pmr gca

Posted , 4 users are following.

still battling on with this  ,steriod reducer now on 3rd alternitive mycophenolate, not seaming to work ,as much pain as 4 years ago ,they have put steriods up to 9 again ,as bloods high ,

they have mentioned injections that will work on pain ,does anyone know what they are are if they have had them.

Also been told diet can help build your own steriods in ,but canot find any help on this ,they does not seam any light in the tunnel at moment and the pain is draging me down .

1 like, 10 replies

10 Replies

  • Posted

    Hi Bri,

    Sorry to hear you're having such a rough go of it.  We're you diagnosed with GCA or PMR?   Most people with PMR begin at 15 or 20mgs and have at least 70% relief of pain within a couple of days. For me and many others it iis within a few hours. We're you diagnosed 4 years ago?   What dose and for how long were you at that dose when you doctor suggested you use a steroid sparer?  

    Reducing  must be done very, very slowly which is something many doctors don't understand.  By reducing to quickly you will likely have frequent flares and they usually get worse every time and take longer to get back to the dose that will manage the inflammation and therefore the pain.

    There are others on this forum that will be along soon that have knowledge and experience of both GCA and PMR and will have information that will be helpful to you.

    Take  care and hope you find something that works for you soon.

    Hugs, Diana🌸

     

    • Posted

      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
  • Posted

    I have no idea what your doctors are on about to be honest. The things they are doing are unlikely to "protect" you from GCA. The only thing that is so far proven to help in GCA is high dose pred - and 9mg isn't going to prevent anything. If GCA is going to happen it will happen and being on pred doesn't change anything - that is why you require watchfullness to identify the symptoms. There are no "steroid sparers" that work reliably and none of them work on their own in PMR even if they work for other inflammatory arthritides - so. frankly, it is unlikely they will help reduce pred significantly.

    In PMR the only reliable pain respite comes from an adequate dose of pred - however upsetting doctors may find this. It would appear you need about 10mg still. I had had PMR for well over 4 years before I managed to get below 10mg for more than a very short time each time. It finally happened when I started to use the reduction plan I call "Dead slow and nearly stop" - and it has worked for a lot ofpeople to get into single figures doses. You'll find it in the replies here

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    Whatever you have been told about diet, and there are things some people find does help, it has nothing to do with "building your own steroids". There are foodstuffs that have an antiinflammatory effect including oily fish, garlic and turmeric, and MrsO on this forum found they made a noticeable difference for her. They didn't replace pred though. Others have not succeeded in finding any diet that changes things.

    Pred is the pain-killer in PMR and I have not come across injections that remove the pain - if there were I'm sure they would be used more. If your current doctors are hell-bent on not allowing you to take an adequate dose of pred then I suggest you find another who will use a sensible approach. PMR comes when it wants, PMR goes into remission when it wants - and nothing is yet available that will change that. If the underlying autoimmune disorder that causes the symptoms we call PMR is still active then you need pred. There are a few other things that are being trialled to see if they make a difference. A current study is on toxcilizumab (Actrema) and it did look promising - what the results will turn out to be is not yet known. However - monoclonal antibodies, which is what it is, are not only VERY expensive but they also have possible side effects, some of which make pred look like an amateur!

    I do hope you can find an answer - but I suspect it will involve more pred. Did you get a good response at the beginning? What was the last dose you were good at? If not or the dose that works is high - the other question is as to whether it is the PMR we talk about that you have. But the bottom line remains that many people with PMR need something in the region of 10mg for several years - and all the attempts to force reductions and then dealing with the resulting flares makes the next reduction more difficult.

    I believe if they stop messing about and allow a patient to stabilse, whether the dose is 8mg or 12mg, and then reduce in not more than 0.5mg steps, possibly even spreading even that over a few weeks. then success is more likely - that isn't a totally uninformed opinion, anecdotal evidence from dozens of people on the forums suggest the same. The slower the reduction, the smaller the step-downs, the better people manage.

    • Posted

      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.
    • Posted

      just out curiousity do you understad the blood markers

      this week mine are

      ESR 24  CRP 40

      have u ever had the steriod reduces 

    • Posted

      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.

    • Posted

      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

    • Posted

      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? 

    • Posted

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

      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.

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