First Rheumy Appt

Home from 1st rheumy appointment.. and lo and behold his professional opinion is I do not have PMR or GCA.. He was very adamant that I am to young and have been misdiagnosed. I will give him credit where due, he was very thorough.

He wants me off the steroids within 3 weeks as they are causing me other issues. He said he believes I have Fibromyalgia and wants it controlled with pain killers and sleep aids.

I spent the 1st 20mins just crying haha.. I think its all been building up over the months.. I am a single Mum with no living family.. My teenage Daughter is the only one at home and I try to hide it all from her.. So think I reached my breaking point today and just sobbed.. I guess all I can do is have faith in what he is telling me and follow his advice.. Whatever the outcome my fundraising for PMRGCAuk will not stop..

15 Replies

  • I'm sorry you are so upset - I've just looked at your older posts but I can't find anywhere where you say how old you are. There is no denying that the majority of cases of GCA are in over 50s - but there are documented proven cases of much younger patients: a few in their teens and one in his mid-30s. It isn't common, but it happens. There is little you can do at the moment - but if the symptoms return as you reduce the pred dose and there is anything that suggests a threat to your vision you should return to your GP and insist on an emergency referral to (preferably) someone else. However, if you get any visual symptoms one thing you can do for yourself immediately is to go to an optician, explain the situation and ask them to examine the back of your eye to see if the optic nerve has been affected. If there is any sign of trouble there they can send you to an eye specialist or a neurologist, both of whom also care for GCA patients.

    The dose of pred you were on should have dealt with any PMR symptoms very quickly - if it didn't that may be why he is so adamant it isn't GCA/PMR. There is a fair amount of cross-over between PMR and fibromyalgia, when I was first ill and looking for what it might be it really was a toss up between the two except I didn't have the full count of pain points and every muscle hurt to touch. The response I had to 15mg of pred was the clue - almost pain-free after 6 hours, and that doesn't happen in fibro.

  • I am 48.. Within 2 days of taking Pred I was pain free almost.. All I can do is be guided by what he advises.. Listen to my body and take the plunge. Thank you for your words of support and advice.

  • If it all comes back and your GP will play the game you could ask to be referred to Southend since I seem to remember you are not too far from London. On past experience, they may also say you are too young but they are likely to try a form of CT scan imaging to find out what IS the trouble. The last 48-year-old I know of who saw them with that response was finally told "Um, yes, it is PMR, we've found inflammation in the right places...". Of course, this guy you saw might also come round to that approach if the pain comes back and doesn't respond to painkillers - cos PMR doesn't, I'm not convinced fibro does but I stand to be corrected.

  • You are right as far as I'm concerned, PMRpro. Fibro doesn't respond to painkillers - at least none I've tried so far - the only thing which seems to have any effect on mine is amitriptyline. I do take a low dose of Gabapentin, but am intending to come off it as I don't believe it is doing any good and on higher doses I get side effects now. It is easier to deal with if the weather is on the warmer side, but too hot and it goes berserk!.

  • I also have been told I have fibro, I take amitriptyline 30 mg about 19.00 hrs, it does seem to help, especially with my neck pain. It does seem to make you tired the day after, but it gradually wears off x

  • Im just so confused by all this to'ing and fro'ing.. Will do as rheumy says and hope he is right.

  • Hi Jcqln1505,

    I truly hope the Rheumy is right but my understanding is fibromyalgia doesn't respond to prednisolone. I think that fibro is too handy a diagnosis when Rheumy's are stumped and can't explain what is happening.

    I was 47 when I had bilateral hip and shoulder pain, anemia, weight loss, low Vit D and B12 and fatigue. 10 months later I awoke one morning with the worst headache ever, blurry vision and later that day developed jaw claudication.

    Nearly a year later after high dose steroids, multiple medical opinions, blood tests, scans, temporal artery biopsy etc I am improved enough to be back at work, have reduced my steroids to 8 mg and have just started mycophenolate which I am hoping will be my wonder drug! ( tried methotrexate which helped but wore off after 4 days ).

    I still don't have a definitive diagnosis, my inflamatory markers are moderately raised, my lupus bloods are equivocal and C3 complement is low. I have been lucky and have received treatment for my symptoms. I went to Southend for a second opinion ( privately ) and was told categorically that it wasn't PMR/GCA as I was too young, the differential diagnosis offered was ankalosing spondylitis which proved negative on MRI scan.

    Auto immune diseases are complex with many cross overs and overlaps. PMR pro offers really good advice if you become symptomatic whilst reducing the steroids. Keep pushing for the right diagnosis and don't be afraid to ask for a second opinion if needed. No one will care about your health as much as you do and we all have to be our own advocates.

    Good luck.


  • Thank you.. I went in all distressed and in tears.. left feeling confused but a little hopeful.. Having chatted on here and a facebook closed page am now even more confused haha.. The general feedback off everyone is the fact that I responded to pred so quckly is a classic sign it is PMR.. My worry is the headaches I get all the time (24/7) sometimes searing pain through my head.. Rheumy said that was the pred causing that.. Thank you all so much for your help, support and advice. I will listen to my body and be sure to go straight to GP if needed..

  • Hi there. I had excruciating headaches on prednisolone 15mgs for PMR and developed migraines with aura which were very frightening. My GP suspected GCA and increase to 60mgs (it was Xmas and my Rheumy couldn't be contacted). The headaches were terrible and lasted day and night. I didn't have GCA thankfully but the headaches only went when I got down to 10 mgs. Pred does give you headaches, no matter what the doctors might say. Good luck with your treatments. Angela x

  • "I went to Southend for a second opinion ( privately ) and was told categorically that it wasn't PMR/GCA as I was too young, the differential diagnosis offered was ankalosing spondylitis which proved negative on MRI scan." I had a rheumy like that. PMR wasn't a glamorous enough diagnosis and below him I got the impression, he wanted it to be ankalosing spondylitis too!

    However, whilst Dasgupta and co are perceived to be the be-all-and-end-all of PMR/GCA, I would appreciate his response to the autopsy report for a 37 year old in south Wales which decided he died of a stroke due to undiagnosed GCA. Because whilst physicians know everything and do nothing, surgeons know nothing and do everything - the pathologist knows it all and does it all but it's too late. GCA was proven in a 37 year old. There are also reports of a couple of teenagers with proven GCA. It's not common - but it happens and to say categorically "it can't be - you're too young" indicates a serious misunderstanding of statistics.

  • Its scary to know that misdiagnosis can be fatal. I understand a GP getting it wrong sometimes as they are just what they are 'General'.. but when you are ill you should have someone you can rely on to get it right :(

  • Hi Jcqln1505,

    Mmm, pred side effects are too handy an excuse. My ongoing blurry vision was blamed on high dose pred, reducing the pred has made no difference, the only thing that has helped recently has been when the methotrexate was working.

    I have done loads of reading in the past year. Lupus and some forms of vasculitis can present with polymyalgic symptoms, also the headaches, facial pain etc. My tentative diagnosis is some form of connective tissue disease, my Rheumy struggles to explain my headaches, facial pain and blurry vision in relation to this. I find this distressing but he is actively treating me so feel I can't complain too much. I found a referral to a multi disciplinary vasculitis clinic helpful, it was them who suggested mycophenolate. My rheumy was willing for me to try it despite having limited experience of it, I am not sure he would have thought of it himself.

    If I can help in any way or you have questions about my journey please PM me.

    Best wishes


  • Thank you.. I have started a closed group on Facebook. Its only small at the moment and those that are on there are very newly diagnosed and confused too.. I must point them to this group.. or point you guys to the page on Facebook.. You are all so caring, supportive and helpful.. something sadly my friends (as wonderful as they are) just can not do..

  • I am working with a group who are about to study the pred side-effects side of things - and have pointed out to them that it is all too easy to blame pred for all sorts of things and miss the real problem. I am unusual in having had PMR for 5 years without being on any form of treatment except the odd ibuprofen when it all got a bit too much but which didn't do anything more than take the edge off the pain and then 5 years of PMR with various forms of pred - and pred is not always pred (if you see what I mean): one form no probs really except weight re-distribution, one form horrendous side effects and it didn't work for the PMR either and a third form where all the side effects have gone and I've lost 15kg in weight and the PMR is well controlled at 5mg. No prizes for guessing which I like - but it isn't yet available for PMR in the UK despite being used in much of the German-speaking parts of Europe. I have, however, gained a LOT of experience of PMR, pred and reducing pred in that time ;-)

  • Good luck with all the excellent advice you are getting from this forum - just another suggestion if you are still getting searing pain - it might be worth getting a referral to a neurologist. I was wrongly diagnosed with GCA and put on steroids - which helped with the headaches but later it was decided that I did not have GCA and was referred to a neurologist who diagnosed chronic migraine! |Please though do not neglect pains in your head - better to make a fuss and get to to A & E than lose your sight!

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