Balancing corticosteroid therapy

[Chiron]

I'm so weak right now, but I will try to be detailed.

Having an IBD (ulcerative colitis) flare. Coming out the other end of it, but it's been a rough go. Got an e. coli infection that took almost a month to properly diagnose (bad healthcare system). It did some real damage to my gut in the mean time.

Long story short... on 40mg prednisone (corticosteroid). I really desperately need help preserving my body while on this stuff. The atrophy to my body gets extreme, especially in the arms and legs. My skeleton is already compromised according to DEXA. I used to take high dose curcumin so that I didn't have to take as much prednisone, but then I found out that it was chelating all the iron out of my body and I became extremely anemic. So, no more curcumin for me.

My usual strategy is to take 50mg DHEA and 100mg pregnenolone on every day that I take prednisone. It helps preserve body weight, muscle, and some adrenal functions. But I don't feel like it's the total picture. Pregnenolone is a top of the adrenal cascade, but the adrenals have to be doing the actual conversion for it to be worthwhile, and if the adrenals are offline due to steroids, then I don't know if the conversion is even happening. I don't know enough about the science of it to know of corticosteroids even stop the adrenal precursors from converting.

i.e. while I'm prednisone, if I dump 100mg of pregnenolone in the body, does it become other hormones or does it remain pregnenlone?

DHEA does seem to help directly. I maintain some muscle tone and, god willing, maybe some bone density.

My MD is pretty useless in this department. She doesn't know about hormone anything, and the endocrinologist I went to said "I don't know anything about pregnenolone so you're on your own with that one." This is the top endo in my city.

If someone here could give some recommendations, I will take them and do more research. TIA

 

[Wishful]

"I don't know anything about pregnenolone so you're on your own with that one."

That's pretty sad, but at least he was honest about his ignorance. That's better than the ones that prescribe dangerous drugs that they don't understand, or ones that try to hide their ignorance in other ways that are bad for the patient. The doctors wiling to make the effort to learn about a new (to them) drug or disease are unfortunately rare.

Prednisone gave me temporary remission the first two times, but then stopped working, so I didn't study it further.

If your prednisone is for immunosuppression, are there no alternatives to it? I'm just wondering whether there are safer treatments that aren't used because they require more work from the doctors.

 

[Chiron]

If your prednisone is for immunosuppression, are there no alternatives to it? I'm just wondering whether there are safer treatments that aren't used because they require more work from the doctors.

I got onto pregnenolone because my research indicated it was the premiere drug for inflammation prior to prednisone's invention in the 1940's. Usually deadly inflammation in the body gets out of control because the adrenal cascade suffers from major cortisol steal, and the body loses its ability to produce DHEA. Everything gets channeled into the survival mechanism of the cortisone pathway. By giving pregnenolone, all pathways get fed, and in theory there is balance.

Prednisone was so novel and so targeted to the downstream cortisone pathway that modern medicine ditched the other approaches. I can't really argue with this. When I flare, it's not like taking a bunch of pregnenolone stops it. I'm not aware of an effective alternative, and I've tried everything. More recently I was on really high dose curcumin phytosome with boswellia for 6+ months. It was helping me slowly achieve remission. Then I flared this September, and honestly nothing stopped it except high dose prednisone.

There are lots of herbal additions... curcumin, boswellia, andrographis, wormwood, butyric acid, PHGG, avoiding proteobacteria-feeding foods (meat, high sulfur), zinc carnosine, etc etc....

All of that combined did not stop my flare's onset, but prednisone did.

So, who can argue.

What I want to know is how to mitigate the side effects of this drug. My arms and legs are like twigs. I look like I came from a concentration camp. My skin is pale and thin (pred inhibits collagen production). I have gross stretch marks already. My muscles are wasting, and my bones are surely not far behind. DHEA does help but it's not complete. And the fact is, high cortisol, whether natural or synthetic, ages the body across the board. I look like an old man.

I wish there were more readily available expertise about this kind of hormone stuff. But maybe there is no way of getting around the fact that pumping one's body with 40mg of prednisone is going to have deleterious effects.