What's going on?

[Monkey321]

Hi, just a recap...was diagnosed with PMR early this year by GP, (am 48 yrs) started on 30 mg prednisone then tapered down, increased pain so back to 30 mg again. Also had numerous bloods, ultrasounds, x rays, ct scan which showed bursitis in both hips and shoulders. GP referred to rheumatologist. He diagnosed me with fibromyalgia as he believes too young for PMR. He confirmed bursitis, gave me 2 shoulder cortisone shots which did help. Both GP and rheumatologist (and me) all wanted me off predisone as it doesn't work with fibromyalgia. Started tapering and off all prednisone now for a month. However, body pains, aches, very painful lower legs started up again and has if anything steadily worsened since stopping prednisone.I'm due for bloods 30th October and haven't contacted GP as he'll likely tell me to take 'celebrex' (anti immflammatory) but i don't want to as can have bad side effects. Paracetamol/aspro help briefly but pain and affect on my daily life is getting ridiculous. (Busy homeschooling mum). Sitting down and getting up is a major mission. Have been going to physio (referred by rheumatologist) and her exercises aren't doing a thing except are massively painful. Any advice please?

[PMRpro Ambassador]

Find a doctor who doesn't have blinkers! This age thing is absolutely ridiculous!

You started at 30mg, how quickly did you taper? At what dose did the symptoms return? Did returning to 30mg help?

Does the pred deal with the symptoms? If it does - then you don't have fibromyalgia, you probably have PMR. They confirmed bursitis - typical of PMR, not fibro, Physio often makes PMR worse.

But you have to be really objective: do antiinflammatories, especially pred, help? If so, the chances are it isn't fibro, however much anybody wants it to be,

[Monkey321 in reply to PMRpro]

Thank you, I thought the prednisone wasn't helping as still had pain/aches while on it. The 2 cortisone shots definitely took 80% of shoulder pain away within 3 hours. Initially I got down to 19 mg (reduced 1 mg fortnightly) but pain increased so went up to 30 mg for 2 weeks then started tapering 1 mg fortnightly again. I felt ok as in manageable and so GP suggested tapering down quicker so reducing 1 mg weekly at first which was ok. After rheumatologist said it wasn't PMR but mechanical issues (bursitis and fibromyalgia he said to continuing taper at 1 mg every 3 days. (Which I was happy to do as thought if fibromyalgia then it was pointless anyway). From about 7 mg I started to increase in pain but as paracetamol helps I thought it wasn't PMR. Once I got to zero prednisone I had no adrenal issues, but slowly since then (stopped pred 13th Sept) pains have increased and am pretty much sore, stiff, all day. I walk once a day with my dog but even that now is a challenge. I'm had it after that. The physio exercises are sore to do but physio warned me they would be do I'm still doing them. I'm still awaiting HLA-B27 test which I got done on July 26th so no idea why they're taking so long. I'm not sure if it's just bursitis pain or something else.

[PMRpro Ambassador in reply to Monkey321]

I'll accept it might not be PMR - inasmuch as it needs proper investigation and that is being done. If it were me, I would want a PET-CT scan now you are off pred

Strange, my physio says to moderate if an exercise hurts. I wish they could understand the way pain is so dissuading (can't think of a better word) when you are left to get on with it on your own,

[Monkey321 in reply to PMRpro]

Thanks again. Problem here is CT scans are very expensive as in $1300 privately and you need a GP referral and my GP isn't keen at all. There's no chance of me changing GP as practices here are full and not even taking on new patients. I see physio on wed 18th so will talk to her then. If this pain is indeed fibromyalgia then it's a nightmare. I feel very sorry reading the posts on here as I empathize so much.

[PMRpro Ambassador in reply to Monkey321]

But it is something the rheumy should be doing as part of the diagnostics. Not a CT, a PET-CT - which are even more expensive. Medical care worldwide seems to have gone to the dogs ... I'm staying here for now!

[Monkey321 in reply to PMRpro]

Never had the PET-CT, no way my GP would refer me. I had to really push to even get a referral for ultrasound and x rays. The rheumatologist has discharged me and handed me back to GP who I've not heard from again.

[PMRpro Ambassador in reply to Monkey321]

All very unsatisfactory. But so difficult for us to help when you are up against brick walls.

[Monkey321 in reply to PMRpro]

Thanks anyway, just having a rant helps.

[PMRpro Ambassador in reply to Monkey321]

If you can't rant here, where can you?

[piglette]

Did the steroids help the pain? 30mg is quite a high dose so you should have had a fairly magical result. If they did not work and painkillers do work it does point to it not being PMR and could be fibromyalgia.

[Monkey321 in reply to piglette]

Thanks, I'm not sure honestly, I certainly wasn't "pain free" and suffered from prednisone effects eg, hot, massively grumpy, felt very agitated and out of sorts, got facial hair, weight gain etc. I could certainly cope more and do things more eg vacuuming. Because I have bursitis too, I'm extra sore so not sure if pain is that.

[piglette in reply to Monkey321]

Go on at your doctor to try and help you.