Is this a flare?: Had PMR for 4 years and been up... - PMRGCAuk

PMRGCAuk

11,817 members21,571 posts

Is this a flare?

York54
York54

Had PMR for 4 years and been up and down with pred , responding to return of symptoms . I have been on 5 mg of pred for almost 6 months and felt pretty good. This time not the usual, usually starts in neck , shoulders and hands. Now have deep ache in legs from hips down to my ankles. Not really had this before except at the very beginning when it was sharp pain in my legs, especially when rising from a chair or bed. I have had a bit of irritable bowel too for last couple of weeks, alternating diarrhoea and constipation. Paracetamol is hardly touching this deep ache so have upped my pred to 10mg for 2 days , today being the third day. Still feeling really achey. I also take 200 mg hydroxychloriquine. I’ve been here before , long time on 5 mg then bang , pain returns! I was going to try reducing quickly back to 5 mg , what do you think? Thanks for any response 👍👍

13 Replies
oldestnewest
PMRpro
PMRproAmbassador

You have spoken to the GP about this? It isn't typical and not even your usual - it isn't always "just" PMR!!!

York54
York54 in reply to PMRpro

I haven’t bothered the GP as I thought it was PMR again!

Agree you need to run that by your doctor. You're not on statins are you? People have mentioned them causing leg pains.

York54
York54 in reply to tangocharlie

I do take statins but have done for a long time so don’t think it would be that. Thanks for responses.

Blackcatlover
Blackcatlover in reply to York54

Listen to Tangocharlie. Don’t be so quick to say it’s not the statins. I took them for two years with little side effects. Started having terrible leg pains and bouts of diarrhea. Tried checking all my medications for side effects and sure enough statins could cause all the problems I was feeling. Stopped the statins and at the end of ten days legs were fine and all those trips to the bathroom stopped too. Please look into this before messing with your Prednisone. You’ve done so well.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to York54

Like BCL I took statins for years seemingly with little problem, cane off them after GCA went into remission and we reviewed all my medication.

GP started me again last year (3 years after stopping) on same brand, same dose - but I reacted to them - so stopped. Now on my records - as not to be prescribed!

Hidden
Hidden

For me, PMR was very distinct and something I'm not likely to forget. I had an additional autoimmune problem before PMR. At some point, relatively early in the course of my 12 years of PMR, I began to question whether I still had PMR. To be sure, I had all kinds of aches, pains and other problems just like you describe.

The problem that I had was that it became impossible to know what was causing what. Many medications, including atorvastatin, were introduced. Possible adrenal insufficiency and steroid withdrawal were suspected. All kinds of arthritis in my spine were discovered. Diffuse peripheral neuropathy was diagnosed. Cardiovascular problems, the list goes on and on.

In my opinion, taking more and more pred is not always the solution. Instead of mopping up inflammation, taking pred is more akin to sweeping problems under the rug. My advise is find a good doctor(s) to help you sort everything out. That is easier said than done but I was fortunate in that aspect of PMR. My doctors made sure that I had an ample supply of pred too.

Blackcatlover
Blackcatlover in reply to Hidden

DadCue, it was the Atorvastatin that caused a lot of my problems. A very high number of people taking them have muscle aches. It’s very easy to give them up a few days to see if you improve. If not-the search goes on. I hate to mess with my Prednisone. It’s my lifeline that makes living okay. I don’t want to go back to how I felt in the beginning.

PMRpro
PMRproAmbassador in reply to Blackcatlover

I took atorvastatin for 10 days, and at half dose. it took months to get back to where I had been before.

Blackcatlover
Blackcatlover in reply to PMRpro

I also was taking a half dose and it still messed me up big time.

Hidden
Hidden

Atorvastatin was stopped but now I have stopped prednisone too. My rheumatologist suspected statin-induced myopathy because of a lab value (elevated CK level). At first, that seemed to be true because the lab value started to trend down toward normal. Then the lab value went back up but not as high. I'm not sure what the thinking is now because my labs haven't been checked in awhile.

I do find it interesting that my cholesterol level on atorvastatin was lower than the normal range. Now the diffuse polyneuropathy seems to be improving. Statins can also cause polyneuropathy but that seems somewhat controversial. I'm just happy the polyneuropathy seems to be getting better. Just an example of not knowing what causes what.

I do know that the only reason I was started on atorvastatin was because of prednisone.

Thanks all, I’ll be in touch with GP, need to riNo before 8.30 else no chance☹️☹️

Could it be te "combination" of meds, tat you are taking ?

You may also like...