Prednisone - steroid use questions?

Hi @julbpat, It sounds like you have a lot going on also. I have small fiber PN but I have taken prednisone in the past when my polymyalgia rheumatica (PMR) was active and I was hurting all over. You are right, for something like PMR, the relief is almost immediate or within a few hours after taking the prednisone. Immediate pain relief after taking prednisone is one of the ways rheumatologists use for diagnosing PMR. I had not heard of PMR before when was first diagnosed and my rheumatologist explained it to me in layman's terms that it was like arthritis all over the body.

Here is some information on the topic:
"Why would a patient be prescribed prednisone?
Prednisone treats many conditions such as asthma, allergic reactions, arthritis, inflammatory bowel diseases, adrenal, and blood or bone marrow disorders. It works by decreasing inflammation, slowing down an overactive immune system, or replacing cortisol normally made in the body."
-- Prednisone: Uses & Side Effects: https://my.clevelandclinic.org/health/drugs/20469-prednisone-tablets

My rheumatologist did a trial with Prednisone a year or so ago, checking for changes in my sed rate. It didn’t change, so he concluded that I didn’t have PMR. Steroids certainly do help my pain! I think lately I’ve been taking them about half the time. My overall pain comes on more quickly these days than it did even six months ago. I tried a 2 mile hike recently that I was doing every week as recently as last Spring. It was painful from the very first step, but I stubbornly persisted. My physical therapist gently reminded me that the pain was my body’s way of telling me not to do it! But sometimes I just want to try. It’s scary how the neuropathy is progressing.

You might want to read through these two papers, especially the second since the prednisone gets rid of the pain. Over doing it can definitely make the pain worse but finding that fine line can be tricky.

— Erythrocyte Sedimentation Rate and C-Reactive Protein: Old But Useful Biomarkers for Pain Treatment: https://www.practicalpainmanagement.com/treatments/erythrocyte-sedimentation-rate-c-reactive-protein-old-useful-biomarkers-pain-treatment
— Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: a four-point guidance: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/

Steroids (Methylprednisolone in my case) will completely stop the neuropathy pain. Low tension glaucoma means steroid therapy is not a good idea.

Yes, the same here - glaucoma plus tendency towards lung infection.
Sometimes we need to weigh the benefits (being able to function) against the risks. In my case steroids sometimes win.
Sue

Thanks Sue. I do agree with the weighing the benefits and that is where I am stuck - I would need a higher sustained dose of steroids than what a Medrol dose pack give, and I cannot find anything to support a specific dose for this so I assume my PCP (only doctor I see right now besides the eye doc) will be just as clueless. Then (and this will probably sound stupid), I would want to take them when I can maximize my pain free time doing something enjoyable, not working, as I know the fun will not last.

Yes, one of the crazy mind games with neuropathy. Right now I feel pretty good, because I’ve been taking Prednisone 10 mg for 5 days. I’m not hobbling around. I can bend over to pick something up with minimal pain. So I’m tempted to do all the things I miss - puttering in the yard, going for walks. But when I stop the steroids in another few days, I’ll be back to square one (or less) and my PT will have to fix the damage. And I’ll start the struggle all over again.

If I can correctly recall you had earlier found tegretol to be quite helpful. Have you discontinued the use of tegretol and if so why? I was going to convince my PCP to prescribe that for me.

I am still on the Tegretol, and it is working great to eliminate many of the neuropathy symptoms. Things that are gone: burning pain in my toes, heart palpitations, skin that was so sensitive to light pressure. I am so grateful for that. But the neuropathy continues to progress. I guess the way to describe the pain I have now is aching, tender, sore, constant. I get some relief with Percocet 7.25mg, 1/2 tablet 2-3 times per day. Baclofen helps when I’m trying to nap, or feel extra pain after using my body by taking a walk, or physical therapy. So Tegretol doesn’t eliminate all my pain, just the endless burning.

Hope that makes sense. I am going to a Dysautonomia Clinic in a few weeks, reluctantly. I don’t know why I’m resistant to that, especially since I have a resting heart rate in the 90’s now, and constipation and/or diarrhea are a constant now, instead of occasional. I feel overheated much of the time, and my face sweats several times a day. All signs of Dysautonomia.