Any Tips For Tapering Off Prednisone?

Tapering is a process where you need to listen to your body and adjust your schedule accordingly. I started on 15mg in February for inflammation but increased in March to 25mg after the PMR diagnosis. 15mg didn't do much for me. My rheumatologist asked me to taper to 20mg in April and I was feeling pain again but I listened to my body and adjusted it to 22.5mg. After 3 weeks I went down to 20mg. I noticed that by the 3rd day I had some pain that increased slightly on day 4 then started going down again. By day 7, I was back to feeling normal at the new dose. I was also given an additional diagnosis of SMM by my hematologist oncologist. At this point, I waited 3 days after pain subsided and tapered down another 2.5mg. Using this plan I went down to 15mg today. If my body reacts as before, in 10 days I will go down to 12.5mg. Once I reach 10mg I slow down the taper using 1mg tablets. I should add that I can't get an accurate assessment of what SMM risk category I fall into until I am off prednisone. SMM factors are suppressed by prednisone.

@dadcue I thought symptom return meant a flare. If I understand your comment prednisone withdrawal has symptoms also. What would they be? How to distinguish?

@pmrnew At 7.5mg Prednisone level, I was forced to look for an alternative because I ended up with Macular Degeneration. My ophthalmologist suggested Hydroxychloroquine and my Rheumatologist agreed. I gradually switched over a months time and continued to improve. It took another year before the PMR went away, but I haven’t had any signs of a re-occurrence for three years.

@sassysaveur

Symptoms of prednisone withdrawal are similar to PMR symptoms so it is hard to differentiate one from the other. It is important to know which is which but I could never say I knew for sure which one was the problem. Both PMR and prednisone withdrawal cause fatigue, muscle aches, and joint pain. I tended to believe my symptoms were caused by both PMR and prednisone withdrawal most of the time.

What you should do for a PMR flare is different from what you should do for prednisone withdrawal. For a PMR flare you would most likely want to increase your prednisone dose. For prednisone withdrawal symptoms you probably want to keep you dose the same or taper more slowly. Prednisone withdrawal symptoms might go away in a couple of days whereas pain from a PMR flare might get worse.

There was another problem I had called adrenal insufficiency. Ideally, that should be verified by testing a cortisol level. You need to have prednisone out of your system first by being able to be on a very low dose of prednisone. It is debatable how low of a dose but my endocrinolgist said I neeeded to be on 3 mg or less of prednisone. On top of being on a stable low dose of prednisone for an extended period of time, my endocrinolgist said I had to not take my 3 mg dose for 48 hours before an a.m. cortisol level could be done. An a.m. cortisol level had to be done between the hours of 8 a.m. and 10 a.m. according to the lab that did my cortislol level. All the rules that needed to be followed would have been impossible for me to do if PMR wasn't controlled. My PMR was controlled by Actemra at the time my morning cortisol level was done. It would have been impossible for me be on low dose of prednisone and hold my dose for 48 hours without Actemra.

My cortisol level was low so I had to stay on 3 mg for 6 months until another cortisol level was done. My second cortisol level was called "adequate" by an endocrinolgist. I was told that it "might be safe" to stop taking prednisone. My endocrinolgist said 3 mg was a low dose and as long as my cortisol level was adequate then I could simply stop taking prednisone. The scary part was whether or not my cortisol level would be adquate if I was in a car wreck or something very stressfull happened. That was when my need for cortisol would increase dramatically. My endocrinologist gave me a direct number I should call if anything remotely stressful happened. She said it would be best to call her first but I wasn't required to call first. My instructions were I should take prednisone again "for any reason if I felt the need." The intent was to be safe rather than be sorry that I didn't take prednisone.

My symptom of adrenal insufficiency was mostly "overwhelming fatigue" whenever I tried to do anything at all. I tried to exercise but I wasn't able to recover very quickly after small amouts of exercise. My "recovery time after exercise" improved greatly over time but it was nearly a year before I could do as much exercise as I wanted to do. I had muscle aches and pains too but those could be explained by muscles disuse and being out of shape. A physical therapist was very helpful to me during my recovery period after having adrenal insufficiency.

Technically, I still have PMR but now I'm treated with Actemra rather than prednisone. I took prednisone for 12 years for PMR. My recovery from "long term prednisone" is still being monitored by an endocrinologist. I continue to see a rheumatologist for PMR and some other autoimmune conditions.

@hosers2

I think Hydroxychloroquine might be a good option for many people with PMR. I don't know why it isn't tried more often. I guess it is because it would cost a lot of money to do the research to see if Hydroxychloroquine works for PMR. Also, Hydroxychloroquine can't be patented so nobody would make money to recoup the research costs. Hydroxychloroquine is a off-patent generic drug, which significantly reduces the financial incentive to fund the massive costs of new large-scale clinical trials.

There aren't any clinical research trials that say prednisone works either. It just became the standard for PMR by default because PMR pain was quickly relieved by prednisone. Historically, the research for prednisone bypassed large, rigorous clinical trials because the "steroid test" was considered a diagnostic tool all by itself. I don't think that would pass muster for getting a medication FDA approved today.

@dadcue During my 3 years of PMR, I was on a blog similar to this mayoclinic called Health Unlocked, centered in Great Britain. When I told them of my experiences with HCL, they scoffed at the idea, saying Prednisone was the only cure. They went so far as to reprimand me several times for relating my experiences using Pred and HCL.
Another interesting note: I have always related the cause of my PMR to taking Simvastatin for three years. When I made the observation that the statin pains were identical to PMR pains, I was, once again, reprimanded by the HealthUnlocked organization. Yet, almost every single PMR/member contributor to the blog were taking statins and had for years. And not one was willing to forego taking their statin for even a month (just to make sure the pains were not being caused or enhanced by their ingesting statins). And there are no clinical research trials that I know of by the pharmaceutical companies. There is BIG money in convincing doctors to put the entire world population on statins.

@leetaanderson I have normal sed rate and CRP and yet definitely have PMR. The GCA I have the symptoms yet my doctor remains unconvinced. I am confused because I had intense scalp tenderness for months … I am being treated in high dose but this non commitment to diagnosis is driving me crazy. Your experience with questionable diagnosis or anything else is appreciated. Thanks.

@jabrown0407
This is the single best summary of PMR and its treatment that I have ever seen.

You describe the reality of PMR clearly and accurately. I particularly value your analysis of "flares", your description of prednisone as a pain management tool ""not a treatment" and your observation that biologics are also"not cures" but pain management drugs without the side effects of prednisone.

Your post should be placed in a prominent place for all who suffer from PMR.

@hosers2

I understand the treatment you received on the other blog because I had the same experience. I only wanted to share my experience with Actemra. I had no idea why the self proclaimed “resident expert“ thought my personal experience with Actemra was controversial. I thought the goal was to find alternatives and to get off prednisone.

@sassysaveur, my symptoms progressed and when I began having scalp pain and headaches, as well as some elevation in my inflammatory markers, I started prednisone. I had a normal US of the arteries at that time. I don’t remember whether I received a GCA diagnosis, but it wasn’t something I was willing to mess around with. Are you seeing a rheumatologist? I’m glad to hear that you are getting appropriate treatment, but a specialist may be helpful for the diagnosis.
For now, my PMR is in remission and I’m working on getting my stamina and flexibility back. Fortunately, PMR does seem to burn itself out and let you get back to your own more normal life. Hang in there!