Pondering the fact that PMR is one of the many auto immune conditions out there does anybody ever get referred to an immunologist or do they not really exist in patient areas, more research?
As is often discussed here what has triggered our PMR? Once diagnosed we are swamped by medications but never any real discussion as to what has triggered it in us and what can we do to address that. Could an immunologist help or is it a bit like looking for a needle in a Haystack? I wonder if there has been a viral overload perhaps they could help.
Any suggestions or ideas? Thanks
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Lochy
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We collaborated with PMR sufferer Elliott Greene from USA, in devising an international online survey for suffers of PMR and GCA.
Elliott is an ex immunologist and co-owns a software company specialising in online surveys.
The survey is totally anonymous and the information accrued can be viewed free of charge to anybody. We hope this survey will aid future research projects.
Please take approximately 10 mins to complete the survey.
Thanks jinsac. I have seen that study before and completed it myself. It will be interesting to see how it develops and what they are able to take from it.
They do do patient-related stuff and I have seen one but not for PMR, for a strange allergy to something in heavy red wines ... That was classed a tiny needle in 24 haystacks!
There are no cures for most autoimmune disorders (a/i) and you are seen by the specialism that is most likely to be able to manage the symptoms best. So thyroid stuff goes to endocrinology, arthritis/rheumatism to rheumatologists, lupus will go to rheumies unless it is the skin form in which case they go to dermies.
There is probably no single trigger for a/i illness - it is most likely a series of very variable things that affect the immune system - environmental, chemical, trauma, infection and stresses (emotional, mental, physical) and a genetic predisposition that makes it more likely the immune system will malfunction in response to a final straw that breaks its back. It isn't a hereditary disorder as such although often you see it in different generations of the same family - similar backgrounds maybe? It is next to impossible to say "this" is what did it - but one certain fact is that stress of any sort will make it worse and may even have been the final trigger or cause it to set off again once it has gone into remission.
It's OK, the immunologist just said we could look for years and still not find anything - so just take antihistamines before you drink a red wine you don't know you are OK with ...
Thanks PMRpro. As you say we get referred to the speciality they think our symptoms fall into but it seems that we seldom get reassessed. As one medic friend said their profession were very good at putting people into a box but then it was very hard for the patient to get out of that box. Which probably sums it up quite well.
I think my PMR is genetic as my Mum has had it albeit at around 83, not 56! My aunt on my Dads side they believe also had it so that’s a bit of a double whammy. None of my brothers or sisters have suffered and hopefully won’t! What triggered mine we will never know but it’s probably being fuelled by the stress of managing the condition and the continually varying symptoms. To add even more stress to my life I’ve been put on leflunomide and they recommend a very reduced alcohol intake which upsets my love of a glass of chilled white wine 😨
It’s hard to know what to try and what not to try. It was my knee involvement - very sore, swollen - that led to ideas of inflammatory arthritis along with PMR hence try leflunomide. I’d already been put on hydroxychloroquine after a visit to the super Dr Hughes to give it a go. Appeared to have little affect on my knees but I tolerated it. Local rheumy suggested adding lef which I started in mid February this year. I thought I’d try reducing the hydroxychloroquine to a single daily dose instead of twice and after a week my knees were swelling and becoming more painful. My first thought was I’d jiggered my knee at yoga as the pain started just a few days after then I started to think i might be missing my dose of hydroxychloroquine. Started taking it again three days ago and knees much improved. My conclusion is evolving! Either the combination of the two drugs is working for me; or hydroxychloroquine has taken a long time to build up; the leflunomide is not working yet and may never; or maybe I should forget about both of these drugs and just take an increased dose of steroids and accept I’m a 50% er for absorption and it’s taking me a long long time to taper (don’t get much support for the latter)
I’m currently tapering to 9mg so if my next taper is faster perhaps the DMARDs are working. Who knows??
I was having problems with my knees too. (Only one symptom of the varied I've experienced). It was the backs of my knees however, not really feeling like the joints. I had seen my new GP who, thankfully, gave me an injection in each knee. The relief came on slowly, then it seemed to absorb into the rest of me and I'm feeling so much better. Can't you see if this option is available to you? I've never heard of the medicines you describe, but wouldn't it be nice to cut to the chase?
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