Adrenal damage

I've been on pred for 2 years straight. My IBD symptoms are fine, but I can't seem to get off prednisone. Going below 10mg is really hard, but now I'm on 7.5mg and my days are pretty wrecked. I have useful energy until about 4pm and then I have to nap for 3-4 hours. It's terrible. Again, my bowels are fine.

My doctor suggested doing 1mg pills so that I can go down by 1mg at a time, but that would take months. I need to get off this stuff. The information I'm having a hard time finding is whether or not prednisone can permanently destroy your adrenals, or if this is just going to be a long process?

One study I read said that people had adrenal insufficiency up to 20 weeks out after stopping pred, but eventually they recovered. Yet in the focus forums, some individual patients are saying they were never able to get off pred at all and need to take 5mg daily maintenance doses.

I'm waiting for a 3 month referral to an endocrinologist to go through, but in the mean time I'm hoping someone here might have some info to offer? Has anyone here been on a very long stint of pred but was able to get off it in the end?

I don't mind if this is going to take a long time, I just want to know that my adrenals aren't destroyed!

the ginseng effect is totally like licorice.

I am in the same situation, i takerecently only 4 mg medrol since 2 years.
.terrible..I asked m my GI, he told me below 10 mg there is no problem if i zake long time..but i would like to stop taking pred....
Othervise if your body dont has enogh cortisol it can cause diarhea and similar effect..

You will most likely be able to get off prednisone, though it takes awhile. Going to an endocrinologist is a good move.

My husband was on prednisone non-stop for about 3 years. When he finally started to taper he had difficult withdrawal symptoms. What an endocrinologist may likely do is that once you get down a pretty low dose of prednisone, you will switch to hydrocortisone. Hydrocortisone is not in your system for as long as prednisone, so the level of cortisone in your body will start to go up and down as it does normally, and your adrenal glands will start to wake up. It took about a full year to completely wean off of steroids, because the symptoms were troubling. But it all worked out well in the end.

If you've been on pred for 2 years straight, I'd try going down half a 1mg pill at a time, even a quarter. 10mg is more than what your adrenal glands can produce naturally, so it's likely your production of cortisol is knackered. Probably not permanently, but you'll need to taper very, very slowly. Not having a go at you personally, but I find it strange how people are terrified of the biologics yet don't seem to fear the very worst medication of all: prednisone. 100% guaranteed side effects and easy to build up a (physiological) dependency.

Well said NCOT!!! Too too true.

Clo

NiceCupOfTea said...
If you've been on pred for 2 years straight, I'd try going down half a 1mg pill at a time, even a quarter. 10mg is more than what your adrenal glands can produce naturally, so it's likely your production of cortisol is knackered. Probably not permanently, but you'll need to taper very, very slowly. Not having a go at you personally, but I find it strange how people are terrified of the biologics yet don't seem to fear the very worst medication of all: prednisone. 100% guaranteed side effects and easy to build up a (physiological) dependency.

I've tried all biologics. They either didn't work at all, or they partially worked and then failed. Rectal meds also don't work. I'm one of the 30% of patients who don't respond well to modern medicine. I'm not getting surgery either, so that means prednisone. I've achieved remission twice before using prednisone plus other methods, so it's possible. However, unlike in the past, this prednisone stint has been super long, so I'm in unfamiliar territory. The reason why I've been on pred for so long is not because my body is non-responsive, but because every time I get down to a low dose, my lifestyle suddenly becomes extremely stressful then I flare again. The timing has been terrible. This time, I have a very controlled, quiet, peaceful lifestyle available. I'm just finding the tapering difficult, is all.

Thanks for your feedback!

NCoT my colon and situation much like yours. Pred was no longer the automatic answer any more. My colon was studied after removal and totally inflamed(no surprise to me). After 32 yrs it was time. In 32 yrs I was on Pred say 10x. Never for long long periods, weeks and weeks but never months and months except last time which was many months. Horrible drug but it worked when needed. Prayers for all living with UC

NiceCupOfTea said...
Was that remission confirmed endoscopically? Don't mean to sound sceptical, but prednisone is also a notoriously poor healer - if anything it hinders wound healing rather than enables it. I was a bit like you in that only pred worked - or at least appeared to work. But it didn't heal my colon. And I was on 40mg of the stuff for weeks before surgery, plus I'd been on it off and on for years prior to that (but mostly on for 2 years - every time I tried to taper off it I ended up back in hospital). Anyway, they did a pathology report after surgery and my colon was described as severely inflamed throughout - not a single bit of it was disease-free. Genuinely, that was a surprise to me, as I'd been on pred for so long I thought it must have done something.

I'm sorry the biologics didn't work for you. I hope you can avoid surgery, but please do be careful with pred. It's not a benign drug.

The reason why you're skeptical of prednisone's abilities is because you're thinking modern medicine is the only thing I used. It wasn't. I used many other things alongside prednisone, and then when I'm done with prednisone I continue to use those things. No, I did not have my remission confirmed by scope, but I didn't need to. I had 2 years of a care free, healthy life. No meds, perfect BMs, I could eat whatever I wanted again.

Like I said, my bowels are fine right now, it's the rest of me that is struggling to get off pred. I appreciate your skepticism, but enough already please? I don't need to validate my bowel's condition. I know what it is. I have 1BM per day, perfectly formed, no blood or mucus. They're not putting a scope up me to confirm that because it will just make me flare. I hate GI doctors. After the hell they've put me through over and over and I will never trust one again. Natural healing all the way for me, except prednisone of course.

Thanks for your time.

I had adrenal fatigue from long term steroid use - I needed a new hip in my 30's probably from the steroids too. I wouldn't be so dismissive of people's warnings about long term prednisone use. One of factors in a recommendation for surgery is the inability to get off of steroids for treating your IBD.

One time I had Prednisone withdrawal/adrenal fatigue after a flare and 21 day hospital stay. My GI saw how bad a shape I was in from it, so while I was in his office he called his endocrinologist doctor friend who treated a lot of bodybuilders who dealt with the effects of steroids. Guess what they prescribed??? Dexamethasone. The same drug that they are using for all the people who are currently in the hospital with covid. So it might be in short supply right now. It worked really well for me and I felt better in a few days and I was off of it completed after 21 days.

this very nice...realy..and congratulaion to you!
but please dont forget to mention that surgery can make complication(maybe,...because of it this is risky)and you have at least 3- 8 bm/per day which is absolutelly not normal and these bm are luqiud...
My GI told me under 10 mg the pred is Ok.

I have 2-4 BMs per day in remission (confirmed by a scope), it really doesn't bother me because they're not urgent. My GI said he has some patients in remission with 5 BMs per day.

I was mostly on doses of 5-15mg pred during the 2 year stint (it was only ever a tool for symptom management as it couldn't get me into remission). I ended up with severe osteoporosis by age 35, and having to take an osteoporosis drug (also a biologic) which I hate, but the prospect of a spinal fracture was more scary.

Because remission is about mucosal healing and not number of bowel movements?
I don't know the reason why, but I would guess after 4 years of continuous flaring the nerve function in my bowel is permanently altered. I don't make "normal" poops any more either, I think that has to do with narrowing/scar tissue in the sigmoid colon.
I do eat a lot of fibre, including 1 litre of vegetable juice every day. That probably adds at least 1 BM per day.
As long as I'm pain free and don't have urgency I'm happy.

When I was last in remission I had 2-3 BMs per day depending on what I ate, and occasionally they were urgent. It's normal for UCers in remission to have IBS. The mucosa has suffered damage, sometimes scarring, and the nervous system of the bowel is overly-sensitized. It doesn't mean you're not in remission.

As long as I don't have blood and mucus, my BMs are formed, I can eat practically anything, and my BMs are under 5 per day, I would call that remission. I know people with IBS who have more BMs than that.

Thanks for the advice about quartering the prednisone pills. That's going to be tough. I had a hard time going from 10mg to 7.5mg but I seem to be stabilizing now. I'll try 5mg in a couple of weeks. We're going to take this nice and easy!

My BMs temporarily increase when I lower pred, and I know from research that this is due to the drop in cortisol. Low cortisol = more BMs. Interestingly though, I find my body heals better once I start getting really low in pred. It's like my immune system wakes up and starts repairing things.