Vasculitis UK

Not yet fully diagnosed and want to make sure i ask the right questions to my consultant

Hello

After 3 years or random flares of rashes on my limbs sometimes associated with joint pains and or chest infections i feel im getting somewhere. The chest consultant has ruled there are no issues with my lungs, the dermatologist has ruled there are no major skin issues but confirmed exercise induced vsdcullitis and i now wear support socks for walks. I am seeing a nephrologist regarding results of a kidney biopsey next week. Is there anything i should be asking? Im 35 and active but the flares can floor me. I am currently on no medication except for paracetomol for the pain and i have codine for the bad pain - which hasnt happened in over 6 months at this point. I am worried and just want to make best use of the meeting as its been over a year of tests at this point and not too much practical for me to do to make it bettrr. Although in some ways i am grateful nothing major has been found as well. Any help or direction would be much appreciated!!

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Something major HAS been found - a diagnosis (or at least a suspected diagnosis) of vasculitis but you are not being treated for it. This is serious, because vasculitis can cause major organ damage at any time.

When you see the nephrologist for the results of your kidney biopsy I suggest you ask -

1. Is there evidence of reduced kidney function? If yes, what stage is the damage and what is the prognosis for having to go onto dialysis.

2. Whatever the answers to 1, ask if there is evidence of vasculitis.

3. If yes, ask what treatment is proposed. From my experience - and from my reading of other reports on this website - I would expect an immediate start (i.e. within days) on cyclphosphamide or rituximab (your choice - he should explain the benefits and drawbacks of each) plus prednisolone (a steroid). The purpose of these is (in lay terms) to hit the vasculitis hard and force it into remission. This immediate treatment should take several weeks. After that there should be continued medication and periodic blood and urine tests to check that the remission is being sustained and the consultant should be able to give you an indication of what this treatment is likely to be.

4. If the answer to 2 is that there is no vasculitis, make clear that in light of the dermatologist's report that there is vasculitis you would like a second opinion.

5. Whatever the answers to 2, ask the consultant if he is experienced in the diagnosis and treatment of vasculitis. It's no criticism if he isn't - it's a rare disease and it cannot be expected that all nephrologists have this experience.

6. Forewarned is forearmed so, before you see the nephrologist, contact the Helpline run by the experienced volunteers who run this website, tell them your problem and where you live (I assume you are in the UK) and ask for details of your nearest experienced vasculitis specialist. You can also ask them if the approach I have suggested is correct and if they have any more advice. Helpline details are at vasculitis.org.uk/helpline

Hope this helps, and good luck.

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Thanks Jgold I will take all your advice. I am in the UK and will call the helpline today if I can. The dermatologist said that Exercise Induced Vasculitis only results in a skin rash and is nothing to worry about? Should I have challenged that? I spoke to a friend over the weekend as well who had undiagnosed Lymes Diese for 7 years and she also encouraged me to ask for a second opinion. After her treatment, she is now 100% healthy but was practically bed bound from her teens to mid-twenties. Does Vasculitis ever get mixed with Lymes disease I wonder? So many of the systems we discussed seemed similar. I will ask the helpline!

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Yes, please do call the Helpline. I can't answer any of these additional questions, but I'd be very chary of being told that any form of vasculitis is "nothing to worry about."

I'm sure the Helpline will either have answers or will point you to someone who does.

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