I have RA, but today I was diagnosed with Vasculitis.... - NRAS
I have RA, but today I was diagnosed with Vasculitis. Does anyone else have both?
How long have you had RA and how does the Vasculitis manifest itself? I know a couple of people have posted recently about having both so I'm sure they will come forward soon but just to offer my sympathy and support. Tilda x
I have had RA for 34 years and it came on me in the nailfolds and edges of my nails as black marks . My fingers were so sore and painful first before these marks came on. Thanks for the support! Dylis x
Hi there, ive lived with RA for 25yrs , diagnosed with vasculitis within the first 3yrs (from memory ),it was in my feet , my skin split and i truly thought my toes would burst , thankfully the condition improved and ive had no other outbreaks since.
The circulation in my feet is bad , had tripple fusions in both and a toe taken off .
Ive been on chemo ANTI TNF drugs and now biological combined with MTX for over 10 yrs,
keep positive and as active as you can, from my experience its the best route,( ive recently had my 19th opp), chin up and dont give in , i know its hard x
I don't luckily, and although OH has had episodes of vasculitis it's so much easier sharing the diseases out between us. But sounds as if you are managing to keep going despite everything, so well done. Polly
I have RA and Rheumatoid vasculitis rather than the ordinary kind, what drugs are you on?
Mary
Hi Dylis
Hopefully more members will be along to share their experiences of vasculitis soon, but in the meantime I thought you may find it helpful to have a read of our rheumatoid vasculitis article for a bit more information: nras.org.uk/about_rheumatoi...
Kind regards
Sarah
NRAS
Thankyou SarahKate the article was just what I needed because I was panicking a bit.
I must have the nailfold vasculitis which isn't so serious has I thought. The article explains a lot. I am having more bloods done too. Dylis
First of all I want to thank you all for replying and Sarah, that article was just what I needed because after seeing my Rhumatologist on wednesday, I have been panicking and now I know that it is called (nailfold vasculitis) and its not so serious. That article explained a lot to me. Thanks Sarah! I am having bloods done just to check though. I have had RA for 34 years now. It came on me when I was about 20 years old. Over the years I have taken many different drugs. I have nodules on my elbows hands and feet and my lungs. I have Iritis also. I have had nuckles replaced in both hands, and pulmonary fibrosis, but I have a good quality of life and Im fine. Sounds awfull now I've wrote it down!! In the last 3 months I have had very sore fingers which have been swollen on the nail edges and then I would have black mark on the skin folds and nail edges and then they would go and then the whole process would start all over again. My husband said to see my rhumatologist because anything out of the ordinary is happening for a reason. Glad I did now . I was only taking one 5 ml steroid and 2 azathyropine daily besides pain relief, but now my steroid dose has to go up a lot and my Azathyropine has to go up. Hopefully that will dampen it down! Sometimes doctors don't explain and I'm the type that looks on the internet and frighten myself. Also I dont think people understand. They think rhumatoid is just aching joints, they dont realise its all going on inside your body where people cant see.
Dylis
I have ra and a form of vasculitis called Wegener's Granulomatoxis [WG] or as House called it "wegners"
recently it's name was changed to GPA grauloma with polyangitis.
if you go onto the green banner at the top of this page and click on "my communities" you will see "browse other communities" click this and scroll down to "vasculiries uk" here you will find other helpful people - see you there.
regards,
sandra.
Hi Dilys
I've been diagnosed with RV this week. My GP had previously told me I had Erythema Nodosum but Rheumy consultant said that's not right its RV. Primarily its on my feet and lower legs and I have open sores, scabs and some necrosis and very very sore feet. I was given a steroid infusion on Wednesday and am going back for the next one next Friday and they will restart my treatment with tocililzumab. This was suspended in the summer as I'd had major bowel problems - had a colonoscopy on Monday which was essentially normal. Rheumy stated that bowel problems are due to RV. I will look at the link above given to you to see what is affected and how it can be treated.
Feeling a little scared and overwhelmed here though.
Nina
Newly diagnosed with RA
Recently diagnosed with RA. 
Newly Diagnosed with RA
Newly Diagnosed with RA
Does anyone else have a problem with sweaty head?
