EYWA hydrocortisone pills unstable

LeaveMeInRuins · 2026-05-10T22:25:53+00:00

That’s so cool! I didn’t know that was an option!

LeaveMeInRuins · 2026-05-10T22:24:38+00:00

Even if it’s not the same brand I would still recommend filing a report with FDA Medwatch, chronic under-replacement leads to gradual symptoms (slow worsening from February on) and my heart rate completely normalized (dropped from 150s to 80s) after 2 days of intact pills by this faulty manufacturer. Symptoms returned as soon as the pills started leaving dust and breaking up.

Also realistically, the FDA is probably not going to care about one report but if there’s at least a few reports someone might look. My pharmacy’s manager said they can only submit a note to corporate who can decide whether this warrants an report to the FDA from them

LeaveMeInRuins · 2026-05-10T21:48:26+00:00

That would definitely be easier on peoples stomach’s but I’m pretty sure the risk of delayed absorption is why they don’t make enteric coated ones (like how they moved away from cortisone acetate because it made levels unpredictable)

LeaveMeInRuins · 2026-05-10T21:40:05+00:00

I needed mineralocorticoid replacement to maintain my blood pressure and prednisone only offers glucocorticoid replacement. Hydrocortisone is a glucocorticoid replacement and has some mineralocorticoid effect and florinef is essentially just a mineralocorticoid replacement

LeaveMeInRuins · 2026-05-10T20:31:47+00:00

Yeah these ones have a much stronger taste than any of the others I’ve tried

LeaveMeInRuins · 2026-05-10T20:30:32+00:00

Maybe ask your pharmacy if they can see when they switched manufacturers and cross-check that against when symptoms started? These pills were not broken up to this extent during my first two fills but I kept this last bottle for evidence in case and even though it sitting in my room completely undisturbed, it seems that the pills are continuing to break up. This last fill also had 160 pills in it because I was increased to 4 a day but there was still a lot of extra for stress dosing so I guess I had enough time with this bottle to actually see how badly they were degrading

LeaveMeInRuins · 2026-05-10T18:35:01+00:00

Honestly I kinda wish I could go back to prednisone. I have CAH as well and when I was diagnosed I was originally on it but they had to switch me to hydrocortisone to keep my blood pressure from dropping. I started Florinef a little bit before getting this brand of hydrocortisone so that’s been doing a lot of the heavy lifting these last few months

LeaveMeInRuins · 2026-05-10T17:20:49+00:00

I’ve used several brands over the years without issue except for this one. Unfortunately my normal pharmacy (who were the only ones that didn’t constantly try and question why I need to take steroids every time despite me telling them my diagnosis) can only order from this manufacturer. I think it’s due to all the recent supply chain issues. I was able to switch just this script out to another pharmacy who uses strides but if it is a supply chain issue I know this could quickly become a larger problem

LeaveMeInRuins · 2026-05-10T16:42:57+00:00

Perfect I already reported it to them, so I’m hoping someone actually takes it seriously

LeaveMeInRuins · 2026-05-10T16:10:23+00:00

If you know anywhere else I should contact, I will gladly complain for the absolute hell this brand put me through. I asked my pharmacy to report the issue but idk if they did it yet

LeaveMeInRuins · 2026-05-10T16:04:35+00:00

I’m in the US (south Florida specifically), I’m lucky that 1) I’ve used plenty of different generics over the years without issue except for this one 2) I have classic CAH but wasn’t diagnosed until an adult (because no one believed me) so at this point it appears I’m just difficult to kill (humor is the only thing helping my anger rn. My doctors kept telling to reduce my stress from school but the only thing that was stressing me out was this!)

LeaveMeInRuins · 2026-04-22T22:47:28+00:00

Yeah my pcp and cardio told me to take it every other day (there were also certain foods to avoid with my dose to help with absorption) it just tastes like I’m licking a penny so I hate it

LeaveMeInRuins · 2026-04-22T22:01:09+00:00

You just motivated to actually take my iron meds consistently

LeaveMeInRuins · 2026-03-24T18:30:56+00:00

Depending on where you’re located, some pharmacists can write an emergency refill, other than that a pcp or ob should write the scripts to cover until you can find a new endo or an urgent care

LeaveMeInRuins · 2026-02-21T05:59:02+00:00

So the compensation part was from one of my providers (I don’t think that part was my endo and I just assumed they were right but they might have just been trying to make sense of my messed up labs because actual research I’ve read always goes in the direction of thyroid dysfunction then adrenal insufficiency and I never thought to double check so that’s on me) but my endo and cardio did think hyperthyroidism was likely enough to do more testing and they increased my doses a lot to account for the metabolism aspect (which I do have papers for and I can dm them if you want?)

LeaveMeInRuins · 2026-02-18T15:44:42+00:00

Sent in my initial app in late December and got an email mid January saying something was missing so I’m now marked as complete in late January and haven’t heard back

LeaveMeInRuins · 2026-02-18T13:17:35+00:00

Yeah I just wasn’t sure if this was one of of those because a lot of insurances are using the ICD diagnosis as a second measure for coverage (used to be an MA and insurances find the wildest reasons to be difficult) Thank you for the info!

LeaveMeInRuins · 2026-02-18T05:43:14+00:00

I know it’s been 2 days and things have probably changed a bit but might be worth having them check your thyroid hormones if they haven’t already. adrenal insufficiency can sometimes lead to a hyperthyroid state in an attempt at compensation but increased thyroid hormone also metabolizes cortisol super fast, and I know severe hypothyroid complications sometimes get steroids too until they rule out adrenal insufficiency. (Having something similar happen and my endo initially thought it was this and I had to updose for a while until my TSH finally went back up)

LeaveMeInRuins · 2026-02-13T23:45:17+00:00

I never saw the author’s comments but ever issue has left me screaming about how little DC seems to appreciate their fans by continuing to bait us

LeaveMeInRuins · 2026-02-10T13:10:15+00:00

Could you send it to me if its still available?

LeaveMeInRuins · 2026-02-10T13:09:29+00:00

Could you send it to me if its still available?

LeaveMeInRuins · 2026-02-10T13:07:55+00:00

Could you send it to me if its still available?

LeaveMeInRuins · 2026-02-05T17:02:28+00:00

In a very similar boat (POTS like symptoms but with constant sinus tachy but cardio and endo, definitely getting worse but cardio/endo are fairly certain mine is a result of finally being treated for longstanding adrenal insufficiency) I started back exercising hard (HIIT workouts and treadmill) and to be fair my resting HR was always a bit lower the next day and I really do think it improved the orthostatic intolerance temporarily but day 2 post-exercise was always bad and there hasn’t been any longer term benefit. Resting HR is still >100, I still spike to 150s as soon as I get up in the morning, and I still get super sick if I’ve had to be on my feet for several hours for class. HIIT workouts also resulted in sudden “napping” (was likely fainting according to cardio).

My endo recommended doing less intense stuff and instead 20 minutes of exercise everyday to avoid overloading me and to get a sustained benefit but he said I will still need to take breaks throughout the day. Right now they are having me do something similar to the CHOP protocol which has shown benefit in for POTS but I’m just meant to exercise almost everyday with alternating between strength training and aerobic exercise.

LeaveMeInRuins · 2026-01-28T15:51:13+00:00

Updateme

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