PMR or is this fibromyalgia?

[sealine30]

Sorry for the long post!

I was discharged from my rhumy on a reducing pred and controlled symptoms last year. Yay! Everyone applauds 😀

However I asked my GP to re-refer at the beginning of this year as things seemed to be going wrong again. Not the stiffness but joint pain in various joints at various times but always in both left and right. Had tried upping the pred to 5mg to no effect.

Saw a different rhumy who suggested some scans on shoulders and elbows and to take pain meds (been doing this for some time) blood tests came back with no raised levels and scans showed no inflammation, but bursitis in shoulders and golf elbow?

Anyhow, made the decision that if upping the pred didnt work I would stop altogether and did a rather fast reduction half mg per week and a final week of half mg every other day. Symptoms didnt get much worse so full stop on the pred.

Saw rhumy again last week and happy that i had stopped. Still no stiffness but pain in joints and muscles inbetween was soo bad. More blood tests (no results yet), amytritaline to help me sleep and an offer to inject the shoulder joints and some physio and since the raise to 5mg didnt help it cant be PMR anymore and possibly now have fibromyalgia.

3 days after this I was struggling to climb stairs, knees very stiff after any period of rest.

Saw my gp who suggested a steriod depot but would write to rhumy (I only wanted a sicknote actually) and given more cocodamols.

Couldnt stand it anymore so got out my stock of pred and decided to try a 5 day blast at 15mg and hey-presto after 2 days my knees work again! So thats defo not fibro but could it be something else and not PMR either?

[podo]

Why not PMR? If 15mg works and you can reduce back to your lower level then that seems fine. I've got "Very refractory" PMR, treated for nearly 16 years, last flare was in October 2017 when I had leg & Hip pain (both sides), a 2 day blast of 15mg sorted it and I reverted straight away to my previous 4mg dose. Now at 3mg, slow taper from 4 lasting nearly a year. All fine so far!

If it reacts like PMR why look for something else?

[PMRpro Ambassador]

It definitely isn't fibro if it responds to pred - and to be honest, although there are things that would respond to pred, from the history I'd say PMR is the most likely thing.

Why choose 5mg as "the dose that must work" - that is probably in the low side for most people.

[HeronNS]

As 15 mg is the dose usually recommended to sort PMR out from the other possibilities, it sure looks like it's PMR.

[Hidden]

Thank goodness for prednisone! My rheumatologist wants me at 7.5 mgs and I crashed at 10 now ay 12.5 for a settling time. Pain is subsiding nicely so get so confused as to why the bums rush to taper.

Funny thing is that your body will tell you what you need.

Good luck and hope it all goes well.

Linda

[sealine30]

Still off the steroid tablets but rhumy agreed to injecting my shoulders at last visit (evidence of bursitis on scans)which they did yesterday (shoulders weren't too bad Pain wise) . Elbows and surrounding muscles were debilitatingly painful!). Shoulder and elbow pain has now magically disappeared! So defo not fibro in my arms as suggested by rhumy at my last visit.