Has rhuemy got it right (don't think so)

[Stanley123]

Have reduced steroids from 20 to 0 in 6 weeks on rhuemys instructions. She doesn't think I have pmr says I'm too young I'm 53. All my pain has returned sore neck, shoulders, arms, hips, legs. She prescribed gabepentin to help not helped in the slightest. I'm feeling frustrated as still not managed to go back to work at this rate I'll never get back . Sorry for the moaning but feeling fed up. Seeing rhuemy again on 19th of this month.

[DorsetLady PMRGCAuk volunteer]

Hi Stanley123,

Think the Rheumy might just proved she herself wrong - maybe that was her intention. Sure she'll say it was.

If it is PMR, then as you've found out, nothing but Pred touches it. 53 is quite young to have PMR, but certainly not unheard of, ask people on here!

Hopefully at your next appointment you will get a definitive answer, and a sensible way forward.

Good luck. Please let us know outcome.

[Stanley123 in reply to DorsetLady]

Thankyou DL for reply hopefully will find out one way or the other what is actually wrong with me & then I can try & get back to normal whatever that is 😂

[DorsetLady PMRGCAuk volunteer in reply to Stanley123]

As you can see from various posts, we don't do normal!

[HighlandCat]

Hi,

I had just had my 50th Birthday when I was diagnosed luckily my GP was looking at my symptoms and how quickly the pred worked not my age.

Fingers crossed you can get this sorted soon.

Cat

[TooSore]

PMR started at 51.

[PMRpro Ambassador]

Well she is totally wrong in saying you can't have PMR at 53! Even the international guidelines say "over 50". and that doesn't mean that under 50s don't get it. It is less common but many of the younger people are fobbed off with "fibromyalgia", "depression", "your age" and a load of other guff.

I was 51 when it started but I had normal blood tests which added to the confusion. Did you have raised ESR and CRP (the blood markers)? That is a significant point - because gabapentin is often used in fibromyalgia. However - pred does not work in fibro because fibro is not inflammatory - so the ESR and CRP will not be raised.

[Stanley123 in reply to PMRpro]

Thanks for the replies I did have raised esr & crp which didn't really go down much even when I started preds that's why my Gp referred me to rhuemy. The rhuemy said the levels where pretty much normal for someone my age who takes metformin not sure what that means. 🤔

[DorsetLady PMRGCAuk volunteer in reply to Stanley123]

My guess is - neither does she. My late hubby took Metformin for a long time - no raised markers!

[PMRpro Ambassador in reply to DorsetLady]

I think this lot agree with you DL:

ncbi.nlm.nih.gov/pmc/articl...

"Metformin positively affected the oxidant/antioxidant balance in newly-diagnosed Type 2 DM patients with no significant effects on acute phase reaction protein. "

Acute phase reaction proteins - = CRP.

I think I'd be looking for another rheumy ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Cir blimey, you don't mean I got something right! Made my day!

[PMRpro Ambassador in reply to DorsetLady]

You get an awful lot right - don't diss yourself!!!

[sondya in reply to DorsetLady]

Ha ha. Well there you go then, DL. I've always set great store by your advice.

[Stanley123 in reply to PMRpro]

I think I might have to find a new one this one doesn't seem to know what she's talking about...wish she was as knowledgeable as you & DL are re: pmr 😊

[navejasjoe in reply to Stanley123]

My wife has been taking metformin and that by itself did not raise her esr and crp levels. When those levels were raised, she was diagnosed with PMR (age 64), and the prednisone lowered the levels and decreased the symptoms. She kept taking metformin and the levels of esr and crp were not raised.

Joe

[roniandfred]

I had pmr in my late 40's. On steroids for approx 10 years. I am now 71 and have osteoarthritis and ??? , waiting to see rhuematologist in June . 4 months wait for appointment. Never have been back to normal ! Since pmr.

Now I can not walk without holding on, and need a wheel chair for shopping.. Doc has just said take ibuprofen and paracetamol. Think I am immune from them have taken that many. ( they do not help).

I have pain every where.

[DorsetLady PMRGCAuk volunteer]

Hi,

If you're not on Pred now, are you sure whether the pains are arthritis or PMR, if they're PMR, then as you know the paracetamol and ibruprofen won't help at all. Plus you say you have pains all over, that sounds more like PMR than OA to me.

I have OA and take a combination of paracetamol and co-codamol, only one of each twice a day, and they do help a little. Not brilliant, but don't like co-codamol on their own - too strong! (No Pred - stopped last year).

Whilst you're waiting to see Rheumy perhaps you should discuss possibility of PMR returning with GP and maybe try small dose of Pred to see what happens.

[roniandfred in reply to DorsetLady]

Had physio, mri, X-rays, blood tests, which have shown auto immune antibodies ?.

Have got type 2 diabetes , and high blood pressure .

Can not take naproxen, or cocodamol.

[DorsetLady PMRGCAuk volunteer in reply to roniandfred]

Hi again,

If your bloods have come back showing problems, wonder why GP hasn't considered return of PMR. Perhaps he thinks once you've had it, that's it!

If you can remember back to your previous PMR can you say the symptoms are similar? Appreciate is was a long time ago, but I don't think you really ever forget them. If they are, then I'd be suggesting (!!) to GP he thinks about that.

Sorry you're not getting any relief from pain, I do know how debilitating and depressing that can be. Hope you get some answers soon!

[PMRpro Ambassador in reply to roniandfred]

Which a/i antibodies?

[bigg8]

HiS

Stanley123 I was also told I was of a young age at 57 to be having polymyalgea I was put on 15mg

Of pred and to have it reduces to 12mg after 4 weeks then to reduce 1mg every 4 weeks after that have found some improvem

[Bonnig]

I'm 53 and I have PMR.

The docs said no in the beginning too but I kept pushing them for steroids.. it's the only thing that works for me.

[S4ndy]

I was first diagnosed with pmr at 46! Didn't have pred at that point. I refused and took loads of other painkillers nine of which really worked. Seemed to go into remission after about 2 years. Came back with a vengeance when I was 54 and currently on 12mg a day of Pred. I started in 30mg a year ago and my pmr pain was 70% better after 2 days. Too young eh! Hmmmmm....