PMR Taper and pain

I've had to go back 3 times from 2.5. I am on 3. Mg now and can not believe what a half MG does for me. I wish it would help my Osteoarthritic hands. Tylenol helps. Squeezing a ball also helps.

There is no gold standard for tapering off prednisone. This video gives reasonable "guidelines" to follow.

I'm happy this doctor mentioned concomitant inflammatory arthritis. She also mentions twice a day or "split" (BID) dosing.

I discussed tapering at length with my doctor and did plenty of online research. What I discovered is a lot of the tapering exercise is about getting you adrenal glands to kick back in as well as concern over your PMR returning. Somehow I believe these are co-related but I have no basis for this opinion. My research told me that the problems with the reactivation of the adrenal glands seem to rear up around the 4-6mg of steroid range. Once I hit the 4mg per day range I started shortening my time on a single dosage and I also went down slowly between dosages. I moved from 4 to 3 by doing 3.5mg/day for 4 days, then did 3mg for only 17 days. I continued to reduce the time at each dosage level by 2-4 day. This reduced my tapering time significantly. My Rheumy permitted me to define my own schedule but I had to commit to returning to 5mg and contacting her as soon as any pain returned.

The doctor in the video mentions prednisone effects on the HPA axis.

I'm convinced that reactivation of my adrenals was most of what prevented me from tapering off prednisone. The whole reason for tapering prednisone slowly is because of adrenal insufficiency from "long term" prednisone use.

I took prednisone for 13 years for PMR which isn't supposed to last that long. Even I had to admit my symptoms weren't the same symptoms when I was originally diagnosed with PMR.

I hope your way of tapering works. I was seen by an endocrinologist because of a low cortisol level when I reached 3 mg. The endocrinologist said I shouldn't taper any lower until my cortisol level improved. I stayed on 3 mg for 6 months until the endocrinologist said my cortisol level was "adequate." Only then did my endocrinologist think that "it might be safe" to discontinue prednisone --- no tapering was necessary according to the endocrinologist.

Perhaps I was overly cautious but I was reluctant to just stop prednisone abruptly even at the low dose of 3 mg. I did a relatively fast taper from 3 mg to zero over a couple of weeks I only went to zero when my endocrinologist reassured me that I could restart prednisone again "for any reason if I felt the need." None of this would have happened except for being on a biologic for PMR.

My endocrinologist just wanted to be part of the decision making along with my rheumatologist if I decided to take prednisone again.

I needed prednisone again when an ophthalmologist put me back on 60 mg within a week of tapering off. The reason wasn't because of PMR or GCA though. A different autoimmune problem flared up.

My ophthalmologist had no intention of keeping me on prednisone "long term." My ophthalmologist, rheumatologist and endocrinologist all agreed that a biologic would be "optimal treatment" for all my autoimmune conditions.

When the right biologic was determined I quickly tapered off prednisone again because I wasn't on prednisone long enough to affect my cortisol level. I tapered off prednisone again --- going from 60 mg to zero in a couple of months.

I have been off prednisone for nearly 3 years but I'm still on a biologic.

@dadcue I cannot imagine 13 years on steroids. I had more than my share of side effects and it will be about 6 months total for me. I wanted off if for no other reason than the side effects. I fought going on them for 3 years but when Covid sent my inflammatory markers sky high again I caved. I started at 5mg/day went to 7.5 and landed at 10 to cut the pain. I then had to stay there 6-8 weeks longer than my rheumy wanted because my neurologist was running tests and said he might put me on 30-40mg/day. No good reason to taper if I'm going to stop mid-stream and go that high. Fortunately I could be treated with steroid injections in my neck from a pain management doctor. As soon as I found that out I started tapering.

I see an endo as well, but not for PMR. She does follow my PMR with interest and has shared a little with me but for now has stayed hands off. I see her for my hypothyroidism which is treated with Synthroid and 5mcg/day of T3. The steroids I take for PMR are known to interfere with your bodies ability to convert Synthroid (T4) into T3. The lab work since I started taking the steroids clearly shows I am having problems. The endo is not addressing it since I am tapering off the steroids. We will simply wait to see if my body can pick back up where it left off.

The endo is working to identify the cause for my hyperparathyroidism. This has been going on for months and we are closer but not there yet. I am low on vitamin D, apparently that is super common all over the US because fewer and fewer people are going outside in the sun without sunscreen. I now take D supplements to bring that into the normal range. Unfortunately it did not also bring my parathyroid numbers into normal. Next up is to take calcium supplements. That will take 6-12months to show up if that is the cause. If it is not a calcium deficiency then it is most likely a benign tumor. This is when I want a Fast Forward button on my health care because being on this path is like watching frozen molasses drip.

Dr. Megan - Prednisone Pharmacist on YouTube has a whole series of useful information. She makes it easy to understand the whole cortisol process.

I liked her lists of what to eat and what to avoid.

I am two years in with PMR and have suffered a lot. Presently on my fourth prednisone taper. How long do most cases of PMR last? I am exhausted from it all and have no quality of life.

I'm beginning to put those 13 years behind me. I'm more than ready to move on.

My rheumatolgist said my combination of autoimmune conditions was "complicated." I also had numerous complications from long term prednisone use.

I think anyone taking prednisone for a long time should automatically be referred to an endocrinologist.

How did a neurologist get involved in your case? If your case isn't complicated already --- I suspect it will become complicated soon.

A neurologist got involved in my case too. I had something called trigeminal neuralgia which was infinitely more painful than PMR. Trigeminal neuralgia causes facial pain but it never should be confused with GCA.
https://www.ninds.nih.gov/health-information/disorders/trigeminal-neuralgia#:~:text=What%20is%20trigeminal%20neuralgia%3F,of%20the%20head%20and%20face.
I called trigeminal neuralgia my "inflammation alarm." Whenever my inflammation levels got too high, trigeminal neuralgia would go bonkers.
https://pubmed.ncbi.nlm.nih.gov/31741343/

Thank you for posting this.

I totally agree, trying to find a right lower pace and go from there. Sometimes I go up 1mg and I’m good until I’m not. Started at 14 mgs @ for 14 months now at 3.5 but going up a half mg and down as needed. Pain is my biggest deciding factor. Hang n there!