Vasculitis

[Libluce8]

Hopefully finally, after 4 years, getting to bottom of husbands symptoms, including the intense itching and burning skin. He saw rheumy yesterday who said his RA not bad enough for DMARDS despite putting him through various side effects for last 4 years when rheumy prescribed them. Husband first saw rheumy in 2010 with various aches and pains plus itching and burning skin. Rheumy dismissed the itching as nothing to do with RA. Yesterday he says that he is increasingly working with dermatologists, in fact running joint clinics, as seeing more and more patients with skin problems linked to RA/DMARDS !!!!!! Yet last year at this time his registrar followed same line as him and even in September the rheumy nurse said rash/itching nothing to do with RA. Husband seeing dermatologist tomorrow then back to rheumy at joint clinic with dermatologist. Hopefully husband will finally, after 4 years of hell, get some treatment !

[Hidden]

I feel very sympathetic to your frustration on your husband's behalf libluce8.

I was diagnosed with seronegative RA over three years ago once my polyarthritis finally settled in my hands and wrists in a way that meant my rheumy had no choice but to diagnose me after 9 difficult months of symptoms with my GP fully supporting that I had some kind of inflammatory arthritis going on.

I took MTX for two years in both oral and injectable form but because of the nine months of untreated symptoms my RA was quite hard to get under control and I didn't tolerate higher doses of MTX well so Hydroxichloraquine was introduced. I also had an allergic skin reaction to Hydroxy after a year and a half on it and earlier my GP had tried me on Sulfasalazine and I'd ended up in A&E with a severe allergic reaction to it. I did seek a second opinion from a connective tissue professor who confirmed the diagnosis of RA with autoimmune add-ons but this has just confirmed my rheumy's supposition that I don't have any other connective tissue diseases - which I don't think is the point really!

So now I've been off DMARDs with my rheumy's approval for 8 months - with him saying I don't qualify for the anti-tnfs yet as my RA appears to be non-erosive, despite my high inflammatory markers and despite lots of acute nerve pain and a history of skin problems that goes back to my babyhood, including Alopecia. I don't actually want Biologic drugs but equally I don't want to take drugs that only address the symptoms and not the cause!

My joints might not present with RA just now so perhaps he is right to imply it is mild but it seems to have gone in other directions which he has been very reluctant to acknowledge. So I'm now under a neurologist too and saw a dermatologist as well last year who ruled out Vasculitis and put all my skin problems down to allergic responses to drugs.

No one seems ready to take responsiblity for treating my systemic inflammatory problems and it's very frustrating - although my GP is helping me fight my corner now to get back onto disease modifying drugs again hopefully once I get results from a lumbar puncture and special blood tests.

What I personally believe now is that RA can be mild but for some people it can also be more systemic and attack us in different ways when left untreated. We know that RA doesn't often go away so presumably it will be erosive in the long term too. The focus on joints alone and my allergic disposition has really not helped me get the treatment I feel I need. So I advise you to keep supporting your husband's right to be treated for RA - whatever ways it seems to manifest itself.

I'm not a doctor of course but your mention of your husband's burning and itching skin made me think of a very rare autoimmune skin condition which causes itching and burning of skin. The neurophysisiologist doctor I saw ten days ago suggested this might be what is ailing me 24/7 now. Perhaps you would like to Google Erythromelalgia (used to be called Mitchell's Disease) and see if it seems to fit the bill - in which case he could mention it to the dermatologist perhaps. It can go with RA, Scleroderma and Lupus as a secondary condition too but it's so rare that not many doctors know much about it.

Twitchy

[Hidden in reply to Hidden]

PS here's a link for your interest; nhs.uk/conditions/erythrome...

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Hi, I was diagnosed with Vasculitis in september 2014. There is a community on HU for Vasculitis UK, their website is: vasculitis.org.uk/ you will find lots of help and advice on both the website, and the HU page.

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I often feel that the well computerised diagnostic "google robot" will eventually help patients to get diagnosed in a timely manner and even offer the personalised treatments. Whenever I hear about incompetent Rheumatology doctors not diagnosing patients promptly always makes me think. Stress from dealing with the illness is enough for most patients. There ought to be an automatic feedback system on NHS to spot doctors, who are unwilling to listen to patients whose life is destroyed by this illness (and these drs well paid career remains safe).