2 + years and no relief at all. Please help

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I was diagnosed with vasculitis over 2 years ago. I've done everything the doctors wanted me to do. I've been on chemo for about a year and a half now. And not to mention all the medication daily. I have just gotten worse. The pain I have everyday is unbearable. Does anyone have any advice or treatments that maybe worked. Please help. I feel like i'm being tortured everyday.

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  • Posted

    I'm so sorry you're feeling so rough. Is your consultant knowledgeable, experienced and a vasculitis specialist? Are they also experienced in where your particular type of vasculitis is attacking eg; you may be seen by the rheumatologist but you also need an ENT specialist to work alongside. If the answer to either if these is no, I would start asking for those to be met.

    Have you contacted the Vasculitis UK helpline? It is a webpage with the helpline number in the "contact" tab. It is manned by people with vasculitis so they know exactly how you feel, are acutely knowledgeable (John is involved in many conferences, research etc) and they will help you on 1:1 basis with advice to move things forward as well as who to ask for referral to if they think that will help you.

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  • Posted

    sounds very tough, my experience is that the the medications do take their toll. It is hard for you to feel no improvement despite sticking to what the drs say.

    I wonder if you have someone supporting you at your appointments? i think that it is difficult to take a full part in the drs discussions when you feel so ill. i have also found that the drs dont follow up very often leaving 6 months between appointments. Ask for a review and take someone with you who can help you along with notes of how you are . Keep a note of your major issues with details of how often you suffer as well as the severity. Give this to the dr.

    Have you spoken to someone at Vasculitis Uk , they have a help desk and are knowledgable .

    Hope this helps in some way.


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  • Posted

    thank you for your help. i have a vasculitis specialist and 3 other doctors i see regularly but it seems like they have no clue of what to do. also i've tried so many pain meds but nothing helps. I appreciate everyones help. thank you so much.

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    • Posted

      My only other thought is to ask to see a pain specialist as they may see things differently and have other advice.

      I also agree with the comment below regarding asking for another opinion. A strong doctor will welcome the support for you if they have run out of ideas. If they don't like it, that's really their problem and not yours.

      Personally, I would still phone the helpline to see if you have the best.

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  • Posted

    Hi, sympathise totally with you. I have Behcet's (a form of vasculitis or can involve vasculitis) I was very ill for quite some time. I am currently in remission and thank god haven't had any symptoms for a long time now. I was treated by a prof Jayne who is a vasculitis specialist based in Addenbrooke's in Cambridge. I had to change doctors before I got anywhere with treatment. Some docs are just better than others in this field I do believe. I am not sure what to say, such an individual disease with such different symptoms and treatments .But I would say change and get a second opinion if you're not feeling you are getting the right treatment. Take care

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