What to do next, ideas welcome please!
Posted , 2 users are following.
Having split my dose (14mg) becuse of blurred vision....when lowering to 13mg, experienced stiffness/fatigue before pm dose....I have now tried at breakfast taking the 13mg in one hit, but fatigue still there....feel like I could sleep all day! (and blurred vision again) so harddsly leaving my house at all...I was told by rheumy in April, if I still feel ill in August, she will try me on the dreaded MTX "to get me off steroids!"....no way...I have seen the suffering close hand that the drug does....I know Eileen will probably say, I`m not on high enough dose for the symptoms....but I`m now lowering .5mg every 6 weeks...what to do next I ask!...I`m due to lower to 12.5...rhemy wants me on 10mg by August....are there any other drugs to help come off steroids? I admit they don`t suit me....I never tolerate medication very well at all. (have been on pred 3 years) Any suggestions very welcome...Thank You.
2 likes, 5 replies
EileenH linda17563
Posted
MTX DOES NOT GET YOU OFF STEROIDS!!!!! Where do they get this idea? It MAY reduce the dose you need. Or it may not. I do know a few people who say they do feel better on the MTX or AZA and notice if they have to stop taking them for any reason so I suppose it is worth trying - but a lot of people who were being threatened with one or the other have managed to get lower by VERY slow reduction. The question also remains of course: Is it really pure PMR? There is often confusion in the early stages - one in 6 patients gets a revised diagnosis from PMR to, more often than not, LORA. Or you can have both - or it is a mix of autoimmune disorders giving an overlap of symptoms which respond to different drugs.
Did you drop from 14 to 13 "overnight" so to speak? The fatigue could well be because of the change, or the change from the split dose - why did you do that?
linda17563 EileenH
Posted
She gave me a blood test sheet, so if I still feel ill to have the test, so she could see what`s going on....I`m afraid to do that, in case she contacts me to go on the dreaded drug....but I assume I can refuse to take it? I have had fibro/Me for many years, but as I under stand it...these at not autoimmune disorders, in the true sense? Why do Rhemy`s seem to think MTX gets people off pred....it just dosen`t make any sense. If there are other DMARDS, and I do cave in and have the blood test...I will quote those you have given to me....but chances are she will tell me to "stop talking!".....
that is my vision of her now....Thank you Eileen....
EileenH linda17563
Posted
What we call PMR is the symptoms of an underlying autoimmune disorder - as long as that autoimmune disorder is active you will have some symptoms and need some pred. Using the other drugs MAY help you manage with less pred, but there is no guarantee they will get you off pred. If that were the case - why isn't it used all the time as standard practice? It isn't. Neither pred nor anything else will influence the course of the autoimmune part of the illness - it will burn out at some point but until then you will need some pred if the PMR symptoms are so severe you can't manage without it.
There are a lot of rheumies like this - why I don't know. Maybe someone in your area can recommend a good one. Are you in the UK? Is there a support group near you?
linda17563 EileenH
Posted
Why isn`t it with research and feed back from patients etc....and general results from support groups....a practice that has to be "followed" as such by all rheumies?.....it shouldn`t be so hit and miss with who we get and how they treat us. When I had to be referred back to hospital I asked my doctor if I could see someone else, she said, because I`m already with her, chances are I would be put with her again....she was right! Thanks again Eileen....
EileenH linda17563
Posted
There are guidelines from the British Society of Rheumatologists - ignored and often dissed by doctors it has to be said. "Guidelines are just that, guidelines. Professional experience is paramount..." Some I've come across don't even appear to know the symptoms of PMR and GCA! Then it depends on how big a department it is as to how many there are to see.
To be honest - if I were back in the UK there are a few specialists I would ask to be referred to to do shared care with the GP even if it meant a couple of hours or more journey. In despair, one lady is travelling from south of London to Leeds.