I have had Vasculitus for around 5 weeks now - my legs are covered!

The doctors have been seeing me on a weekly basis at the hospital for the finally diagnosed 'Vasculitus'. They are unaware of what type I have and are confused as to why I do not have an underlying condition that has triggred this vasculitus. I do also have Diabetes but all my blood and urine tests have come back clear. I have been put on antihistamines, dicofenac (Anti imflammtory) and finally a low dose of steroids Perisdolene or something like that -.... nothing is helping these horrendouse boil like red spots all over my legs feet and arms and stomach. Doctors cant tell me anything at all - All I have been told is I should google the condition and sit tight?!

I have suffered the joint pains horrendously to the point I have been reduced to tears. Im only 26 and Im really suffering - reading a lot of these posts I can see people have it a lot worse than me. Will this ever go???

7 Replies

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  • Well depending on the type of vasculitis you have it normally takes something a little stronger than steroids. I think it might in you case as well. I suggest you contact John Mills. he will able to advise you better than me. his conatct details.are john.mills@vasculitis.org.uk or ring 0300 365 0075 .

    I would say I do not thing sitting tight is the right choice. Give him a ring.

    Let us know how you get on. It is not easy in the first few months and you can talk here about your experiences and concerns.

  • seeing this website and the Vasculitis website Ive realised how serious and big the condition is but I just get strange glares and lack of information from my doctors and thanks I have emailed him - Thank you!!

  • I am afraid most us have, or are, battlng against ignorance of vasculitis in the medical profession. It is likely your doctors have not seen much, if anything, of the symptoms indicative of vasculitis that you are describing. There is not always an underlying condition that causes it, in fact, as far as I know, primary vasculitis (ie. no linked previous medical condition) is the most common.

    Basically, you need a definite diagnosis, and quickly, to make sure you get the appropriate treatment. From the list of things you are taking, I don't think you have been given much of the medication you need (presuming that vasculitis is the correct diagnosis). I would confirm Jann's advice - ring or email John Mills and ask his advice.

    It would be useful to know which hospital is seeing you. Not all hospital consultants can successfully deal with vasculitis patients without outside advice and help as it is such a rare disease. You might like to check the Vasculitis UK website which give details of each type of vasculitis which might help you to have a stab at identifying your symptoms.

    Let us know if we can help further and good luck!

    Ayla

  • You seem to be in the same boat as me, I,ve had Urticarial Vasculitis for 20years, but its only been in the last 18months that it has started to " play up" and so far the Consultants have no idea why it,s happening , I,m also in the position of there being no obvious cause for the sudden change, all test coming back normal, I am also on Prednisolone and Anti Histamines, so far there has been no change in my condition, I,m sorry I can,t give any positive advice as I am still looking for some myself, but I thought you would appreciate that there are others out here ,in the same position as yourself, hope you are able to get it sorted soon.Everyone on this site are very helpfull and supportive , and as you will find someone somewhere has had the same experiance as yourself and may be able to help.My very best wishes are with you.

  • Hi guys,

    Thanks for the messages. I have emailed John - he and I are exchanging emails. I have sent him more info about the symptoms I have had so far!

    The only thing I remember is the day I noticed these small spots I had got caught in the snow for hours and I have never been so cold in my life! I have no idea if this has any relation or that I have been extremely stressed of late.

    the tablets im taking are not helping me what so ever.

    I was lucky enough to get a referral to the hospital - I had to go to my gp 7 times in the space of 2 weeks to explain how much pain im in and he simply told me to wait several months for an appointment at the hospital.. in the end i resorted to goin to walkin doctors, a and e and emergency clinic on a sat and noone could help me. actually the doc there jus looked and said its a fungal infection - when days later my skin biopsy confirmed it was vasculitis..

    its horrible, my legs are covered in marks - I dont even know if they are going to scar?

  • I was finally diagnosed with vasculitis after being extremely ill for 18 months. My legs were affected with a rash which has not gone, and also as you have boil like lumps appeared. If fact one doctor thought it was razor rash !!!! Have your lumps erupted or do they just come up and down, if they erupt like mine did they take a lot of careful healing and they will scar, I have several marks although they will fade. You need to get the proper treatment that is most important, and think about the other things when you have the vasculitis under control. I have had non specific vasculitis for 6 years now and have had 2 flare ups but at present am in remission , things will improve when you get the correct treatment. Hope this helps, wish you well.

  • MAy I ask what treatment and additional issues you had to the boils and marks on your legs?

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