need support for vasculitis

I have just been diagnosed with Large Vessel Vasculitis. Been advised to take Prednisolone, but can't take this drug as 1 year ago i was prescribed it for Polmyalgia. The effects have been devastating to say the least, these include;; no taste buds, hair coming out, large stomach, 5 fractures to my back, with excruciating pain, muscle aches and pain,, lost 4ins in height, gone down to 8stone 13, from 10stone. Looking for an alternative drug or a natural cure which i would prefer. Only symptons i have now are aching muscles in my arms and legs. Would appreciate any feed back or advise in this matter. Thanks and best regards.

3 Replies

  • Hi,

    Unfortunately Prednislone is the mainstay of treatment for Large Vessel Vasculitis. To discuss alternatives it's probably important to see the most expert Consultant you can. Where in the UK do you stay and we can point you in the right direction. There are no " natural " cures unfortunately.

  • To add to Keyes post - what sort of LVV? If it is GCA then you have little choice really as it is the only drug that is reliable enough to avoid the risk of loss of vision which, if it happens, will be permanent. If you have a history of PMR that would seem to be the most likely option - they are linked with PMR being one of the symptoms of GCA.

    The results of clinical trials with toxcilizumab are looking good (only smallscale trials are available yet, the big one will be published later this year) - but as far as I know they only used it alongside pred to induce remission faster, ethically the pred must be used until it can be shown that TCZ without pred would work reliably.

  • Wow,nth is is a difficult spot to be in and I am so sorry to hear it. I too have gone down that road, fractures and all. My doctor imidiately reduces my steroid level as soon as possible and put me on IV treatments of Rituxan (Rituxamab). This was switched from Actemra that was dealing with the RA & Lupus but I was told Rituxan also targets the Vasculitis.

    I am now off all steroids and doing excellent. I have no idea how long I will get Rituxan treatments but I honestly don't care, all diseases are under control. A small price to pay.

    Good luck!

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