In reading this thread of reports, it dawned on me that it might be good to restate some of the “rules” for dealing with PMR. I put that in quotation marks BECAUSE RULE NO.1 IS THAT THERE ARE NO RULES THAT APPLY TO ALL PMR CASES. Everyone is different, but there are similarities that I have learned in my 2 years of dealing with, and researching PMR. I am not a doctor, but will share what I have learned from this forum and another larger forum in the UK.
RULE 2. Blood tests don’t always correlate with clinical symptoms. I have never had any abnormal blood tests, certainly not a hint of inflammation. That’s not unusual. Sometimes PMR will produce markers (sedimentation rate or other indication of inflammation), but up to 20% of patients never have any. A PMR diagnosis cannot be made on the basis of blood tests alone. Period.
RULE 3. PRM pain is most often in the shoulders and hips, but can appear in many other places. The key is that it is almost always bilateral, that is on both sides of your body at the same time. An injury or arthritis usually will be on one side or the other.
RULE 4. The best indication of PMR is an almost immediate relief from Prednisone (can be within an hour or up to a couple of days). Prednisone alone will not affect or cure arthritic pain or an injured muscle.
RULE 5. The disease sets the rules of tapering. Every case is different, especially in response to medication. You cannot “preset” a tapering schedule from a book. I began on 40 mg of Prednisone, a friend on 50. The Europeans do not recommend anything over 30 unless you have GCA. The point is to knock out the pain and then taper SLOWLY until it returns. I went a year in gradual taper until I hit a relapse at 3 mg. Bumped back up to 10, now am back to 2 mg and am doing well. I am lucky. Many of us never get off Pred, and many require years. It does appear that the ones with the most success taper very slowly and deal with the effects of Pred rather that the pain of PMR. Dropping by half a mg once you are inside ten mg per day should be considered. Precipitous drops from, say 10 to 5, often do not work. Again the goal is to take the lowest dose that controls the disease.
RULE 6. PMR is not well known to many doctors. It’s not rare, but unless you’re in the hands of a good rheumatologist your doctor may be unfamiliar with all of the variables involved with PMR. (The Mayo website is a good place for them to start).
I hope this is helpful to readers. I can supply a link to a website dealing with “slow tapering” if anyone wants it. See healthunlocked.com/Pmrgcauk or steroidtaper.azurewebsites or steroidtaper.com.