I am a 49year old and for just under 3 years I have had PMR. Have been diagnosed and treated since Dec 2012. 3 Consultants have agreed the diagnosis of PMR. However the Rheumy I was seeing left at the start of the year, and I was transferred to the care of another new Consultant, this Rheumy has never examined me, just looked at my age on screen and decided I can't have Atypical PMR, he reluctantly treats it because his previous senior agreed the diagnosis. He keeps pushing me to reduce Pred, having started Azathioprine in Feb I am down to 4.5mgs. When I was at 6mgs i seen him as I started getting relentless cramp in right arm and vertigo, associated with reduction of Pred, he suggested we just stop Pred, I gave him a resounding NO. I should add for the last 18 months I have had GCA symptoms despite normal bloods and negative biopsy. The symptoms include jaw cramping, temple burning, tongue pain & spasms, head pains with tenderness to touch. All Consultants are reluctant to diagnose GCA under these circumstances.
My concern in the last 2 months have started having pain and stiffness in fingers and feet, GP says it is definitely rheumatoid, took bloods for Rheumatoid Factor and ANA, and told he to inform Rheumy. I picture him jumping through hoops and changing diagnosis to Rheumatoid Arthritis, however in view of the above I still feel I have PMR and possible R.A in addition. I would appreciate your thoughts before I see him. I am reluctant to stop Pred when I still have symptoms characteristic of GCA. Would it be worth asking for referral to a specialised Vasculitis clinic? Thanks, Runrig x
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Yes! Or at least a specialist multidisciplinary clinic who are prepared to take all your symptoms as a whole and not just look at blood results and age. Do you have any synovial swelling? I think that once you have 1 auto immune condition many others can roll up to join the party.
Waiting to hear if I am going to get my referral to Addenbrookes, hoping that no news is good news.
Keep on fighting, asking questions and demanding real answers Runrig.
Thanks Keyes, I have just sent an email to the secretary of the Vaculitis team at Addenbrookes asking if the would accept a referral. fingers crossed, then I just need someone to refer me, LOL. I don't seem to have synovial swelling, just pain and stiffness, although I do have what appears to be rheumatoid nodules at the base of my big toes. My PIP joints are a little swollen, I now have trouble removing wedding ring. Work has been difficult recently as I struggle wringing out flannels, or unscewing lids etc. I am sure my current Rheumy will try and amend my diagnosis to Rheumatoid Arthritis in view of these symptoms, as I'm in the right age category for that, :-?. Looking forward to catching up soon Runrig x
They replied to me very quickly. As you know I am a member of the VUK forum on here and also their Facebook group. Addenbrookes referrals have been a hot topic recently on Facebook. I know that some patients have managed to get a quick referral using choose and book and citing a second opinion. I think you are much more likely to get the referral from your GP but I realise the funding situation is more complex in England.
I know what you mean about work, I am really struggling too at the moment. A few hrs of hanging 5 litre bags on the filter yesterday rendered my left shoulder useless, my symptoms are much worse on my left hand side recently.
Fingers crossed that our catch up will only be good news stories!
Yes I think you can have both though with just PMR it would be difficult to persuade most docs it was the PMR and not the RA causing the stiffness. That's why Lodotra (delayed release pred) was developed: to improve morning stiffness in RA. You can certainly have both RA and a vasculitis and yes, I think a referral to a vasculitis clinic might be a good move. Given your problems so far I wonder how easy it will be to persuade your doctors to refer you - as far as I know the vasculitis people tend not to do private work. I remember it being asked.
Are you part of the vasculitis forum on here? They would be a good place to start for info.
Remember though, you can have GCA without it reaching and affecting the temporal arteryand your vision. The only way to identify that is with a PET/CT scan (I think that is which one it is). I'm surprised you haven't been sent for one already.
Thanks PMRPro, when my first Rheumatologist decided on a 2nd opinion, she mentioned that they may consider DMARDS or PETScan. They decided on the DMARDs and started Azathioprine. This new Rheumy I am under, is so dismissive of the symptoms that I don't think he would agree a PETScan considering the cost. I don't see him till the end of October, but plan to ask him then. I have sent an email to my Rheumatology nurse, regarding the fingers and feet pain, but she is on leave till Tuesday. My GP says to take Paracetamol and Diclofenac regularly for the pain, despite being on Prednisolone. Life is so much more bearable when I do take these.
I have sent an email to the Vasculitis clinic at Addenbrookes to see if they would consider seeing me, so fingers crossed. Then I have the hurdle of finding someone to refer me, LOL.
Push for PET scan if you can. I was diagnosed at 46 and had same problem with rheumy at the start. They eventually did the PET scan earlier this year and at last I got a final diagnosis of PMR and vaculitis. Not that it makes you feel any better it just stops all the arguing!!
Thanks m33ary, like you say it is the constant battling with medics trying to get them to listen. As soon as I say my temples are burning their shutters are down and they don't seem to hear the endless list of symptoms of GCA. I did see a Neurologist recently who was lovely and agreed this could be temple arteritis with nocturnal lingual ischaemia. I told him my Rheumy says "not in my lifetime", he suggested "watch and wait". When I said with every steroid reduction my gingers are crossed that it's not my sight, he said the dose of Azathioprine will prevent that. I hope he's right, because it could be a long time before this Rheumy comes round, will push for Petscan but think he will refuse :-? I rake it GPs can't request :-(Thanks again
If what you've got is responding to an anti-inflammatory then I would think it would be RA/any other autoimmune inflammatory condition rather than the PMR.
I was tried on every anti-inflam possible, including the dreaded Vioxx, before diagnosis and they did nothing but give me more muscle pain into the bargain. Not one had any effect on me except negatively and as far as I'm concerned, they do as much for PMR as DMARDS do. Zilch.
If you've found something which helps then stick to it and continue to until you are able to see someone with their head on the right way round. Like PMRpro I agree that a vasculitis team are the first choice.
Hi Polkadotcom, the NSAID Diclofenac that I have been prescribed only helps the pain in the fingers and feet, it does not help the muscle pains. The muscle pains, which I have had now for 3 years only respond to Prednisolone. It relieved symptoms in 4 hours and continues to help. I have had 3 specialists who have all undertaken tests before agreeing I have "Atypical PMR". I am convinced that the PMR diagnosis is correct, but concerned that with the new finger and feet problems, my new Rheumy will remove the PMR diagnosis, as he has been sceptical from the first time I seen him in February. I am interested to know if anyone else has both PMR and Rheumatoid Arthritis, or if anyone with just PMR has problems with the hands and feet. I am not sure my current Rheumy will agree to me attending a specialised Vasculitis clinic, GP possibly would. Thanks for your feedback. Runrig x
One of the most disabling things with my PMR was foot pain - when I had been sitting for a short time standing was excruciating and the pain lasted for some time when walking, it never fully went away. I couldn't walk barefoot and even ordinary shoes were impossible. I had to wear either Birkenstocks or mountain walking shoes (neither a chic alternative for a wedding!) My feet were swollen - the shoes I wore in PMR are now all too large. My hands were also painful, I couldn't pick things up, I struggled to hold a cup or turn a door handle.
I definitely have PMR - the response to 15mg pred was nothing short of a 6-hour miracle. The foot and hand pain took a few months to settle completely but was improved immediately. I am now pretty much pain-free on 4mg - despite a horrendous flare 2 years ago. But no-one here in Italy has questioned the PMR dx - and I have seen a consultant rheumy, several medical consultants, one of whom is a PMR/GCA buff, and my GP is a rheumy.
Don't bother asking the rheumy about cross-referral. Start with the GP.
Have been in touch with the vasculitis charity, who say what I describe is classic GCA symptoms. He advised a 2nd opinion from Southend or Cambridge. I'm apprehensive about Southend in view of my age as I seem to recall sever posts from patients of similar age to me who have gone that route and been told categorically No because of there age. Has anyone you know of tried the Addenbrooks route?
They are - we've been saying that since you joined any of the forums! You're in Kent aren't you? Where you go is up to you but the two places I would recommend are St Peter's Ashford or Leeds. Ashford is obviously preferable for you! But my experience with one of the guys there is of broad-mindedness: "I ignore the labs, it's the patient and the symptoms that count!" And he is such a nice person too (I think).
Hi there. Yes, I was diagnosed with RA (hands & feet) in May 2013. I'm on Methotrexate 15mgs weekly. In December 2013 I had a polymyalgia flare which responded within hours to 15mgs prednisolone. I'm now down to 5mgs with some muscle pain in upper arms but not all the time. The RA started suddenly for me with painful feet when walking followed by severe stiffness and pain in my fingers (especially the first joint down from the nail) which took a while to get moving in the mornings. Terrible fatigue also. I do hope you get sorted out soon. Angela.
Thanks Angela, I have PMR for 3 years and on steroids 21 months, down to 4.5mgs with help of Azathioprine. However it has had little effect on GCA type symptoms. My finger pain came on suddenly, in 2 fingers and within a few days has affected most of my finger joints, mainly knuckles and next joints down. Few days later crippling pain and stiffness in feet on waking which reduces after about an hour. Waiting on a Rheumy nurse replying to message. Having trouble wringing things out, opening jars, driving etc. it does improve as day goes on. I'm assuming when GP said its Rheumatoid she means Rheunatoid arthritis. Have been given a few vasculitis clinics for second opinion re GCA thanks to the wonderful people on here and the vasculitis charity. Concerned these hand and foot symptoms are occurring when I'm on top dose of Axathiopprind already :-? Thanks for your useful input, regards Runrig x
Hi, on a different matter I had to stand my ground with a consultant, I found that saying, " if anything goes wrong, I know how to complain did the trick". In your circumstances with possible GCA perhaps saying " if I suffer a life changing event because follow up has been delayed/denied then I will lodge a complaint" may give you the result you need?
I have GCA, NHS could not see me urgently so I went private, Rheumy got me back in the NHS for follow up, eye clinic the next day and biopsy within 2 weeks. Biopsy did not provide any evidence but I had been on steroids for 10 days by then but as I had head pain and, importantly, jaw pain on eating, she diagnosed GCA.
Yes, you can have both PMR & rheumatoid arthritis (what I and others call rheumatoid disease). You also can "transition" (or in other researchers' opinions, always have, and just fully manifest the erosive phase of) polymyalgic-onset RD. I'm not sure of the overlap between GCA and rheumatoid arthritis, but as a person with systemic PM-onset RD, I know that vasculitis underlies most rheumatoid disease.
I would add one blood test to your dx, which is ACPA, also known as anti-CCP. ANA is not specific enough, rheumatoid factor is better but has many false positives and negatives, too.
See my other posts here and on NRAS, including how I'm treating this with low dose naltrexone.
My RA factor was 14 which was where the reference range ended. Have pain and swelling in the index finger on right side. Now has jumped to the left, swollen every morning and in pain. Now my neck is hurting in so much pain.
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Runrig x
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