Any experience with vasculitis specialist in US?

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I've recently been diagnosed with urticarial vasculitis.  I live in Honolulu, Hawaii, where the population is small enough that less common diseases (like vasculitis) rarely occur within the State and therefore, local doctors may not be very familiar with such diseases.  I am contemplating travelling to the continental US to see a vasculitis specialist and am wondering if anyone has received treatment from:  1) the John Hopkins Vasculitis Center, 2) the UCSF Vasculitis Clinic, or 3) the Stanford Vasculitis Clinic.  If so, what has your experience been and do you have any tips?  Thanks!

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  • Posted

    Hi LMI,

    ?It's a rare enough diagnosis wherever you are, I think.  I'm in the UK, and nobody seems to know much about it here either.  My first treatment was with Dapsone, which was working well for the skin but killing me with depleting blood cells at the same time so I had to stop.  However, Dapsone is a really effective treatment for most people.  Failing that I tried Hydroxychloroquine, which has taken 5 months to begin to make some small effect (my condiion was severe) and if that doesn't do it, immunosupresants are the way forward.  Ciclosporin worked well, but my doctor took me off them after a couple of years because of skin cancer risk.  However, I'm thinking of going back on them if the hydroxychloroquine doesn't do it. 

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  • Posted

    Also, keeping cool is key, to reduce inflammation as much as possible.  Guess that might be tricky in Hawaii.  Menthol cooling creams are effective, as are strong steroid creams.  I spend my life shivering.

     

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    • Posted

      Thanks for the insight, clare88367!  I'm currently on cyclosporine and hoping it starts to kick in soon.  I try to keep cool too, which is somewhat difficult in Hawaii.  My AC is always set to 70 F, and for me, that's shivering temperature!  My docs are talking about trying to switch me to hydroxychloroquine at some point, but it is not strong enough at this point. Hopefully I can successfully switch over to a less sever drug sometime in the future.

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    • Posted

      Yes hydroxychloroquine is certainly a gentle drug and I've persevered with it even though the dermatologist and rheumatologist both said it wasn't working. I wanted to give it a fair trial as its lifelong treatment and the alternatives are so harsh. However, I'm still struggling with symptoms, so may have to give in and go back on the ciclosporin, which did clear all symptoms. Derm wants to put me on methotrexate, do you know anything about that one?

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  • Posted

    How are you doing on the ciclosporin?

     

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    • Posted

      Hi! I'm doing well on the cyclosplorine at the max dosage for my weight (200 mg per day).  I go back to the dermatologist next week and I'm hoping he'll start reducing the dosage.  Once the cyclosporine dosage starts reducing, my rheumatologist wants to try transition me to hydroxychloroquine.  Will see how that goes.  My doctors also brought up methotrexate several weeks ago.  If the cyclosporine didn't work, then they wanted to switch me to methotrexate (which I understand is a chemotherapy drug).  Luckily, the cyclosporine (along with 40 mg Zyrtec per day plus 40 mg Claritin per day) has worked, so for now, no methotrexate!  How are you doing?  Still on hydroxycholorquine?

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    • Posted

      I'm glad the ciclosporin is working for you - it must be such a relief!  Sadly for me, when I reduced the dose and stopped the symptoms flared, and the Derms aren't keen to supply it long term because of the cancer risk.  Dapsone is the drug of choice, I think, if you can tolerate it (I didn't).  Still on the hydroxychloroquine but frankly it's just not strong enough to control the symptoms and my skin from head to toe is in a very bad way, hence about to start on the methotrexate tomorrow, which I am rather nervous about. :-/

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