My symptoms are flaring up and going down back and forth. Could this be because of the one week on 60 of prednisone? I’ve been off for 3 days now. Seems to not only be my temporal artery. Chest pains under left breast now too. I’ve had the hip/ back pain and swelling along pelvic bone. No one cares about that. I was at ER and my BP was 140/105
They still sent me home.
O m g I had the same ,a /E had no clue same as reumatologist s , I was told to loose wieght ,exersize , made to feel I was making it all up ,an that was a year ago . I even saw stroke nurses at a /e .not good eh ? An don’t get me started on the pain in my head or my face or behind my eye .i guess my greatest fear is loosing my sight ,do we all live with this fear ????
I ask as I ask have read ,many who are on treatment eventually do ,please can any one help advise me
Sorry Boozsa I’m not clear on what you saying. I presume you have GCA as you were put on 60 mg. But only for one week? You say you are now off pred. Do you mean no pred at all? Who advised you? If you have GCA you need to be on pred, otherwise your eyesight will be compromised.
If you get back with some answers the more knowledgable ones will be able to help you as Europe wakes up.
Hello. Seems bizarre that if you had symptom relief on 60mg that they wouldn’t keep you there just in case it is GCA presenting in a slightly younger age group. I does happen and there are a few on this forum. The biopsy does not guarantee a diagnosis either, because affected cells may not be present in the sample taken. Mine was negative (aged 54) but they still went the whole way with steroids. I would want to know from them why, if your symptoms were relieved by Pred are they risking your eyesight just because your age doesn’t quite fit. 43 isn’t a million miles away from 50.
Your blisters - has anyone seen them? Could be shingles and the cause of the GCA, which might be the reason it got you while ‘young’.
When you say pelvic bone, where do you mean? The pelvis is a large thing, or do you mean pubic bone?
Are you getting a head CT scan to rule out other conditions?
I’ll still there because that’s quite enough and others will fill in the gaps better than me.
My GP made me stop the prednisone 4 days ago when he consulted a rheumatologist over the phone who said my labs were normal and I was too young. Now I’m having symptoms again. They seem milder still after the prednisone but gradually getting worse. So I have pelvic gurdle pain but this is the pelvic/ hip bone down through the groin. It can be swollen, tender, lumpy and have an awkward pulse. I’ve had head CT and MRI. MRI in 2016 showed early age small vessel disease and one after that showed a kinked appearance to optic nerve. My other post explains all my symptoms and dead ends.
Also it it common for the severe headaches and face/jaw pain to come and go? I get the really sensitive scalp and the artery flares up with the pain. I guess that’s where I’m confused. Is it constant or come and go like the other symptoms?
Well, it is not uncommon to have normal inflammatory markers too. Mine were in the normal range but high for me. Improvement of symptoms on Pred and creeping back without suggest and inflammatory condition of some sort. Your scans have said something is up, so have they said what IS going on and with some sort of rationale?
Anyway, have they rule out other vasculitis causes, some of which occur more in under 50’s. Look as this
So sorry - me again!
So upset.
Not so. Happy anymore: sacral fractures
So upset
It was going so well
