Help, a friend suffers from rare form of vasculitis (not sure of type sorry) and giving up hope!!!

[biddo20]

My friend is 37 and has been receiving chemotherapy for his condition but recently been told that treatment is not working and that he is basically dying. I am sure that more can be done but we are just told that not enough is known about condition and only oral medication is now being considered. He has blood and protein in his urine and kidneys are leaking. He cant have operations or dialysis because his immune system is non existant and not strong enough to undergo surgery. He is weak and aching regularly and we could do with some support. Has anybody got any advice or been in a similar position? He has a wife and young family we are very concerned about. Please help?? Thank you!

[mickt]

Hi biddo ,sorry to hear about your friends awful plight.Has he been seen by a rheumatologist yet I presume if hes had chemo he will have been.Surely the hospital he ids under and health proffesionals can help.To be told hes dying is a bit strong.If they have offered him oral medication they must think an improvement is possible surely.There are wiser heads than me on this forum and im sure you will get the help and advice of as many people that can give it.I hope things improve for your friend and his family.All the best to you all.

[biddo20 in reply to mickt]

Hi mickt, thanks for your reply, I do think he has been seen by a rheumatologist, and I have just heard that the medication they are trying is Azathioprine (no idea if this is good or what its likely to achieve)? But all things considered I am still hopeful that more can/should be done? Any information we receive will be of benefit - Thanks again!!

[mickt in reply to biddo20]

Ive just started azathioprine its an immunosuppressant drug or a steroid sparing drug.It dampens down your immune system to stop it attacking us.Keyes gives you some excellent advice.The second opinion idea certainly worth following as is all of the advice given by Keyes.

[Hidden]

Hi biddo20,

So sorry to hear about your friend.

There are some practical things that you can do, apologies if you have tried them already.

Is your friend being treated in a specialist multi disciplinary vasculitis unit? If not why not, ask for a transfer/second opinion.

Vasculitis UK have a helpline, their phone no. is 0300 365 0075 or e mail [e-mail]. It would be helpful to get as much info as you can regarding type of vasculitis, treatments tried etc before you phone.

Your friend may be reluctant to make a fuss and challenge his medical team, when you are feeling unwell it is difficult to challenge people. What I would say is my experience has been that no one will care as much about your health as you do, sometimes you have to ask lots of awkward questions and really push to get things done.

I hope that someway can be found to help your friend.

Best wishes

Keyes

[John_Mills Volunteer]

I think that, as Keyes has said above, it is essential that your friend is treated at a multi-disciplinary clinic with lots of experience of treating vasculitis - as a matter of great urgence. Please send me a private message on HU or by email as above. Azathioprine is maintenance treatment, not suitable for controlling the disease. Please tell me where your friend is being treated. John

[biddo20]

Thank you to all your responses, I have some information to be going on with and will certainly be doing some investigating.

Appreciate it!!

[cedric]

i have a rare form of vasulitas mine is cryoglobulinemia have been on severler tablets am on mycophenclane mofetil at moment only started these Monday tell your friend not to give up