PMR

[KathleenJohnson107]

Hi , would just like some advice from this wonderful forum . Had PMR for 1yr not and got down to 10mg preds very easily . Since July I have had 2 flare ups. I have spoke to my rumi and he advised to increase my preps . I increased my preds first flare up 13mgs and after a few days I felt more comfortable . 3 weeks later a flare up again , really painful this time so in the last 2 weeks I increased my preds to 20mg with no relief at all . My rumi wants me to go on MTX or another steroid sparing drug which I am reluctant to do . Would it be wise before I see him again to up my dose again. Has anyone had flare ups and had to have increased there dose to more than 20mg to be pain free . Any advice would be really appreciated as I find this forum really helpful and I am thankful for all your replys . Would be interested to hear from anyone who has tried a steroid sparing drug with good results and minimal side effects . Thank you , Kath xx

[DorsetLady PMRGCAuk volunteer]

Hi,

If PMR then 20mg should have helped - that's considered the high end for a starting dose. Are you sure there is nothing else going on? You don't really want to keep increasing Pred without further investigation.

Can't help with MTX, but if you managed to decrease initially without too much problem it would appear that your body is getting the full benefit of Pred, so I would be inclined to put that on the back burner for the moment and try and work out what has caused the current situation.

Plus, unless it's really necessary do you want to add yet another drug into the mix - which for some people seems to have limited success anyway. I would also say, that despite what the doctors continue to think, at one year in your PMR is still quite active, so maybe the Rheumy is being a bit hasty in recommending MTX.

please keep us informed of progress.

[PMRpro Ambassador]

Ask your rheumy if he is suspecting it is not PMR but maybe LORA (late onset RA). Otherwise I would suspect you have tried to reduce too far and maybe have tried to add in new activities? 20mg should make a significant difference - but it isn't unknown for patients to have to go higher to get a flare under control. But you MUST reduce slowly and in small steps - or you run the risk of flares which are hard to manage.

[1Purplecrow]

Hi Kathleen... i took a quick read of your past posts and one thing struck me... it appears you started at 40 mg prednisone, a year ago....and are at 10 mg now.

dropping 30 mg in 12 months may have given you a false sense of the true process of tapering prednisone.

In my experience, it was easy to drop the first 10 mg in regular steps. Once I hit 10 milligram, things moved much more slowly. I have been on my PMR journey since Summer 2013, and am at 6 mg today. I make incremental drops, and hold my plateaus till i feel confident I am ready to take the next .5 mg drop. Sometimes, I havent been ready, and had to return to the earlier dose.

As you know after reading posts on this forum, PMR has its own schedule, and we can do very little to rush the taper of prednisone. If you are having pain, you probably are experiencing the PMR dragon letting you know its not ready to give loose of its current dose of prednisone.

I have found, I must listen to my body , and allow my taper to be excrutiatingly slow...i did manage to force the issue, and thought I was doing well at 3 mg. Within 2 weeks, my pain had returned with a vengence, and I was happy to go back up to 8 mg, then slowly drop again to my current level of 6.

The takeaway message here is simple...let your own body tell you when you are ready to drop a level of pred. My rheumy was ready to dose me with methaltrexate about 4-5 months into my journey. I had read enough on this and other forums, that I decided I did not want to take the drug, and refused. The doc didnt force the issue, and i remained on pred, period.

Kind regards, stay patient and positive, you are doing well. Jerri