vasculitis - can anyone advice?

susie123
susie123 Member Posts: 11
edited 3. Apr 2015, 14:51 in Living with Arthritis archive
Hi everyone. I have just been to the hospital. After 4 weeks of not knowing what was wrong with me, they did more blood tests and said I tested positive for vasculitis. I am so scared. I have to wait and see a rheumatologist now but not sure when that will be. Does anyone else have vasculitis? I am not allowed to work at the moment and all I can do is lie on the couch with my feet up. :(

Comments

  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    Hello again, Susie. Well, I had a look on Arthritis Research UK which is a very reliable site and here's what they say about vasculitis. I hope it helps.
    http://tinyurl.com/ofg3os8
  • susie123
    susie123 Member Posts: 11
    edited 30. Nov -1, 00:00
    Hi. Thank you for that. I have already looked at it. It would be great to talk to someone in the same situation but looks like noone on here has vasculitis. I am now getting strange lumps (nodules) on my feet. Only my left foot is affected. Also I got 3 lumps now. Started with 1 a week ago. They are on the side of my foot and on top of arch. What are they? Are they dangerous?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, at least you have an answer to one thing and that is good. Please bear in mind that people who share the same condition as you may not be members or if they are they don't post for whatever reason; many don't bother with posting until they need answers.

    We are not doctors so cannot diagnose what the lumps may or may not be, that is something to raise with your GP or rheumatologist. Right, I'm off back to bed 'cos I'm having one of 'those' days. Take care and keep in touch. DD
  • susie123
    susie123 Member Posts: 11
    edited 30. Nov -1, 00:00
    Hi, so I just found out that the hospital didn't bother referring me to see a rheumatologist. I am not very happy about this as I was told by the doctor at the hospital he would make sure I was referred urgently and hopefully seen by a rheumatologist within a few days. I just spoke to Patient advice and complaints team and they spoke to the hospital who said they can't do anything until next tuesday when the doctor is back. So I was put on sick leave, told I can't walk and work and stuck at home doing nothing while nothing is happening. How nice, I just love NHS!!! NOT
    sorry for the rant but I am so annoyed. thanks
  • oxon
    oxon Member Posts: 2
    edited 30. Nov -1, 00:00
    Hi susie, vasculitic has numerous causes, sometimes no cause at all, other times due to an immune response to infections/drugs.
    It can be associated with autoimmune rheumatological conditions like lupus and rheumatoid but that would have characteristic clinical signs and blood test results and the hospital would likely have made the diagnosis at the time. You don't mention that the docs gave you any treatment, that's a good sign as sometimes vasculitis can be systemic which means it can involve organs also especially the kidneys (causing inflammation found by dipping urine showing blood/protein and raised blood pressure) which would have been picked up necessitating immediate treatment with immunosuppressives like steroid tablets. If you didn't have this it's likely you have a limited type. If you have nodules on your feet you may be able to get a jump start by seeing your GP and pushing them to refer you immediately (ask him to phone them that day) for a same day/next day dermatologist review in order to take a sample (biopsy) of the nodule which could clinch a diagnosis. If you're desperate you could see a derm privately but prob unnecessary. If you see a Rheumy he would prob need a dermatologist to biopsy the nodule anyway. That's the best I can do with limited info you've given. Best wishes
  • susie123
    susie123 Member Posts: 11
    edited 30. Nov -1, 00:00
    Hi, thank you for your response. I was given prednisolone tablets for a week however I wont have any after tomorrow. I was supposed to have my urine checked at the hospital but they forgot to do that, although they asked me to give a sample, 5 mins later they just told me I can leave. I did ask my GP to check those lumps or nodules on my feet and my GP said its just a bone and looked at me like I am a liar. He didnt bother to check them properly. The lumps are slowly disappearing tho now. I am not getting anywhere with anyone. Im not sure what to do really.

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