Connect
VASCULITIS AND DERMATOMYOSITIS/RA OVERLAP
Wondering if anyone else has a similar combo? I was already being treated for the DM/RA overlap with Rituxan, SCIG, Methotrexate and daily Medrol. However my legs have been hurting for some time and my PT has been unable to massage them so I was sent to a dermatologist for a biopsy to rule of panniculitis (which seems to have been ruled out) - but at the bottom of the report it says “Note evidence of vasculitis identified”
I have calls into my rheumatologist and the dermatologist, but I’m just wondering what others are taking for vasculitis … are other tests run … who do you follow with for the vasculitis?
TIA for any information!
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
It will be important to ensure the dermatologist and rheumatologist communicate directly to confer about
type and degree of vasculitis. Perhaps it may be considered related to the known diagnoses. Have one
or both review the pathology with the derm pathologist.
They may order some special stains and antibody tests on your tissue sample. They may feel one physician has
more experience treating your findings. Keep asking
your relevant questions.
-
Like -
Helpful -
Hug
1 Reaction@seniormed thank you 🙂
I would like to know how to find a good rheumatologist. I probably will be sent to one, soon, as the vasculitis isn’t going away, despite months of treatment. I went to a rheumatologist several years ago, and for no help, given at all. Was really trips and time wasted !
-
Like -
Helpful -
Hug
1 ReactionIt’s taken me 4 rheumatologists to find one that listens and keeps trying to help. I’m on my third neurologist with a new one booked for March after this one told me I needn’t bother with PT “As I’d never get any better.” Maybe I won’t, but I’d also like not to lose what mobility I have, which apparently didn’t occur to him. Maybe 4 is my lucky number and I just never realized it!
My best advice is don’t give up after a couple of appts, but if you feel disregarded or that your doctor isn’t listening or taking you seriously, then keep looking until you find one that does. In my case: I kept saying I can’t lift my right leg … I have this V-shaped red patch on my chest … my legs drag … my muscles hurt” - each rheumatologist essentially shrugged their shoulders or told me “they’d keep an eye on it.” All the while I was Tif Gamma positive and needed cancer screenings. I lost 7 years on the wrong drugs because doctors weren’t listening, so I’m much more assertive now. I don’t need to tolerate distracted or disengaged doctors, or doctors with god complexes or rude ones. I’m looking to be treated with respect, courtesy and professionalism. Give me those 3 things and I’m happy. Good luck 😊