pmr gca

thank you diagnosed with PMR GCA .been ok untill start to reduce on steroid reducing drug got to 7 but with a lot of pain now my bloods high and back up to 9 .Pin is one thig but canot risk the GCA

Hi Eileen I think your info is precise & valuable. I,ve been on pred for 4 yrs and as high as 60mg I,ve been on methotrexate,azathioprine and at moment ,mycophenolate Igm x2 daily down as far as 8/9 (single figs)pred and that,s when the fun started. at this point however, I hasten to add that the two consultants and specialist nurse are doing a thankless and great job so far and I wouldn,t want to change any of them, but it,s fair to say that at the moment, I feel I,m back where I was 4 years ago. I was told once that pmr comes on fast and after 2 years it can go just as fast ......I,m still waiting!! I do question tho the myco,te and wonder if it was working, has it stopped, cos I,m just the way I was before...very frustrating.

just out curiousity do you understad the blood markers

this week mine are

ESR 24  CRP 40

have u ever had the steriod reduces 

Only about a quarter of people are off pred in 2 years - and they are at higher risk of a relapse and a second dose of PMR. About half need something like 4 to 6 years and the rest remain on pred for even longer, a few on a low dose for life. Unfortunately many doctor appear oblivious of this despite the fact it does appear in the English language literature. The standard German language rheumatology textbook states wuite clearly that the average length of an episode is 5 years - and in my experience German speaking doctors are far more relaxed about their patients being on pred for so long.

No, I have not had "steroid sparers" and if any doctor tried to persuade me to try them then I would refuse, changing doctors if necessary. It isn't a problem, I'm in a German-speaking area and the doctors believe there is no role for such substances for most patients. The evidence is very mixed for methotrexate, one study said it helps, one said it didn't, one didn't know - they were all relatively small so not very meaningful. There have been no controlled studies for other drugs so it is doctors experimenting on the patient when they try them.

I am of the opinion that when they do work it is likely that the diagnosis was wrong and the patient has LORA (late onset RA) or both LORA and PMR. A few people on the forums were able to reduce their dose while taking such drugs - but at a later date, having reduced the pred dose, they had major flares, one developed GCA. PMR probably waxes and wanes in activity so it is quite likely that people are able to reduce the dose while the activity is lower only to require more when it increases. Had they not been encouraged to reduce so far because they were on a steroid sparer (SS) it probably wouldn't have been noticed. And all these drugs have side effects of their own - plus we don't REALLY know how they interact with any other drugs we are on. They possibly do know directly for some drugs, the SS with pred for example, but once you add other medications into the mix the overall effect is not known - that isn't how clinical trials are done.

The ESR and CRP are inflammatory markers - they indicate whether there is inflammation somewhere in the body but they are not specific to PMR. Your ESR at 24 is "within normal range" - what is found in 95% of the healthy population. Whether that is normal for you is another matter, my ESR is 4 so 24 would be massively increased for me but in fact mine never varies, something that happens in about a fifth of people with PMR or GCA. Your CRP could be about double the usual top level on the basis of the figures I come across - but without knowing what your hospital laboratory has as its range I can't really say anything, they vary from lab to lab because the techniques used are slightly different. So without that 40 is just a number (this doesn't apply for ESR). But both are just indicators - other things can affect them, there may be a lag in their change. The symptoms should always be king - return of symptoms indicates that the pred dose is simply too low to manage the symptoms, because that is all that it can do, manage the symptoms until the underlying autoimmune disorder burns out and stops causing symptoms. Then you will need no pred.

If you have been up to 60mg - did they suspect GCA? That is a more normal dose for that as the risk of GCA is that it may cause visual loss and speedy action is required - in "just" PMR with no indication of GCA you are uncomfortable but not at such risk and a much lower dose will achieve a good result for most people, just it takes a bit longer. What we do often see on the forums is that using such high doses does make it more difficult to reduce later. Yoyo-ing doses definitely does make the next reduction more difficult and it is even warned against in the literature.

thank you just been on hols so not been picking up messages. Yes they though it may nbe gca as very bad head but test proved nothing as already on pred .

I am on 9 mg pred the mycophenolate 500mg 2 tab x 2 daily.these tab are givin for organ transplants , and yes i feel like a guinnea pig .In feb this year i was on !2 mg pred i was in some pain but also had had a lot of stress over the previous 6 months .i was given a injection to help me lower the steriods and untill this other drug got in my system ,was started on a lower dose then incresed, I find i cannot do anything after taking them for at least an hour then they still make me wrench bringing bile acid off my stomach .My foot started to swell and i could not put to floor i had ice packs that reduced pain ,i still managed walking in pain though because of the heat on hols, then the swellin and pain went to knee ,i was rather worried then ,i decided to reduce the myc to 1 tab in morning and 2 at night ,guess what it subsided within a few days ,although not gone entirely a big difference ,so waiting for blood result to see if diffrence.

they have tried methotrexate and azathioprine berfore this drug ,both had very bad effects .4 years on and i dont feel to have moved on.But 9mg is the lowest i have taken .So not sure what to do next.when i have been trying to reduce pred it has always been winter and makes me wonder weather this was a good time to try as the summer months i have managed .anything you can share would be good

I don't think there is much I can add to what i've said above. Personally I don't understand the doctor's fear of having a patient on, say, 10mg of pred longterm compared to using the other drugs which are also far from perfect and can have some very nasty side effects.

Where do you live? Have you ever had a second opinion? 

we live rotherham area ,no not had a second opinion thank you

I would ask to be referred to Chapel Allerton, Leeds to (specifically) Dr Sarah Mackie and her team. They are very active in research in PMR and GCA and have a multidisciplinary team so there is a very broad base of experience and knowledge. A second opinion never comes amiss when there are difficulties.