hi im new
Posted , 7 users are following.
TRying to post on here.. but , not sure im doing it right. I was just diagnosed with pmr..For 16 years i was being treated for sjgrogrens and connective tissure disease. Feeling no better then when i started.. Have tried every immune suppresant and anti inflammaroty i think there is..
?Also have had infusions of a chemo drug..
?New doctor says the only thing that will help is steroids.. Meanwhile drs were always making me stop them. lol
NOw im on 12 mg of medrol and feeling better then i have in a long long time..
Im just learning about this and hope to find some helpful tips etc.
0 likes, 11 replies
Daniel1143 donna91261
Posted
Well, you've come to the right place if it is PMR. And if it is, you need to be on prednisone. You will hear this from others as well. It's the only "sure thing" for dealing with the inflammation and pain. It's not a cure; only a mask. But it works.
EileenH donna91261
Posted
As Daniel has said - the pred cures nothing, it just deals with the symptoms to allow a more decent quality of life in the meantime - because, unlike many autoimmune disorders PMR burns out and goes into remission for a good 75% of patients in up to about 6 years, some much sooner but rarely earlier than 2 years or so. The people in whom it burns out quickly tend to be at a higher risk of it relapsing than others though so it is a 2-edged sword!
But the important thing now is NOT to assume you are now cured and back to normal - the actual underlying cause of the smptoms is still chugging along and attacking your body causing inflammation and making your muscles intolerant of acute exercise. The secret is pacing and resting and avoiding/reducing the activities that leave you sore and extra fatigued.
This is a link to a collection of useful websites and information - with a link about pacing and managing chronic illness at the end - though you probably already know a lot about pacing!
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
kathy67492 donna91261
Posted
pauline36422 donna91261
Posted
donna91261
Posted
Thanks for all the replies. I'm looking forward to learning more about this PMR. I never even heard of it. Lol. But thanks for the welcome everyone. I have lots to learn. My one question is what it usually the main illness. If there is one
Anhaga donna91261
Posted
Here's a good introduction:
https://patient.info/health/polymyalgia-rheumatica-leaflet
EileenH donna91261
Posted
"My one question is what it usually the main illness. If there is one"
Sorry - don't quite get what you mean? For most people the underlying cause of the symptoms we call polymyalgia rheumatica is probably an unidentified autoimmune disorder that causes our immune systems to go haywire and not recognise our body as self so the immune system attacks body tissues as if they were foreign bodies, viruses or bacteria for example. But other things can cause the symptoms so there should always be other tests done to rule them out.
No-one knows WHY it happens so it is almost impossible to develop a cure as such yet but for this particular version of PMR, pred works well to manage the symptoms and allow a fairly good quality of life until the autoimmune part burns out as I explained above. In some ways it is like rheumatoid arthritis - without the joint damage.
donna91261 EileenH
Posted
Ok that's what I always thought Just was surprised with the new diagnosis of pmr. Thank you
EileenH donna91261
Posted
If you already have an autoimmune disorder you are at a higher risk of developing another than someone who doesn't have one. So you MAY have 3 different autoimmune disorders - or you may actually have just one that manifests with bits of various others that have in the past been given a fixed label. I have always envisaged autoimmune disease as a shop counter with a lot of shelves behind with various signs and symptoms piled on them. We stand in the queue and when it is our turn we are handed a selection - which may be a selection that matches an already existing label like Sjogren's, or MS, or lupus, or thyroid disease, or it may be a few from one and a few from another - and even one from even another. Nowadays they call that a crossover disorder - bits of a few diseases but not enough to say for sure It's "that" rather than "this" and for some selections they call it "Undifferentiated Connective Tissue Disease". It often makes little difference - the drugs they use crossover too.
It's all very complicated and it's no real wonder they get confused. The inexperienced doctors dismiss a patient like that because it doesn't fit their tick boxes - and it takes a long time to get someone who stands fare enough back to see the whole picture.
donna91261 EileenH
Posted
Yes I see. I was originally diagnosed with connective tissue Then sigrogrens. This dr doesn't think I have sjgrens at all. Lol. It's crazy. But I'm feeling better so I guess that's really all that matters
EileenH donna91261
Posted
It is possible to have what appears to be Sjogrens - but without the antibodies that confirm it IS Sjogrens. Then it is often called sicca (dry) syndrome - but Sjogren's can be a really severe illness all on its own and the symptoms need taking care of - the dryness can affect all sorts of areas of the body.
Yes - feeling better is what really matters as all that they can really do is manage the symptoms.