PMR Dosages and Managing Symptoms

Wow! I am curious as to what your symptoms were. (Only disclose if you are so disposed.) As to the book... The LDN research Trust has put two books out titled just that. II is the mort recent research and put out in 2020, so pretty recent. Although doesn't talk about its use in Long Covid. Too recent. Amazon has it.

Oh …LDN and not LDH. I don’t know too much about LDN. I have never discussed it with anyone. I know from reading things on forums that many people seem to say that it works.

I can describe what my symptoms were when I was diagnosed with PMR.

My rheumatologist now says that I have a full range of rheumatology problems.

I'm tapering from 15 to 7.5 mg daily. The bodily aches have greatky increased as I do so. This a.m., I started taking a Gabepentin and will do so at night also. I also took aspirin and the aches have subsided. I'm seeing a new rheumatologist but not until March so I'm lacking that support now. I also think I might have other autoimmune issues. I do have Atypical (Smoldering) Myeloma, not sure how that affects the PMR.

Do you mean you went from 15 mg down to 7.5 in one taper? That might be too much too fast? For both of my occurrences, once I got down to the 15 to 10 range, I used smaller tapers and kept a daily pain log. If my pain level was higher than 2, I increased the dose to half of what I previously tapered to see if I still had the pain the next day.

These are just my thoughts on the subject of prednisone withdrawal because 40 mg of prednisone was what I started with when PMR was diagnosed. My rheumatologist wasn't too interested in telling me how much prednisone I should take. My instructions were that I should find a "stable dose" of prednisone that works to control most of my pain and other PMR symptoms. My rheumatologist only frowned when I reported back that 40 mg was the dose that worked to control everything.

I was not a stranger to taking prednisone when PMR was diagnosed. I took prednisone for other autoimmune conditions for 20 years before PMR was diagnosed. My ophthalmologist prescribed prednisone for uveitis which is eye inflammation associated with inflammatory arthritis. My usual treatment for flares of uveitis was 60-100 mg of prednisone. I was able to taper off in a month or two as the eye inflammation decreased and the body aches and pain improved. My ophthalmologist once made the comment that I was "skilled with prednisone tapers."

PMR changed everything I thought I knew about prednisone. I was diagnosed with PMR and took prednisone for more than 12 years prescribed by my rheumatologist who said my primary diagnosis was PMR with a "history of" inflammatory arthritis. The first thing I needed to understand was that having one autoimmune condition puts you at risk for other autoimmune conditions. The idea that I had multiple autoimmune conditions was difficult for me to understand.

I have 20 years of short term but frequent high dose prednisone use for inflammatory arthritis with uveitis. I have an additional 12 years of long term, moderately high dose prednisone use to treat PMR. With all that experience, I thought I knew everything there was to know about tapering off prednisone. When I was unable to taper off prednisone after PMR was diagnosed, I became interested in the subject of prednisone "dependence" and prednisone "withdrawal" symptoms. Both of these are related to adrenal insufficiency caused by prednisone use.

Your body needs cortisol which is a hormone essential to life. Cortisol is called the "stress hormone" but it is a hormone that regulates many things throughout the body. The following link explains it better than I can.
https://my.clevelandclinic.org/health/articles/22187-cortisol#:~:text=Cortisol%20is%20an%20essential%20hormone,Suppressing%20inflammation.
I only wish to mention all this because the body regulates the amount of cortisol it needs on a minute by minute basis. Too much and too little cortisol circulating causes a plethora of problems. When cortisol isn't regulated, inflammation isn't regulated along with many other things that aren't regulated. The body will attempt to adjust cortisol levels and compensate for too much or too little.

When we take prednisone, the adrenals stop producing cortisol. The way I think about things now is that the amount of cortisol we need on a daily basis is very complicated. Prednisone "overrides" how cortisol is regulated in the body and we assume manual control of something extremely complicated.

Unfortunately my body got dependent on me deciding what dose of prednisone I needed on a daily basis. I was forced to conclude that I had no idea how much prednisone that I needed. Now that I'm off prednisone, I let my body decide what it needs!

I have been treated for PMR since July. I am on 15mg of prednisone. Waiting for my labs (CRP) to come down so I can start to taper.

Question: how does activity affect those of you who have had PMR for a while. It seems if I am very active one day, the next day I am exhausted! Is that also your experience? My pain is pretty much controlled on the prednisone but I don’t like the prednisone side effects.

Thank you.

After 2 plus years on prednisone, I have tapered to 1 mg for a month and then .5 for a.month. I started at 15 mg and tapered slowly. I am concerned about stopping cold turkey even though my taper has been slow. Does anyone know of another more gradual taper than cold turkey? Thanks so much. The information and collective wisdom from this group has made a huge difference in my journey.