Hi everyone,

Realise its been a while since I've been here, but things have gone belly up again

Back in July, I had severe problems with my bowel which were only controlled by high dose of steroids (self medicated as couldn't get anyone interested in what was happening) which ended up with me being admitted to hospital for five days. CT scan and ultrasound came back clear and was discharged with gastro specialist saying that they don't know what's wrong, but RA complicates things. Treatment for RA suspended as the tocilizumab can complicate bowel problems further. Fought to have a follow up appt which eventually took place on 3 October and had a colonoscopy on 8 October - this came back relatively normal. Currently waiting for biopsy results.

Late August, I developed a rash on my legs and feet - red all over but not particularly itchy - went to GP who said it was erythema nodosum. He gave me some antihistimanes and sent me for chest x-ray. The EN then ulcerated and I went to A&E who gave some antibiotics telling me I should see rheumy asap - this was about a fortnight ago.

Saw my rheumy this Wednesday (10 Oct) and he said its rheumatoid vasculitis and chances are the bowel problem relates to this as well. He took photos of my legs and feet (now just open sores, some scabs and one or two spots of necrosis) not as red as they were as the antibiotics had reduced the redness in the legs which I now know is skin vasculitis. I had an emergency steroid infusion there and then and am going back next Friday (19) for second infusion. Tocilizumab will be restarted shortly as well. Have received follow up appt for 14 November.

So what's the deal with RV? I am looking at various sources online, but feeling somewhat flummoxed and overwhelmed by it all. In the time I've had RA (only a short four years compared to some members) I've never felt defeated by this disease, but do now.

Nina x

Hi Nina - so sorry to hear of your complications. I don't have any experience of RV, but I found this link very easy to understand. It sounds like this is a very rare complication of RA( 2 to 5 %), and even less common in women than men, so you've had a really rotten luck.

I do hope that you get good treatment now that you've got a diagnosis - maybe the uncommon nature of RV might get you some special attention. I suppose that the only things you can do are basic lifestyle stuff, like being extra careful with what you eat, obviously not smoking (although I'm sure you don't, and I'm sorry if that doesn't apply) and being meticulous with keeping the skin rash clean and dry. Please feel free to vent your feelings here - it's why the forum is here.

Really feel for you - take care - Sylvia xx

Nina, I'm just concerned that the thing about serum sickness hasn't been looked at
There was a lady on here called Barbara,
She had a similar reaction to some of the biologics with sores on her hands and feet poor love
Horrified at the lack of dr interest
Just so arrogant some of them!

Hope the steroids are improving things lots in the meantime

Much love
Jenni xxx

Thanks everyone for your replies.

The steroid infusion helped as are the antibiotics, the skin vasculitis has almost disappeared just some faint markings now, and the sores on the feet are mostly scabbing up. Have a couple of very painful sores on my right foot which cause me a few problems, but I do have my second steroid infusion this afternoon.

Zena - if that happens, I would definitely get it looked at by at least your rheumy nurse - better to be safe than sorry.

Sylvia - thanks didn't realise it was such a small percentage although had understood for it not to be common. I've never smoked, not even a drag as a teenager just to try it so to get something where the first line of advice is to stop smoking is actually annoying! Thank you for the link I hadn't seen that site.

Jenni - I do of course remember Barbara, I recall it being a reaction to Humira - I was about to start on Humira when we saw her at Leicester a couple of years ago. xx

Bye for now Nina x

Hello Nina

Been wondering how things are so pleased to read that things are getting better for you.

I did google it, wish I hadn't really, but on the other hand I suppose it is good that I have a little more knowledge of what RA can do.

Hope you are feeling well soon and your painful sores heal.

Paula x