Hi to everyone. Firstly, thanks to all who take the time to post and comment - this forum is so valuable to me as it helps me to deal with things and realise I am not alone with this. I think I need to start off by saying I was diagnosed just 3 years ago at 56 after a really slow onset of my illness. It took a long time to get to the point where I couldn't put my bra on, comb my hair or turnover in bed with that horrible pain My ESR was 99 when diagnosed and I've had a few flares. My last CRP test was about 4ish (Rheumy wasn't that anxious to share with me). When initially referred to Rheumy he ruled out a variety of other conditions including scoliosis. Had 2 biopsies for GCA - and approx year ago was diagnosed by another Rheumy on the team with fibromyalgia as well. I am currently on 6.5 to 6 of steriods on the slow taper programme advocated by PMR PRo. I also take 20 mg of leflunomide after kicking into touch 20 mg of methotrexate because of side effects. Also take Alendronic Acid ,Amitriptylene, Vit D and Loratitdine (Apologies this took so much time)
Anyway went to the Rheumy he asked how I was, I said "Good hours, bad days". "Oh well, what do you take for the pain, paracetemol and or iboprofen" he replied "Neither touch the pain" saysI "So I don't take them. I feel I don't need to me taking anything that doesn't work as I'm taking 6 types of medication already for my PMR/Fibro one way or another" He replied. "Well, you don't have PMR as you're too young and its lasted too long as PMR goes in 18 months, you have Osteoarthritis." Well, that stopped me in my tracks. I talked about current research saying people in their 50's and even younger were being diagnosed and that average length of PMR was about 3 years now but all I got was a " Phuh" and shrug dismissing all that I said.
I countered with "What about the classic aches and pains I still get eg difficulty with hips and the classic of the pain the shoulders and arms and the inability to get my arms to my hair as if there's a bar stopping my muscles from moving my arms up that far and pain in bottom and backs of legs". "Phuh" was all I got again. When pressed he said the pain was my shoulder joints and upper arm muscle pain was referred pain from the shoulder joints. I know that I do have bad osteoarthritis in my hands and my dexa scan showed poor bone density which has improved slightly with AA and everyone else getting a little worse in my tertile, but he has dismissed osteoarthritis before because of x-rays and exams he has given me. His parting comment really confused me, "Keep on with the slow steriod reduction plan and the leflunomide"
I have made an appt with my GP to discuss, but am unsure of what to do, as I'm confused. To me, my symptoms are no different to 3 years ago, and everything got incredibly better after a few days on the steroids. Has anyone had experience of this happening to them or does anyone have any advice of how to proceed? as I'm still bewildered by all of this especially continuing with the slow steroid reduction, if I don't have PMR.
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missretired
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Sometimes you just despair! It often feels as if they don't know anything at all doesn't it? I am on my 4th Rheumy in 3 years and hoping that this one will continue to make sense. It took 2 years for me to get a definitive diagnosis through a PET scan which was a relief!I was considered too young at 52. I have had terrible trouble getting below 11mgs in the 2.5 years I have been on Pred. and this has meant Rheumy's getting cross with me, giving me horror stories about the damage it is doing- as if I can make the PMR go away with positive (or negative) thinking!! I have been put on Methotrexate and Leflunomide, neither of which protected me from the numerous flares I have had. Just now I have been doing the very slow reduction from 11 to 10 and realising that my body is not liking it, so going up to 10.5 in the hopes that things might improve. I have had a diagnosis of OA in both my knees, but that pain is very different from the PMR pain. Rheumy thinks it is probably due to my thigh muscles being very weak from the PMR. I am trying to do strengthening exercises but that is aggravating the PMR aches in my muscles. Can't win.
My advice? Get a second opinion if you need a Rheumy, or just carry on as advised and don't doubt yourself. Sometimes the patient knows herself best.
Do you happen to live in Kent? Or Wales? Is this the same rheumy who you saw last year?
I would say go back to your GP and ask him to manage you - but you're on leflunomide aren't you so that won't work. You don't need a rheumy otherwise - and you definitely don't need a rheumy like that. I have come across a few who seem to be schizophrenic but that is appalling. Find out from your GP where else you can be managed - and you could refuse to see a particular doctor if you have to remain where you are. But this is something you need to clear up with your GP.
He obviously knows NOTHING about PMR or he doesn't want to demean himself with what he probably perceives to be a non-serious illness (come across that before I'm afraid) - because that is all twaddle he has spouted. The medical literature suggests that about a quarter get off pred in 2 years - but are at a higher risk of relapse (I can't think of a better reason for staying on pred for a bit longer!). Half are off pred in 4-6 years, the rest take longer (that was US and other English-speaking experts). The standard German rheumatology textbook has said an average of 5 years for a very long time - and some take much longer. Nowhere does anyone say anything about 18 months and anyway, it is wishful thinking. And the variety of PMR found in the UK isn't any different.
HOWEVER - I assume you are on annual checks? Or is it more often because of the leflunomide? Either way - take as a positive that he has told you to continue as you are and ignore him until the next time. Though I have to say I wouldn't want to see anyone like that again.
Part of the reason for the slow reduction below 8mg - especially after a few years on steroids - is that your body has to get used to making its own corticosteroid again. The slower you reduce the dose the fewer problems you will have. Anyway - your clinical history suggests that what you had was PMR - it should be a clinical diagnosis (on symptoms) combined with response to pred.
So basically - ignore him and hope he's moved on by next time
Hi, I sometimes wonder where the NHS get some of their rheumies from.. do they take a certain percentage through a machine which zaps their brains of all common sense and manners. The one I saw - once - certainly seem to be affected that way!
I've had PMR? (not according to the Rheumatologist) but certainly GCA for almost five years, plus OA in both shoulders and left knee, and as Suzy says the pain is different. If you have OA you can take Co-Codamol with steroids, that's about the only thing that takes the pain away when bad for me. Having said that, pain is manageable at present so I'm off them, just to give me system a rest! Ibuprofen is a no-no with steroids.
Hope you manage to get things sorted with your GP. If you've got a good one, sometimes they're a lot more helpful and understanding than the so-called experts.
Hello missretired, I'm sorry to hear that this visit has thrown everything in the air so to speak. All I can say is I was diagnosed with PMR December 2013 aged 52. Symtoms began in the September and by diagnosis I could hardly do anything and the pain was simply so unbelievable all I did was cry and cry.
A rheumatologist diagnosed me and ever since diagnosis I have received excellent care from both him and my GP. He is happy with me using the dead slow and almost stop method following a flare in December 2014 when I attempted to reduce from 9mgs to 8mgs.
On my last visit to him he mentioned that there is evidence that suggests the younger you are at diagnosis the more problems you experience throughout "recovery" if I can call it that, and therefore from diagnosis to remission takes longer.
Your rheumatologist sounds as if he is confused about many of your symptoms and therefore is simply dismissing some or bunching many of them together and now classifying them as something else. They need to remember most of us had never heard of PMR, don't want PMR and never diagnosed ourselves with PMR in the first place. And as in your case recovery is taking longer than expected, we are at fault!
No wonder you areupset because I would be too. As you say discuss all of this with your GP and see what they suggest. But your rheumatologist needs to understand that when patients present with multiple symptoms they may have multiple conditions and it doesn't mean that one of them cannot be PMR.
I had my first rheumy appointment 2 weeks ago and had the same experience. I had been relieved to finally have a diagnosis from my initial hospital visits and to have relief from pain when he delivered his expert opinion. At 61now I couldn't have had symptoms since I was 56. I broke down in tears when he told me that he didn't believe that I had GCA. By the time I got home I had little hope for the future
An hour later the phone rang and it was the rheumy. He hadn't been able to allocate my biopsy result or blood results in my casenotes while I was with him but he had since found them and they confirmed a diagnosis of GCA. We must put our trust in these professionals while we are at a very low point in our lives yet the true experts are us - the people going through this. Maybe the rheumatologist guidelines need to be reassessed.
Missretired, I completely and totally appreciate as to how you must be feeling!!!! I have had bad consultations with Rheumy drs over GCA over the past few years ( x2 adamantly refused to recognise despite the symptoms x1 nice but not getting anywhere in terms of the diagnosis). You are not alone...
I think it may be useful to have a list of rheumy drs and feedbacks from patients on these drs (under different areas)...? My first rheumy was RECOMMENDED BY PMRGCA group but he was utterly useless in diagnosing this condition. Even if one patient / several patients may give positive feedbacks, others (who are younger) may not have the same experience due to younger age.. This is not an easy condition to diagnose..just my personal take on this..thanks
LaurMay, you wil be pleased to hear that work is, in fact, starting on updating the BSR Guidelines for the Management of GCA, and that there will be patient input. Work on updating the guidelines for management of PMR has recently been completed and we await publication.
So glad the rheumy eventually managed to locate the biopsy results - shame he caused you such unnecessary grief in the meantime by making such a negative statement. Still at least you now have a very positive diagnosis to avoid any queries in the future. All good wishes for everything continuing smoothly from now on.
This might help the OA in your knees - it certainly helped mine and others who suffer with OA.
Flexiseq - a bio-mechancial gel developed by Arthrities Research, take a look at the ARC site and read up on it. Worth every penny I spent on the first tube and as it is bio-mechanical (works like WD40) there are no side effects.
I really wish that Flexiseq had helped my knee pain and neither co-codamol nor Solpadol helped either. The only relief I have had was from steroid injections and even then I can only walk for 10 mins at a time so far.
I've just posted a question about anyone got PMR in their 50s as I saw a rheumy who said it's impossible I've got PMR as I'm too young (51ish when it started, now 54) and it must be something else. He told me to get off Pred as they were useless and switch to painkillers too even though I tried them before the Preds and they didn't work and said the Pred worked miraculously. I said it's not so much pain I'm bothered about but that it's impossible to move with stiff hips and legs and the preds have helped. I'm shocked and confused too. Is it the same guy? I guess we can't mention Consultant's names but I'm in Leeds and went to Chapel Allerton Hosp. PS update - see other discussion 'Anyone got PMR in their 50s' as I've had lots of good advice.
Thank you so much, tangocharlie!!! It helped me so much. I will take a close look at the thread also, you are so kind Have a nice weekend & take care, lancrose
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