I have had pmr since Sept.2020. I know it's still with me,I recently tried to taper to 3.5 from 4 without success. I have been tapering using the slow ones on here so a lot slower than rheumy wanted. Hadn't seen them for quite a while. Out of the blue they gave me a telephone appt. The doctor was obviously surprised I was still on pred. I tried to tell him the pmr is still there but he wouldn't listen , said I need to come off. I have had bloods done,I suspect they're not going to be too bad so I'm waiting for the letter with the results and I suspect he will want me right off the pred. Why don't doctors listen we know our own bodies. He said the increasing pain last time I tapered was just due to the taper and it would settle but I think I've learnt the difference between that and when the dose has been lowered too much. So frustrating. Terribly sorry for the rant had to get it off my chest.
Rheumatology phone appt.: I have had pmr since... - PMRGCAuk
Rheumatology phone appt.
Have you any chance of speaking to your GP? Maybe they will be a bit more sensible.
Only since 2020 and he thinks you should be all better? He'd have a lot of problems with a patient like me then, low dose pred for about seven years... You're below 5 mg and any doctor should think that an excellent level, unlikely to cause side effects and yet still keeping the PMR symptoms at bay. And as a two + years veteran you surely do know your body and its need for pred best.
Yes I agree. They seem to have a tick box mentality one size fits all. It's ludicrous.
I’m thankful I have a rheumatologist who quickly got on board the slow taper idea when I shared it after flaring on my very first reduction.
At one point I stayed at 4mg for an entire year because my body was just not ready. I think we get a feel for these things as time passes.
I don’t understand docs who think it’s one size fits all, or one method of taper fits all in our case.
Glad you have a good rheumy. My gp referred me as she wasn't sure whether I had pmr or RA, the gps we had at the time wasn't that great with pmr treatment anyway. Haven't been able to win either way. 😩
Well I have had it for over 5 years and although I got to 4mg I flared and now on 6.75mg. I thank God my GP is understanding and has not sent me to a rheumatologist
How frustrating for you! Definitely try a GP route. 💐
He sounds very like the locum Rheumy I saw in July. All I can add is, do what you think is best for you and be prepared to argue your case. I'm even considering asking at my next appointment "How long did you have PMR for?" "What problems did you experience getting off Pred?".Sounds very confrontational I know but today I'm just starting to feel better after having Covid a month ago, increasing my dose following the sick day rules, being so poorly that I knew I wouldn't be able to jump back down to 3mg, so am settled at 4.5/4mg. The locum expects me to be at 2mg/1mg by now, following his very speedy taper which was guaranteed to induce either a flare or an adrenal crisis.
They always seem to be in such a rush to get you off pred no matter what. He originally wanted me to just taper 1mg every month. I would of been off ages ago and back to square one in no time.
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