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
Mrs.Mac-Canada bri21
Posted
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🌸
bri21 Mrs.Mac-Canada
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EileenH bri21
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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.
bri21 EileenH
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bri21
Posted
this week mine are
ESR 24 CRP 40
have u ever had the steriod reduces
EileenH bri21
Posted
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.
bri21 EileenH
Posted
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
EileenH bri21
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Where do you live? Have you ever had a second opinion?
bri21 EileenH
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EileenH bri21
Posted