Vasculitis and arm .

[artists]

Dear all . I have urticular vasculitis and am having problems with one arm . This is a first for me and I’m not sure if it is related to the vasculitis or not . My arm is heavy ,very painful ,swollen and l have hard hard lumps running up my arm . I have had to stop driving , and can not use it at all, even to tie shoe laces or lift anything. Could this be something as simple as tennis elbow ? Although the painful lumps are a mystery . Thank you .

[piglette]

It could be panniculitis although that normally appears on legs and feet, it can also appear on arms sometimes. Have you talked to your doctor?

[PMRpro]

Please get it checked out - it could be a variety of things, some are nasty and need medical attention - even if it is a holiday.

[artists in reply to PMRpro]

My GP thinks vasculitis is “ a bit of muscle cramp” the last time l asked him a question. I see the consultant in a couple of weeks so l will ask him. I just didn’t want to mention it if it was something as small as tennis elbow . As my arm is much worse today l think l will mention it . It improves if l don’t use it at all , so l shall do nothing but read for the next two weeks . Thank you .

[PMRpro in reply to artists]

It COULD be a clot or stenosis in the arteries. Your GP is a tad ignorant of the potential effects of vasculitis - he needs some education.

I have to say, if I was totally unable to use and arm, I'd be in A&E like a shot and if I couldn't drive there I'd use at least 111 and probably 999 who would be looking to rule out stroke first.

If you are able to use it if you do nothing otherwise it does suggest there might be restricted blood flow to the muscles or a trapped nerve. How is the pulse in that arm?

[artists in reply to PMRpro]

I have a strong pulse , but it has occurred to me it might be something to do with the veins as the swelling follows in a line . It’s difficult making a fuss , when l have felt such a fraud for years . I might phone the specialist, at least l will definitely mention it on my next appointment. Thank you for your help l will watch it carefully for the next 24 hours .

[jgold in reply to artists]

Please never think of yourself as a fraud or of making a fuss. The vasculitis consultants who see me in clinic have both made it very clear that I should tell them about everything healthwise that has happened since my previous session. However trivial it may seem to me, for them it might provide information relevant to the vasculitis. Further, if it's a medical issue which is in any way disabling, they expect me to tell them quite quickly (e.g. by email and accompanied by a photo if there is anything visible ) even if it's being dealt with by the GP or another specialist.

[artists in reply to jgold]

Sorry l have managed to answer to myself , but l meant to answer you . Dear me , bad day !

[Hoofprints in reply to jgold]

Your specialists sound great. Do you mind sharing ( by P.M. if you like) which team you are managed by?

My urticarial vasculitis seems to be getting worse and I'm ping ponging between consultants who disagree on how I should be managed. I'm always careful to list my symptoms, but my rheumatologist doesn't say much in response! I feel like a fraud, or someone who is making a fuss about nothing.

I have had lumps come up in my thigh muscles over the past 3 weeks and although the biggest lump isn't painful, my legs are in tremendous pain. I have even more difficulty mobilising/, standing on my legs. now. They are burning and swollen.

My G.p. is sending me for an U/S of the worst knee and leg as she doesn't know what the lump is and thinks it might be a lipoma. . She's told me to keep using the muscles and gently increase walking. I don't know of this is causing more harm- it's certainly causing more pain and the swelling is spreading up my thighs.

I hope you get answers, Artists, and if I find out what this is in my leg, I will share by way of a post.

[jgold in reply to Hoofprints]

I attend the Royal Free Hospital, Pond Street, Hampstead, London NW3 2QG. Nearest tube station is Belsize Park (Northern line). Their vasculitis team is part of the renal department, so the consultants are nephrologists. However I believe they deal with all types of vasculitis, whether or not there is kidney involvement. I am mostly seen by Prof. Alan Salama or Dr. Sally Hamour - you can find their details via royalfree.nhs.uk/services/s... They have managed me since MPA was diagnosed seven years ago. They have successfully controlled the vasculitis so that the moderate kidney damage that it caused has not worsened. I believe they have patients up to 70 or so miles from London. Hope this helps.

[Hoofprints in reply to jgold]

Thank you, that is really helpful. I wish you good luck going forward 🍀💐

[artists]

Yes l think you are right . It takes time to separate the way l have been treated before diagnosis to now . The consultant l see is very understanding, it’s me that has to relax and trust them .

[Bigdoggie]

I was diagnosed with large vessel vasculitis in August 2019, 14 months after I developed symptoms which involved weakness in my left arm, a dry cough (which I never get) and even non-migraine optical problems with one eye on a few occasions. My symptoms were not as serious as yours and I was still able to drive, but do tell the consultant and never, ever feel as though you are wasting anyone’s time. It took over a year for me to be diagnosed and I felt like a hypochondriac going back and forward to the medical centre until a GP ordered a CAT scan which was followed by a PET scan a few months later, then diagnosis and then finally sent to a consultant rheumatologist.

I have also suffered tennis elbow which was a pain around the elbow for approx 8 months, but nothing like as bad as you are describing, so please mention everything to the consultant.

I check and record the pulse and blood pressure in both arms ( 5 times each arm, so I come to an average) when I am relaxed and give the overall result to the consultant when I speak to him / her.

Are you now on medication for your condition?

Sorry for the long winded reply.

[artists in reply to Bigdoggie]

Thank you after reading all the comments l shall tell the consultant when l see him in a couple of weeks time . I am on a lot of mediation including rituximab infusions . I have been very fortunate to have had a good consultant. It seems daft not to tell him when i am unwell , part of me doesn’t want to sound ungrateful for all the help l have had . I am aware that sounds really stupid. However l shall tell him , hopefully my face to face appointment goes ahead as planned . Thanks again .

[Bigdoggie in reply to artists]

I meant to clarify that I suffered tennis elbow @ 11 years ago, years before my vasculitis diagnosis. All the best with your consultation.

[Budapest]

My vasculitis affected my upper airways but also my wrist and arm. Before I was diagnosed with Wegeners Vasculitis in 2011 I had a very swollen wrist & forearm and there was a long pink/reddish line clearly running up it. The bone in my wrist became damaged. It can often now be sore and swells. I wear a splint when that happens & try not to use that hand for lifting even light things. I can't put much weight on it or use it much for even light gardening.

[artists in reply to Budapest]

It sounds alarmingly like mine !