Please can anyone offer some advice on what I should do if anything (sorry for long post) xI’ve had PMR since Oct 2018, tapering from 15mg down to 1mg in September. Pain started in my hands and feet, referred to rheumatologist- had bloods and ultrasound on hands and feet and told to increase steroids to 2.5mg for 3 weeks and back down to 1mg. Increase worked on feet, hands still sore and stiff. Got back down to 1.5mg this month and pain now in both inside elbow joints, really bad neck and upper back pain. Rheumatologist today said bloods are seronegative so pain must be fibromyalgia- I challenged this asking if he’s considered 20% of PMR patients have normal test results and why did increasing steroids work if it was fibromyalgia. He then offered me a steroid jab in my backside and elbows and amitriptyline for pain. I refused all as I don’t feel comfortable with his vague diagnosis. He did say I should go to the Caribbean to help the pain 😬 and increase Pred back to 2.5mg one day and 1mg on another? Does this sound right?
Advice please?: Please can anyone offer some advice... - PMRGCAuk
Advice please?
It sounds like you have more than just PMR going on. PMR doesn’t generally affect smaller joints like feet and hands. However the pain returning to your neck and upper back certainly could be a flare. (Steroids can help inflammation pain caused by ofher conditions as well.) I would guess that the suggestion to go up to 2.5 for a bit is to see it’s just a flare that can be mopped up quickly. I often do every other day doses while tapering but usually it’s just 1/2mg difference so not sure what to say about that other than give it a try and see what happens and then report back to the doctor. Hopefully others have more experience with a protocol like that.
Oh yes it does!!! Leeds did a study and found it can be part of PMR and it was very definitely part of my PMR.
That’s interesting to know. Everything I have read says that PMR tends to affect the larger joints and uses that to differentiate PMR from RA and other conditions. I will look for that study. I know PMR is relatively understudied and there is still much to learn about it.
I don't know if it was published - it was just before the Big C turned up!
PMR doesn't affect joints except as synovitis. There is no erosion and it is mainly the surrounding soft tissues that are inflamed. RA has a different pattern.
PMR is actually a disease of the muscles not the joints, mainly around the shoulders and hips although it does seem other areas can be affected.
jrheum.org/content/jrheum/4...
"PMR should be recognized for what it truly is — not
a syndrome of shoulder and pelvic girdle pain and stiffness,
but a chronic, inflammatory disease of musculotendinous
structures. "
Mine too! Reduced when I started Pred. It never felt like joint pain: more like my skin would burst as it was so stretched.
I agree. Every time I’ve had a flare it starts in my thumbs and goes from there. It’s always been my warning sign.
Same here - base of the thumbs, every time!!!!
Does it sound right? No it jolly well doesn't - and I would make a complaint about him! In the consultation is NOT the place for levity unless you are close friends with him! I'd accept my rheumy saying that - but I'd tell him to book the flights for me ...
They are also far too keen to switch horses and use that convenient getout of fibromyalgia. You have almost certainly overshot the dose of pred you need - it is only 3 years of PMR, well within the usual sort of duration of 4 to 5 years. You managed to get to a really low dose as your maintenance level - he should be pleased that well under 5mg works for you and should now leave you to work your way lower, 1/2mg per 6-8 weeks towards zero so you find the lowest dose that works for YOU and lets your adrenal glands wake up slowly too.
Would your GP step in here?
Thanks for your reply - my thoughts were to increase the dose to get pain under control for a couple of weeks then try tapering again. I was worried that I hang my hat on PMR because it’s what I know. I don’t know why my hands and elbows hurt and feet previously, my GP has retired but I think I will ask to see the new one as I’m not going back to the rheumatologist.
If the pred helps the pain it isn't fibro - it isn't inflammatory. Normal range blood markers are common in patients on pred, even if there is inflammation. There has to be enough present for long enough to stimulate an increase in the proteins that are being measured or having an effect. And pred suppresses some of the effect.
There are rheumatologists who refer to PMR cases whose inflammatory markers are within normal range as seronegative - especially when they are proven by PET/CT.
The only bit that sounds right is a holiday in the Caribbean. I assume the NHS will give it you on prescription?
On second thoughts about the Caribbean holiday, isn’t this the time for storms, hurricanes and tornados? Perhaps a holiday there is not such a good idea for PMR!
Very true Piglette😬
He first thought it was RA but blood results are normal and have been since I started taking Pred even though I know I’ve had inflammation present. He said my RF was borderline last time I saw him, not sure if that has any significance. There’s a lot going on and I appreciate it’s not easy to diagnose but it’s frustrating as I’m pretty sure it’s not fibromyalgia.
This is the reference:
pubmed.ncbi.nlm.nih.gov/308...
and miracle of miracles - the full text link is not behind a paywall!!!
jrheum.org/content/46/12/16...
More evidence of the link between PMR and myofascial pain syndrome ...
Good advice given already but I would definitely find a new doc! good luck.
Not that many most places because the PET-CT machines are very expensive so unlike CT machines they aren't in every hospital and cancer diagnosis takes priority in most places which is reasonable. Then that means a waiting time - and most patients object to waiting ...
It is WHERE the inflammation is that is significant.
The point is though that what you are diagnosed with depends on which structures are inflamed to cause the various symptoms. PMR involves extra-capsular structures, RA doesn't
Hi, I don’t know if what I say will be in anyway helpful to you, so just pick the bones out of it.My husband has had PMR for 12 yrs. He was diagnosed by a wonderful dr who has since retired. He was told by a rheumatologist 5 yrs ago to stay on minimum of 6mg forever or he will continue to have flare ups. This proved correct. He was been totally transformed by this advice and at 73 goes to the gym every morning. Our gp recently texted to say you need an overdue review to consider coming off completely. Why? If they work with no side affects in his case and his quality of life is 100% from being bedridden. Why suddenly suggest such a radical thing. We were up for a huge fight when he saw on his repeat prescription, “review done” continue. We didn’t know whether to laugh or cry.
Me on the other hand, I have what they fobbed me off with as fibromyalgia (which it isn’t). After a 3 yr wait I finally saw a rheumatologist who asked me not a single question but droned on at me. Said your bloods ok just very high ESR and I’m covered from head to foot in hives with no explanation. Sleep 16 hrs a day with fatigue…but definitely no steroids for this girl.
So the moral of this story is… get as many steroids as you can point a stick at… use them at your own sensible need and discretion and always have a back up in case of a GCA.
I think that we need to start taking the good advice of good physicians and ignoring the rubbish. Be proactive with our own health. I’m devastated that I cannot use the steroids as I’ve been given some by a friend and I was like Harry Potter in the kitchen right through Christmas. Now I know the dark cloud will descend once more and it’s back soon to cups of tea in bed.
Stay well all and Happy New Year 🥳
Hello Chittychatty 😊
I’m very pleased to hear of your husband’s situation 👍but not so pleased about yours! It sounds appalling that you seem to have been given a probably inaccurate diagnosis and you have not so far been able to overturn it…..I hate to think of you taking pred from a friend and then having to make do without 😟 Could you discuss this further with your GP, or if this yields nothing, could you get a second rheumatology opinion? Ask your GP to refer you, and if no joy there, is it possible for you to have even one appointment privately?
Good luck xx
Hi, yes I think I might scrape the money together and do a private appointment. Just wonder who to see as don’t want to waste the money. Maybe my GP can recommend. Best wishes.
If you ask stating area you are in and how far prepared to travel, you will get replies. But raise a new post, don't ask on here, not everyone reads all posts and replies, but will get notified of a new post.
Good idea. Thank you.x
Think you need to see another Rheumy (privately if necessary) and get a proper consultation/diagnosis.
….and tempting as it may be, please do not take steroids that have not been prescribed for you. Not sure what doses and for how long you took them (obviously not many days). They can give miraculous results (I know from experience) - but they are not sweeties!
You are not the only one to wait a long time for a diagnosis, and it can be very frustrating, painful and debilitating, but you just have to keep going back to the doctors and making a nuisance of yourself. Shouldn’t have to, but sometimes it’s the only way.
I agree with DL - was about to say exactly the same.
Course you were 😉
Thank you so much for replying. Yes I got panicky with family coming over Christmas and I knew I had to be on my A game. I rarely take any tablets but vitamins. You are correct it’s not good to dabble but I knew that a short sharp shock would be safe. Long term I would only do with medical advice and looks like that’s not going to happen. I’m going to contact my dr next week to discuss . They are still not seeing patients unless extremely serious.
Not good enough from GPs - and as we know undiagnosed PMR, if that’s what it is, can lead to serious issues. Perhaps if you can get through to surgery you could politely (or not so politely) remind them of that!
Back in the day I was pretty assertive but these days I think my confidence got a battering. You are correct, I need to get in there and state my case instead of being palmed off on the phone. Wish me luck. Happy New Year to you.
Think that happens to many….
I recall late hubby saying to me after a GP appointment (we always had a joint one), ‘I was wondering who was the GP and who the patient’ after I’d been particularly forceful….but I think that may have been the high doses of Pred….
Or maybe not! 🙄
Hi Chittychatty, thank you for taking the time to reply. I’m pleased your husband is in a good place and your GP supports him! So sorry to hear about your situation though and would really recommend persisting to get an accurate diagnosis so that you can have the right treatment, that’s my plan also. Happy new year x
Agree with advice to seek help elsewhere and please ask about the possibility you may have a form of vasculitis, especially if you are covered in hives.
I was diagnosed with M.E. & fibromyalgia (despite rashes) for decades before rheumatologist ran anti-C1q antibody test and discovered it was highly positive. Then diagnosed with urticarial vasculitis syndrome. Still battling to get effective treatment, but that's another story.
Good luck 🍀
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