Adrenal damage

I have 1-3 BMs a day and am in remission.

Delta_hippo said...
I wonder if you could be switched to budesonide as a way of getting off prednisone but still having some steroid and then weaning off that? But I am not an expert at all this is just an idea. It is supposed to be gentler on the system as more gut focused than systemic.
I have used licorice tea post steroids to help adrenals recover along with magnesium at bedtime, b vitamins and plenty of sleep. You’re supposed to drink the tea around 8am for maximum benefit I think. Be careful if you have high blood pressure in which case may not be suitable or need the DGL version.
Good luck with it all

How much prednisone were you on when you started the licorice root?

Hey Van,

I can totally relate to the seemingly impossible task of completely getting off prednisone and feeling like crap because of it.

One thing that has been a game changer for me is hormone therapy. I had a stigma I had to overcome around this subject but it has really made a huge difference. (I'm specifically speaking about testosterone.)

Due to all the UC drugs, I was severely deficient with so many "endo" markers, and testosterone has helped drastically. (Not to mention its actually used to treat UC in some cases.) The biggest difference is that it has given me energy, better sleep, mental focus and honestly just a better outlook on life. Prednisone I feel like literally sucks the life out of me, and testosterone counteracts a lot of those negative symptoms. (even bone and joint health)

Its good your going to see the endocrinologist. I would ask when they do your blood work (I'm sure they probably are anyway) to check all your hormone levels too. I know low testosterone can also greatly effect thyroid as well.

I also started getting iron infusions, and vitamin B shots. Due to loss of blood and I think prednisone also contributes to anemia, which directly effects your energy levels.

Just my two cents.

Good luck!

UCinsouthfl said...
Hey Van,

I can totally relate to the seemingly impossible task of completely getting off prednisone and feeling like crap because of it.

One thing that has been a game changer for me is hormone therapy. I had a stigma I had to overcome around this subject but it has really made a huge difference. (I'm specifically speaking about testosterone.)

Due to all the UC drugs, I was severely deficient with so many "endo" markers, and testosterone has helped drastically. (Not to mention its actually used to treat UC in some cases.) The biggest difference is that it has given me energy, better sleep, mental focus and honestly just a better outlook on life. Prednisone I feel like literally sucks the life out of me, and testosterone counteracts a lot of those negative symptoms. (even bone and joint health)

Its good your going to see the endocrinologist. I would ask when they do your blood work (I'm sure they probably are anyway) to check all your hormone levels too. I know low testosterone can also greatly effect thyroid as well.

I also started getting iron infusions, and vitamin B shots. Due to loss of blood and I think prednisone also contributes to anemia, which directly effects your energy levels.

Just my two cents.

Good luck!

Thanks for your response! I already take DHEA and pregnenolone. I agree with you that somehow prednisone contributes to anemia. I know that it suppresses bone marrow which leads to slow red blood cell turnover, but I think it directly affects iron absorption somehow. No proof of that, just my suspicion. Whenever I can get off prednisone completely, my iron absorption comes right back. As long as I take pred, I need iron infusions.

I haven't had serious inflammation for about 5 months or so, but getting off pred has been a nightmare for my adrenals. I've still needed iron IVs this whole time.

DHEA and pregnenolone are super helpful. I have managed to avoid serious damage to my body from pred by taking those. It's incredible to me that doctors don't at the very least prescribe pregnenolone when people on are on prednisone. Preg was used before pred was discovered in the 1940s as the primary treatment for inflammaton. Without it, pred would have destroyed my body.

UCinsouthfl said...
Hambo88 - Yes, now my testosterone levels are good now. I take cypionate 200mg a week, split in two injections a week. I'd say it helps more with my energy levels, and overall mood. At first I get a little boost from being on prednisone but after any length of time, it begins to suck the life out of me. I also take a DHEA supplement. As far as the weight gain side effect of prednisone, the testosterone allows me to have enough energy to continue to exercise, in turn helping with the "moon face", and "belly fat". Exercise also greatly helps with bone health..

VanJordan - Completely agree with the anemia/iron absorption. Maybe next time you get blood work, have them check your testosterone levels. It could be something to help your body get over that hump of feeling so crappy when trying to get off the pred completely. I'm going to look into the pregnenolone more too! Hope you feel better!

My T levels have been checked. Normally as I'm getting off prednisone, my T is above normal, not below. How weird is that?

I know that pred increases DHT levels in both men and women, but it simultaneously deactivates a lot of T production in men. Maybe as I get into the lower doses of pred, my native T production comes back online, so there is too much of it due to the added effect of pred. I'm not sure.

It may simply be my adrenals.

Delta_hippo said...
Hello again
I had just finished a course of budesonide when I discovered licorice tea. I’d been looking into adrenal support after several rounds of budesonide following a fairly heavy course of pred. I’m also on biologics. I just felt constantly crap and wondered if my adrenals needed some help. Also the most recent biologic stelara has given me psoriasis so I have to use a little steroid cream every few days to stop that escalating.
I have been sleeping better and the tea is quite nice actually so I’ll keep it up. Hope you are doing okay.

Interesting that stelara gave you psoriasis, when it's used to treat psoriasis in others.

I haven't been using licorice because I found out that it just keeps the steroid in you system longer, which provides relief but it doesn't encourage the adrenals to come back online. So I am just doing a really slow taper while providing a lot of nutritional support... like vitamin C, zinc, vitamin D, magnesium, boron, etc. All the nutrients the adrenals use.

Hambo88 said...
it sounds very interesting to me that pred has negative effect to iron infusion..
But i feel always myself tired, and i dont have energy and unfourtunatelly when i take any iron pill it causes always diarhea to me but when i take these iron pill then my energy will go back to the normal i go to garden to work etc...

Hambo - Yes, iron is another huge deal in the way I feel. I can't take any oral iron supplements. They destroy me Infusions are the way to go, if they are available to you.

After being on prednisone since April I just weaned off with a sawtooth or alternate day taper. When I tapered down to 10mg and when I was ready to taper to 7.5mg, I alternated each day. So Day 1 was 10mg and Day 2 was 7.5mg, Day 3 10mg etc… this alternate day cycle for 10 days. After 10 or so days, then stay just on 7.5mg for 10 days or so. Then again with 7.5mg and 5mg etc…

If you search on YouTube for sawtooth prednisone taper a doctor explains it. Unfortunately he doesnt hold the graph close enough to his webcam and you can’t see it. He also says he’s never seen adrenal issues with prednisone and those taper symptoms you are actually experiencing arent adrenal issues but actually prednisone withdrawals.

I just got off prednisone and I feel great. That video gave me confidence my taper symptoms werent adrenals but withdrawals and that made sense because I get every side effect in the book. Even at 2.5mg wild stuff. Just be gentle with yourself your almost there. Go as slow as you can.

I’m grateful Remicaid is working for me, I’ve been off prednisone 2 weeks now since April. Amazing. All the best to you.