. That's supposed to be for soaps and shampoos NOT life-sustaining medicine.

      Please DO NOT stop taking HC abruptly though. If the diagnosis comes back as Primary Adrenal Insufficiency, no amount of adaptogens will replace the cortisol your body needs.

      However, if you are on HC and your body doesn't need it, you will feel miserable. But it's a different type of miserable.

      Are you angry and starving or emotional, weepy, and incredibly overwhelmed? The answer to that question can help determine too much or too little HC.

      Delete
    2. I have been diagnosed via testing with adrenal fatigue. My doctor is trying hydrocortisone with small 2.5 mg increases. I have the Greenstone brand. I increased today to 5 mg in the morning and feel emotional, weepy, and incredibly overwhelmed. Can that be a sign of too much?

      Delete
  27. Yes. I was double poisoned for about four years. I have Secondary Adrenal Insufficiency. I took Qualitest Hydrocortisone for the SAI. During those four years of taking the Qualitest Hydro, I was also taking Qualitest Hydrocodone. The qualitest Hydrocodone also contained the poison Sodium Laryl Sulfate in them.
    So, I was poisoned double time for four years.
    I have reported, bitched and moaned.
    Qualitest has NEVER bothered or cared to contact me at all. Same with the FDA.
    They do not care! They simply do not. You know why? They do not care because they are making money.
    Wait until it is their mother, sister or daughter, then they might start caring.
    Thanks for sharing this. I got told in one forum to not be an "alarmist", and to quit scaring people about QUALITEST brand hydrocortisone. I, of course, did not listen to them and got kicked out of the forum. So be it. Peoples lives are at stake here, and also their QUALITY of life in which the manufactuerer seems to not care about even though part of the word QUALTIY is in part of their name.

    ReplyDelete
    Replies
    1. I think the large number of comments on this single blog post alone show that we are not being an "alarmist." WAY too many people have been affected. And the number of people saying "me too" continues to grow.

      Continue to share this post and encourage people to file official reports with the FDA. Perhaps eventually, we can get it so that Qualitest will stop poisoning others.

      Delete
  28. I switched to Qualitest and was only on it for a few days, for all of the reasons you cited.
    However, also tried Greenstone brand--with same problems.
    I had to supplement the generic hydrocortisone with 5 mg of prednisone to be able to function...So in other words, the generic was useless in both cases. Here is my Question: Why does the FDA allow Greenstone to make a generic that is identical to the brand name cortef? Anyone in the supply chain could replace the brand name cortef with greenstone generic and no one could tell the difference.
    After going back on brand name, I seemed to have some of the same problems as with the greenstone. So am wondering if I am paying for the brand and getting generic. No way to tell.
    The FDA needs to ban these identical generic look alikes.
    Qualitest was the absolute worst but at least it was identifiable.

    ReplyDelete
    Replies
    1. Here's the answer to your Greenstone being identical to Cortef: The same parent pharmaceutical owns both Greenstone and Cortef.

      Cortef (the brand-name) was created by UpJohn around 1952. Pfizer aquired UpJohn in 2002. Now Pfizer owns the brand name.

      Greenstone is also owned by Pfizer as a generic. Because Pfizer owns both UpJohn and Greenstone, Pfizer can create Cortef and sell it under the generic Greenstone.

      Pfizer does this to allow patients to purchase the brand name drug at the generic price. If it's stamped as Cortef, you can trust it as Cortef.

      I hope that makes sense :)

      Delete
  29. I have adrenal insufficiency and I cannot take Cortef. It causes such abdominal discomfort and fatigue until it is out of my system (8 hours or so). Does anyone else have this problem? I am on a sustained release hydrocortisone right now.

    Thanking you in advance for your input!

    ReplyDelete
    Replies
    1. Are you sensitive to corn? Brand name Cortef DOES contain corn starch, so if you have a corn sensitivity that could cause your abdominal discomfort and fatigue.

      Delete
  30. Hi Amber,

    Thank you so much for responding.

    My recent food ALCAT test shows no sensitivity to corn or any other gluten free grain, but shows a sensitivity to gluten and all grains with gluten. I will say my digestive system is somewhat sensitive.

    My doctor recently had hydrocortisone (not Cortef) compounded and put into an enteric coated capsule to see if that made any difference with the gut spasms and fatigue and it didn't.

    Somehow or other sustained release works, but my physician does not think sustained release is the optimum treatment when trying to mimic the body's way of using cortisol. I can't find anyone else blogging about having a problem with Cortef and/or hydrocortisone taken orally.

    The compounding pharmacy has indicated hydrocortisone and Cortef are very hard on the digestive system. I just can't seem to find anyone else in the same boat as I am in.

    I would love to hear your thoughts on this subject.

    Thank you again.

    ReplyDelete
    Replies
    1. There seem to be more and more people that struggle with taking pills orally, EVEN with the brand name. I'm not quite sure what has changed in the past few years, but I do know that something has changed.

      If your physician is already familiar with trying to mimic the body's way of using cortisol, would he be open to trying a completely new method of delivery for the medicine?

      You take a pump and instead of filling it with insulin, you fill it with solu-cortef in a ratio of 100 mg/mL. Cortisol is then delivered 24/7 in a custom fit pattern that tries to mimic as closely as possible the circadian rhythm.

      Gut spasms are eliminated. Fatigue is reduced. The stomach is bypassed as the medicine is delivered directly into the sub-q fatty tissue in the skin.

      In the future, I will definitely blog more about this treatment option. However, here is one of the best articles describing the treatment, written by the man who pioneered it: http://www.cahisus.co.uk/pdf/USING%20THE%20PUMP%20METHOD%20IN%20ADDISON%27S.pdf

      For those who fail to respond well to oral replacement therapy, this is an incredibly viable option for them. It takes a significant amount of work to get started, but most find it worth it.

      Delete
  31. I totally agree with you. I had a "mommy instinct" that my daughter developed Pseudotumor Cerebri (Intracranial Hypertension) back in October 2009 due to the generic pharmaceudical company Glade.
    In 2011 we were still getting pills made from 2009. I kept the pills, the NDC #, filed a report and nothing. I'm not one to go around suing people. Its not my thing but if I would've known then i would have made sure Gabbi always got the Cortef name brand!!
    For a month straight my daughter’s eyes were rolling around like marbles, her head felt like it was about to explode, and she asked me if she was dying. After a full month of non stop pain and two hospitals sending us home ---- finally one realized what was going on and we were able to finally release the CSF pressure building up and pushing against her skull and eyes. We returned over the next two years for spinal taps when the pain was too much to bear. So from 2009 to 2011 I was so heart wrenched seeing my baby go through this.
    I looked into everything to try and find the cause of all this trauma! We had 10mg Glade Hydrocortisone tablets and the 5mg tablets due to how small they had become so we could dose Gabbi more precisely (or so we thought at the time.). The doctors thought the dosage or the generic itself could be causing it. We switched her to a compound hydrocortisone and she got better!!!
    It was then I started looking into the company and found out the pills were discontinued in 2009. I called their company which had changed to Stiefel Lab. The man on the phone didn't know what to say to me and probably didn't care either. I actually still have the Glades generic Hydrocortisone pills. I just wanted to keep them in case they were needed for evidence one day.
    Hydrocrtisone Acetate is the formulation needed to take by mouth to maintain the 4 to 6 hour half life in your body. Adrenal Insufficient people need to have this to live and my baby just kept on taking their pills for two years making her more and more sick.

    ReplyDelete
    Replies
    1. Yay for trusting your "mommy instinct!" My mom was also the one that discovered Qualitest poisoning. She just had this nagging feeling that something was not right. I'm so glad neither of y'all gave up and trusted your gut!

      I had forgotten about the horrible pressure in my head, the pounding headaches. It felt like my eyeballs were going to pop out of my head.

      I wish people would realize that these seemingly harmless changes are playing with people's lives. No, all drugs are NOT equal and yes, there is a difference between different manufactures.

      I hope your daughter is doing better now! Perhaps as we raise more awareness on this issue, we can reduce the suffering of others.

      Thank you for your comment, and I apologize in my delayed response.

      ~ amber

      Delete
  32. Hey Amber we talked quite a while ago i have been on Qualitcrap for 5 months and felt fine but now im getting major headaches and nausea like you wouldnt believe requesting greenstone tomorrow from pharmacy so this should stop do you have a link to that FDA report thing. Thanks for the information this needs to change

    ReplyDelete
    Replies
    1. Hi Ryan,

      Here's the link: https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home

      And remember, it might take a while for you to feel better once you get off of Qualitest. I went through almost a two week detox as the garbage was flushed out of my system.

      Best of luck!

      ~ Amber

      Delete
  33. I refilled my 5 year old sons 5 mg tablet Hydrocortisone at the pharmacy for his CAH, and the 1st pill that I gave him (he chews his) he took 1 bite, and spit it out, and said it was gross! When I compared bottles, I noticed the new one is a different manufacturer, Qualitest, and he refuses to take them, so I wasted my money filling a 180 count bottle, and now I have to search for greenstone to make sure that I'm getting a good product. I'm glad I have found this out early, and that he has listened to his body!

    ReplyDelete
    Replies
    1. I'm glad too! And better wasted money on Qualitest than money invested in hospital trips and countless doctor's appointments to try to figure out why his CAH is suddenly unstable.

      Best of luck with your hunt for Greenstone! :)

      PS- That Qualitest pill does taste beyond nasty!!!

      Delete
  34. I just came across this website because I have been feeling like crap for a long time. Was diagnosed with AD almost 8 years ago. I did great for awhile and then something changed. I also have hypothyroidism and premature ovarian failure. I was taken female hormone replacement and synthroid. I just figured my severe anxiety, nausea, daily headaches and general crappy feeling was from my other hormones being off. I tried a zillion different things trying to balance it out. Nothing has worked. I even stopped the hormones and nothing has changed. No one can seem to help me, so I decided to dig on the internet (which for me is usually an awful thing to do because of my severe anxiety). I came across this blog. I immediately went to my hydrocordisone and found it is mfg by Qualitest. So I called the pharmacy. I know I have taken a different HC in the past because the pills looked different. I asked and sure enough, they switched mfg from Greenstone to Qualitest in May 2014. I have been going downhill ever since. I go to pick up my new HC - mfg by Greenstone this afternoon. I am praying this is the answer to everything. I have a strong feeling it is and that God placed this in front of me for a reason. I will post in a few weeks as to how I am feeling! Wish me luck!

    ReplyDelete
    Replies
    1. Hi Lisa,

      I'm so thankful you stumbled upon my blog! And yes, please DO update me on your progress.

      I do want to caution you about a "detox phase." It took about two weeks for the Qualitest to flush out of my system, and those first 24 hours were especially rough. But worth it.

      Best of luck! I can't wait to hear an update from you about how you are Clearly Alive :)

      ~ Amber

      Delete
  35. What made the first 24 hours so bad? I went to pick it up and they were sent more Qualitest! Ugh. So have to wait a bit longer.

    ReplyDelete
    Replies
    1. It almost felt like I was slipping towards a crisis as my body was detoxing from poison.

      All I did was basically sleep that day. The next day, I woke refreshed and like a huge burden had lifted. Within two weeks, I was feeling like the healthy Amber!

      Note that each person's detox phase will be slightly different, so give yourself at least a month back on Cortef or Greenstone before you make a final call.

      Delete
  36. Wow. This is all so unbelievable to me. I just don't understand how doctors don't know to warn people against this.

    I started getting really sick about 9 years ago. I threw up all the time, slept alot and couldn't stand for long periods of time. This is very unlike me. I am a very active person and I have 4 daughters who are my world, but I could barely take care of them. I went to doctor after doctor. I was told I had chronic nausea and that it was just my anxiety and it was all in my head. I kept going downhill. Finally, my neighbor (who coincidentally works for Pfizer) told me about a doc who looked at me and noticed my color. He saved my life. The day he saw me my blood pressure was 60/40 and I could barely stand. He told me that I was 2 weeks away from organ failure. Unfortunately he retired early and have seen several endocrinologist's but no one seems to really know whats going on.

    I feel like we have to doctor our self. And for me, on top of AD, the other hormone issues make it even harder to regulate it all. I'm just so sick and tired of being sick and tired! I am sooo hopeful that after a year and a half of going down hill again, things will stabilize and I will feel like ME again!

    ReplyDelete
  37. That last post from unknown was actually from me! -Lisa

    ReplyDelete
    Replies
    1. Doctors don't know the dangers themselves. They were taught in medical school that generics are perfectly safe equivalents to the brand names, just cheaper.

      However, that's not always true. And because the government states that the brand name and the generic are equivalent, the generic is required by law to carry the EXACT same warnings even if it causes different side effects.

      So for example, Qualitest HC caused nausea, headaches, dizziness and malaise. However Qualitest is forbidden from warning users of these potential side effects.

      "Currently, FDA rules prohibit generic manufacturers from updating product labeling even if they become aware of a potential risk not stated in the labeling. In contrast, the FDA allows brand-name drug manufacturers to update warnings and precautions on product labeling before getting FDA approval. The generic drugmaker is required to match its labeling to brand-name labeling." (Source: http://www.citizen.org/pressroom/pressroomredirect.cfm?ID=3922 )

      I agree with the feeling that we have to doctor our self. HOWEVER, through the years I have discovered that being extremely pro-active with the management of this disease has lead to a much higher quality of life.

      I look forward to hearing about when you stabilize again :)
      Don't give up!

      Delete
  38. I was switched to Greenstone by either my endo or insurance company, not sure which, and was floored, because generic HC had not worked for me in the past. I never thought to look at the manufacturer. Anyway, after I researched the manufacturer, because of this blog (thank you!), I thought I'd just give this a try and it's worked out beautifully (adrenals removed 2003). Plus it's less expensive. I'm very surprised! Good health to you all.

    ReplyDelete
    Replies
    1. Thanks for stopping by Suzanne!

      Greenstone is actually identical to Cortef. Pfizer owns both the brand name and that particular generic, so it is able to sell a brand name drug at a generic price. It's very kind of them :)

      Delete
  39. Thanks so much!!!! I just paid a fortune for cortef. I did not feel good on generic qualitest either. My insurance would not pay for cortef.....thanks for your article!!!! They can get me Greenstone. I appreciate your wisdom.

    ReplyDelete
  40. I felt I was dying and would not last another month. I had to quit working and stayed in bed all day/night. Getting up to go to the bathroom was a huge effort. A friend who is an ER doctor suggested I change from my generic to the actual Cortef. Although it took me a while to feel "OK", immediately I could tell that I would live. I was amazed at the difference. Reading your blog today for the first time, I am surprised to hear that others have the same problem. (Well, I guess I shouldn't be surprised.) I've wondered if the improvement was all in my head. Now I feel confirmation that it was not in my head. Thank you.

    ReplyDelete
    Replies
    1. Hi Debbie,

      Glad you found this :) And nope, it was definitely not in your head! I'm glad you're doing better.

      ~ Amber

      Delete
  41. Thanks for this post, Amber! I was diagnosed about 3 years ago with AI, and was put on HC. I don't remember the generic brand I was on anymore, but I didn't have any issues with side effects. At some point, I was switched over to Qualitest, and although I didn't have the life-and-death problems that some posters here have mentioned, I started getting headaches for no apparent reason, and had terrible stomach aches, especially after a BM. (I should mention that I don't eat gluten, and have a very healthy organic diet.) After reading your post a few weeks ago, I had my pharmacy order Greenstone for my refill, and had far fewer headaches, and no more stomach aches! Unfortunately, Rite Aid just notified me that they can no longer order the Greenstone, so it's goodbye to them! I'm off to try CVS and Walgreens, and if that doesn't work, I'll try others!

    Again, many thanks for your very enlightening post!!

    BB

    ReplyDelete
  42. Walgreens had Greenstone HC in stock, and also can special-order it, so I moved all my prescriptions over to them! :-)

    BB

    ReplyDelete
    Replies
    1. I LOVE Walgreens!

      I gave them a shout out here: http://clearlyalive.blogspot.com/2016/01/on-insurance-computer-systems-and.html

      Delete
  43. I had one of my adrenal glands removed in 2014 and had horrible psychosis afterwards. My endocrinologist tested me several times and said my levels were normal. Boy, did I think I was going crazy.
    She gave me a prescription for a single dexamethazone tablet to do the suppression test, but I ended up with a whole bottle. That was a godsend! I started taking that every day and the crazy time went bye bye.
    To the point though, Walgreens switched to Qualitest from Greenstone last month (I just learned about the brands from this page) and didn't think much about it. I was getting intense chest pain and headaches, doubling my dose of Qualitest made me feel really jacked up for some reason. I have been in hell all day, afraid to take more.
    Well, I had some of the old stuff in my keychain and took that, amazing how much better I feel. Walgreens was called, and they are happy to order the Greenstone for me again. Who knows why they changed it, but I am glad they are so easy going to change it back.

    Thank you for this page, Amber, it cleared things up for me. I don't have to go through such a tough, long time figuring it out as you did.

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    1. Hi Allan,

      While I'm sorry you went through that, I'm happy you discovered it rather quickly!

      Please make sure you fill this out: https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home

      Also, if you have time during the week please call 800-504-0122 and pick Option 1. Ask to add your story to Jo Edson's case number EMI16-008926. This will open up an official investigation with Endo Pharmaceuticals, causing them to look into why Qualitest HC seems to poison so many people.

      Thanks!
      Amber Nicole

      PS - I love Walgreens. They have always been so incredibly helpful with working with me.

      Delete
  44. I've been getting Qualitest for MONTHS now. Ever since my pharmacy changed to it from Greenstone, I have not felt well. My sodium has fallen and my potassium has risen. My BP is often low. My doctor temporarily increased my dose, but I'm supposed to go back to my lower dose soon, which terrifies me. I am also supposed to pick up a 3 month supply of hydrocortisone later today, and I can only assume it will still be Qualitest. How do you get them to change what brand they give you? Is it too late now that my prescription has already been filled?

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    1. Hi Emma,

      The best thing for you to do is talk to your pharmacist and explain the importance of the manufacturer. See if they can swap you back to Greenstone and Greenstone only. All pharmacies should have the ability to order any manufacturer. If they tell you that they cannot, you might need to take your business elsewhere to a different pharmacy.

      As long as you don't walk away from the counter with the meds in your hand, you should be able to swap out manufacturer. However, the second you leave that counter, the meds become yours and are unable to be exchanged.

      Also, please make sure you fill this out: https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home

      Additionally, if you have time during the week please call 800-504-0122 and pick Option 1. Ask to add your story to Jo Edson's case number EMI16-008926. This will open up an official investigation with Endo Pharmaceuticals, causing them to look into why Qualitest HC seems to cause adverse reactions to so many. The more official reports that are generated, the better.

      Best of luck!Amber Nicole

      Delete
    2. Thank you so much! It's started storming, so I've had to put off picking it up until tomorrow, but I will definitely speak to them then. I have a hard time being bold, and the people at my pharmacy can be rude at times, but I will try to be brave! I'm glad to know that it isn't too late.

      Thank you for the information on reporting it as well.

      Delete
    3. I just thought I would update you on what happened when I went to the pharmacy. The pharmacist didn't seem so happy with my request, but he did offer to see if they can get Greenstone instead. He said they normally get whatever "they" send them. I'm supposed to call to find out if they can get it or not tomorrow.

      On the other hand, it turns out that for whatever reason my prescription is actually only 120 tablets, which leaves me one day short of a 31 day month, and with none for stress dosing. I don't know what happened as the doctor's office told me it was a 3 month prescription with my usual 180 tablets per month. So now I have to call the doctor's office again and see if I can get the right amount. I'm getting ready to pull my hair out over this!

      Delete
    4. Hi Emma,

      Yes, the pharmacy normally gets whatever "they" send them, HOWEVER all pharmacies can request specific manufacturers. He probably wants his job to be simpler, but you'd probably like your quality of life to be higher ;) If he keeps giving you a bad attitude, report him to his managers and take your business elsewhere.

      I hate how many hoops we have to jump through in order to just live, it's definitely unnecessary stress. I'd love to see "healthy" people have to go throw a ridiculous amount of hoops in order to gain access to oxygen or water or something else critical to life.

      PS- Feel free to print of this blog post and give it to the pharmacy to help educate them on the importance of certain manufacturers. I did that with a few pharmacies in the past, and they seem to be more receptive after they realize that for certain medicines it makes a BIG different.

      Best of luck!
      Amber Nicole

      Delete
  45. Just went through this myself. I'm PAI (bilateral adrenalectomy in 2015) and was on Qualitest for a month or two, then switched to another generic for many months until this past month when the pharmacy ordered Qualitest again. The first time, I hated it but chalked it up to recovering from my thyroidectomy, which coincided with my issues. This time around, I had no other changes or things going on medically in my life and I started getting daily headaches, and my moods have been incoherent (which for me tends to be a tell-tale sign of low cortisol). I posted about it to my Facebook Adrenal Insufficiency friends and they all recommended switching to another generic or brand name Cortef. My endo refuses to believe that my generic drug could be causing the problems, but my sweet pharmacy technician offered to order Greenstone next round for me to see if it helps. I filled out the FDA form per your blog post just today. It makes me physically ill to think that they haven't done anything about it when this is a life-sustaining medication and when it doesn't work properly people's lives are at risk!!!! It's already frustrating enough to live with a rare disease and the daily worry that something may happen and no doctor in the ER will know what to do to save your life, and this on top of it is ridiculous. PS We need to find a lobbyist who will fight for AI emergency services protocols as well as drug companies to invest in research to create self-testing for cortisol similar to diabetic blood sugar tests. It's ridiculous.

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    1. Hi Kari,

      I'm SO thankful your FB AI friends were able to recommend getting off of Qualitest. When generics first appeared, they were required to be more similar to the brand name. Some doctors still believe that generics today are the same as generics of the past.

      They aren't.

      Just reading through the comments on this blog and you can see how many people said "Me too." It's very frightening. Sodium lauryl sulfate should NOT be used as a filler in generic meds.

      My pharmacist was also the one able to order Greenstone / Cortef for me :)

      PS: I agree! Adrenal Insufficiency United makes it their mission to get protocols in place, and that type of self-testing for cortisol is definitely in the works. I bet in another 5 years we'll have access to it. And that excites me :D

      ~ Amber

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  46. Thank you for the reply! I am curious as to where you heard about the testing being in the works. Could I contact you directly at any point (Facebook messenger or email)? I'd love to learn more as I still consider myself a newbie. My three year old son will probably eventually be PAI as well so I'm anxious to hear about medical advances when possible. Feel free to read my story: https://karimdahl.com/

    ReplyDelete
    Replies
    1. Hi Kari,

      Feel free to send me a message on my FB page: https://www.facebook.com/clearlyaliveart/

      ~ Amber

      Delete
  47. Hi Amber Nicole,

    I'd like to thank you for your blog.
    I have a pituitary adenoma and it caused many of my hormones to be low.
    My main symptom is the crippling fatigue. It's so hard to get ANYTHING done. My life has been on hold.
    After testosterone and thyroid medication, my fatigue is still through the roof.
    So I did the saliva test for cortisol and I was low for that too.
    I started HC on last week, and for 2-3 days I felt some (but not enough) improvement.
    So my doctor and I increased the dose and things have just been getting worse.
    Additionally, my eyes has been watering ever since I've been taking it.
    And I feel this weird heat coming from inside my body.
    Which is weird because I was hoping taking the cortisol would make the hot flashes stop.
    I have Qualitest HC, so I really hope that's the problem, so I can finally move on with my life.
    I've ordered Cortef and I should get it on Monday.
    I read on your blog that you also have a problem with Gluten just like me.
    Gluten always caused my back to ache, that has come back a bit too with the Qualitest HC.
    I don't have sickness or anything like that.
    But symptoms staying the same or possibly even worse, sounds like what you describe here on your blog about generic HC.
    Thank you again so much for your blog.

    ReplyDelete
    Replies
    1. Hi Tim,

      I'm so glad you found my blog! I found the symptoms for Gluten Intolerance and Qualitest were very similar. We discovered Qualitest first with me, and then I was still reacting to something.

      Through more trial and error, we traced it back to Gluten.

      I'm now off of both and doing much better. And I wish the same for you!

      ~ Amber

      Delete
  48. Very interesting! Turns out, a couple of weeks ago I learned my pharmacy switched from Greenstone to Qualitest last August. So far I have not noticed any difference.

    ReplyDelete
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    1. Be careful. It took five years of Qualitest before it built up enough in my system to reach that toxic level that it almost cost me my life. So symptoms might start out small and unnoticeable (more headaches, general feeling of not well...), but they might continue to build.

      ~ Amber

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    2. Amber can u 3xplain more . I have been on it for4 years. R u saying build up can cause symptoms that r bad. Did u say had allergic reaction. What was it

      Delete
  49. I have been having severe headaches, passing out, seizures, does that mean toxic, also high bp and my fave is swollen with red marksm7nder my eyes. I have abd pain and numbness and tingling

    ReplyDelete
    Replies
    1. Hi Pana,

      I'm so sorry to hear about your symptoms :( For me, at first the symptoms were not that noticeable. I just wrote them off as headaches and general not feeling well. And then I had my "Nightmare" Crisis.

      Talk to your pharmacist and see if you can switch to Greenstone. See if any of your symptoms go away. Though please give Greenstone at least 2-4 weeks before you judge if it's good or bad.

      ~ Amber

      Delete
  50. thank you for this. My head been killing me at the time where my hydrocortisone medicine is peaking and it is just getting worse.

    ReplyDelete
    Replies
    1. Some how I missed seeing this comment. I hope you were able to switch to a different brand and notice an improvement!

      ~ Amber

      Delete
  51. Qualitest is now a part of Endo... I was taking another brand of prednisone and was changed to one from Cadista... I told pharmacist it made me feel off, headache, nausea etc.. just looked it up and has ingredients similar to Qualitest...ugh need to go back to my original

    ReplyDelete
    Replies
    1. I'm so glad you discovered it! Make sure you report your reaction to the FDA.

      ~ Amber

      Delete
  52. I've been taking Qualitest and having awful headaches; I'd like to try a different formula to see if I feel better. Costco suggested Vensun, so I looked it up and these are the inactive ingredients: Lactose Monohydrate, Cellulose, Microcrystalline, Silicon Dioxide, and Magnesium Stearate. Any thoughts? Thanks in advance!

    ReplyDelete
    Replies
    1. I haven't heard of Vensun, but I'll definitely add it to my overall chart. Can you send me the link to where you found the ingredients?

      Also, that brand does not contain SLS, which we think is the main ingredient that causes so many of us to become ill.

      ~ Amber

      Delete
    2. Oh wait. I found it. I'll update my chart to include it!

      Delete
    3. Great, thanks for your help!

      Delete

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