Advice on Rheumatoid Disease vasculitis?

[oldtimer2]

Diagnosis of vasculitis? I'd like to hear from anyone who has had this, what treatment they had, and how they managed it. It's driving me round the bend.

About nine weeks ago I started getting a rash on my legs, painful, red sploges as though I had splashed myself with hot water. It has gradually worsened and is now a sheet of red painful skin over my lower legs with lesions on my feet and thighs. A few scattered elsewhere. Now my legs have starting swelling as well.

I've had masses of blood tests and am ANCA positive but I'm not sure that helps. For the Rheumatoid Disease, I'm already on: prednisolone (5mg) azathioprine (100mg) and injections of adalimumab fortnightly, which seem to be the treatments also advised for vasculitis.

I'm putting my feet up as high as possible and as much as possible. It's disturbing my sleep, together with worse night sweats than usual. My mouth is sore and I'm eating lots of ice cream....

After much presure from me, I now have an urgent appointment with my usual (and usually helpful) rheumatologist in three weeks.

I know other people on here have a wealth of personal experience and would love to hear from you! Iknow you can't advise on medication - but what treatment have you had?

[springcross]

Hi oldtimer2. In addition to any replies you get here, I don't know if you know but there is a Vasculitis UK community on HU.

[oldtimer2 in reply to springcross]

Thanks -I was particularly interested in replies from people with Rheumatoid Disease as well.

[sunshineday]

Hi, my hubby has a range of autoimmune diseases including Rheumatoid Arthritis. He began to have problems walking, numb feet and pins and needles in his hands and feet permanently. He also had red blotches on his legs and swollen ankles. His GP referred him to a neurologist who was really helpful and diagnosed peripheral neuropathy caused by vasculitis. However he thought the vasculitis was rheumatoid vasculitis so referred him for a nerve biopsy to confirm this. The outcome was it was Rheumatoid vasculitis and the two meds used for this are either cyclophosphamide or rituximab. The cyclophosphamide was not suitable because of husband's lung problems so he has had two sets of infusions of rituximab seven months apart. He RA consultant is the main one now for his PN and RV as both stem from his RA. Rituximab helped his RA but not his other problems. I have been on the vasculitis site but Rheumatoid Vasculitis is not a common cause so not many threads on about it, as ANCA and other causes are more common reasons. Like you hubby keeps his feet raised whenever whenever possible, also takes meds to reduce odema and has bloods taken regularly. He struggles walking and has had several falls, one particularly bad at home, has various walking aids but his motto is never give up and never give in. I do hope you have some success with treatment.

[oldtimer2 in reply to sunshineday]

Thanks thats helpful despite being rather depressing...

[MW07]

Hi

I have had RA since 2007 but in the 1990s, when I was in my 20s, I had a type of vasculitis called Henoch Schonlein Purpura. Your symptoms sound very much like what I had with that. The doctors told me at the time that it was an autoimmune disorder. I cannot remember what medication they gave me, but I do remember they told me to keep my legs raised. It was very painful and incredibly unsightly, in fact I still have scars. If you have the same condition, I would not wait 3 weeks to see the RA doctor, because the condition can cause complications, e.g. with the kidneys, I think. I haven't looked into how it relates to RA, except that they are both autoimmune disorders, and many of these seem to overlap / co-occur.

Maybe you know all this...if not, hope it helps.

[oldtimer in reply to MW07]

Thanks for the warning about kidney disease. I've just taken a urine sample into the surgery. The blood tests didn't show any damage yet. There has been a distinct lack of urgency from everyone I've seen which I find worrying. Originally I was referred to dermatology as a routine referral. That would mean waiting for over a year.

If I was not already a rheumatology patient and could press for an appointment with them, I would be stuck.

Everything has had to be initiated by me. Rant over..

for now!

[Kags1068]

Hi old timer

I'm a long-term RA patient, and possibly like you, have had a number of related complications. As some of the eye problems I've had can be related to Vasculitis, and nearly 2 years ago I was taken to hospital as an emergency with what turned out to be an attack of Ischaemic Colitis, my rheumatologist seems to keep a close eye on things in terms of rheumatoid Vasculitis.

From the conversations I've had with him, and others I've met over the years, it seems that if it's considered "mild" then the treatments you are already on would be what could be used (although perhaps at slightly increased doses). If it's considered more serious and systemic, then it could be higher doses of steroids for a time, then possibly Rituximab, with Cyclophosphamide saved as a last choice.

I was swapped to Rituximab in March, but there was much discussion about whether it should be RTX or go straight to Cyclophosphamide. I asked if I could try RTX first as I've always had a bit of a dread of Cyclophosphamide (I very nearly had to have it in my 20's). Thankfully, the rheumy agreed. I hope you can get some advice soon. It really is horrible when we feel "abandoned" and can't quite get to who we need to!

Best of luck x