Advice on what to do next

[Katrinaroper]

After advice here...i was in pain for two years before finally getting a diagnosis..i knew I had some kind of "myalgia " but my Dr kept saying no.." take another antidepressant..have a scan."etc....

Spent £50 A week on a chyropractior....for a year.

Saw a physio who wrote to my Dr saying she thought I had pmr..she ignored this letter.

Became so disabled and in pain I couldn't sleep or dress myself.

Woke up one morning in so much pain ended up in hospital..within 5 hours was on preds...1 day later pain free and all movement back in 3 days.

Was on 15mg ..esr 40..

Being pushed to reduce as I am a diabetic.

After 4 months am down to 4.5mg...but feeling pain in my ribs and shoulders.. (not too bad..bearable)my esr has been stuck at 25 for 2 months... yet my gp still pushes me too reduce faster.. and said if my esr doesn't come down more it might not be pmr!!!!!!!.

She said she might send me to a rheumatologist....and it may be fibromyalgia.. (so why did pred work????)

I want to go up to 6mg just for 2 days then back to 4.5mg to see if it goes away...is this a good idea??

Am scared to have this prednisilone lifeline pulled out from under me...the pain was so bad.

Advice please....

[SnazzyD]

If this is the same doctor throughout, I’d seek a different one. Closed mind and uninformed is a rotten combination. It’s not as if you are taking mega doses either. Has there been evidence of your diabetes being adversely affected? What about insisting on being referred to a Rheumy? I’m sure you’ll get more replies to this from people who actually have PMR; I’m just GCA. Good luck.

[Katrinaroper in reply to SnazzyD]

Yes...my diabetes has been made worse by pred

[SnazzyD in reply to Katrinaroper]

Has that been linked to weight gain on Pred (the bain of our lives) or has it just sent it screwy on its own?

[Katrinaroper in reply to SnazzyD]

From day 1...no weight gain

[CT-5012]

The dose you are on is less than your body would make normally. I would go back to the last dose of pred at which I was comfortable while I found a new GP. The “aunties” will no doubt be here soon with their more experienced advice. Every sympathy, all good wishes.

[PMRpro Ambassador]

You haven't not got PMR - you have been forced to reduce the dose too far and it is no longer enough to manage the inflammation that is created every day as long as the underlying autoimmune disorder is continuing. Which on average it does for up to 6 years, sometimes longer. Of course your ESR is rising if she is making you reduce even further.

What dose were you last good at? Try it for a few days, possibly even a bit higher, add 5mg to where the flare started. If the pain goes away, it ISN'T fibromyalgia, it does not create raised acute phase markers (ESR and CRP) and doesn't respond to pred as it isn't an inflammatory condition.

And as Snazzy has already said: find a doctor who treats her patient and listens. You have a pretty rotten one there and she is lazy.

Of course your diabetes has been made worse, pred changes the way your body processes carbs. You need to cut the carbs drastically, that is often enough, and if not you need your medication adjusted.

And if you have PMR and diabetes - you are too complex for the average GP, you need specialist joined up care. Or a better than average GP - not the under average one you have now.

[Katrinaroper]

Thank you...i was thinking that

[SheffieldJane]

I really would seek to change my doctor. It seems that you know where this one is going wrong. You clearly need to return to the Pred dose that you were last comfortable at and reduce very gradually once this flare settles. Fibromyalgia is a much overused and often lazy diagnosis. See the Rheumatologist and let’s hope it’s a good one. I think your treatment has been appalling so far.

[GOOD_GRIEF]

Find another doctor.

Anyone who used antidepressants to treat pain is lazy, if not incompetent.

[paulst955]

New Doctor required.