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Suggestions for treatment options please.

Posted , 4 users are following.

clare88367
clare88367

Feeling a little down about treatment options for my vasculitis.  Had ciclosporin for a few years which was totally fine, except my consultant said there was a long term cancer risk with it and wouldn't let me continue.  High dose steroids work short term, but obvs is not a long term option, especially as I've had gestational diabetes, so assuming the diabetes effect may be more likely.  Tried methotrexate but couldn't ultimately tolerate the side effects, even at a low dose.  

Anyone got some treatment suggestions? x

0 likes, 14 replies

14 Replies

  • michelle43915
    michelle43915 clare88367

    Posted

    Hi

    You di not say what type of Vasculitis you have? What country do you live in? Both would be helpful then can direct you to more options of meds and perhaps support groups. Please do not despair or get down there are a lot of drugs on the market for Vasculitis but depends on what type you have. One drug that seems to be given now to many vasculitis conditions is infusions of Ritixumab. Thus all depends on the type. Another old one is cyclophosomide. That long term may cause bladder cancer. Note i say may. I have had all the meds for my vasculitis. I have EPGA/CSS. I got so bad consultant decided to give me cyclophosomide bit had bladder check 1st. I had bladder cancer. Had op i sm ok. I recently had cyclophosomide as i have got real bad. I took the chance because my EPGA/CSSwould probably kill me before getying cancer. But there are more drugs. New steriod sparing drugs. One on the market for eos asthma and EPGA. More following. It depends on the type if vasculitis and what country you live on.

    But not all doom and gloom. Fight research and get support frim others with your condition. I have found support groups have saved my life with advice.

    • clare88367
      clare88367 michelle43915

      Posted

      Hi michelle, I'm in the UK and I have small vessel/cutaneous/hypersensitivity vasculitis.  I did ask my Derm about the anti-tnf treatments like rituximab and she snorted and said that was not going to happen.  Not sure where you are either, but it seems in the UK that the anti-tnfs, being so hideously expensive, are only available if you put a special case to the NHS finding body that controls such things.  Dapsone is the drug of choice for my condition but it compromised my bone marrow and put me in hospital for a while, though i was helping my symptoms.  I'm now looking at the possibility of azathioprine, do you know anyhting about this?

    • michelle43915
      michelle43915 clare88367

      Posted

      Hi Claire.

      I am in UK. I don't know your disease bit understand about the meds etc and how hard it is. I have that problem now. Steriods ate killing me after 12 years high dose there is a drug but only handful allowed per year allowed per year. Its fine i shall fight. Much cheaper for NHS if give me the drug but rather waste money me constantly ill etc.

      You should get 2nd opinion. I did thank gold or would not be here. Best place Vasculitis is Addenbrookes Cambridge a Professor David Jayne that is where i go. He knows all the drugs and thinks out if the box. I know lots of people who go there from all over. Worth a trip. If you do go make sure you see him 1st only. Your current consultant need not know anything about the 2nd opinion. Completely confidential. Its your life get 2nd opinion. Also help group and free helpline Vasculitis UK look it up. They are fantastic they have trained advosirs who have disease too. Helped me many years ago. Its a charity. They recommended Addembrookes to me. Its really good hospital too. Friendly caring staff.

    • clare88367
      clare88367 michelle43915

      Posted

      I will look him up.  I really do need a second opinion.  As much as I like my derm, we've known each other for about 6 years now, I don't feel confident about her opinion for several reasons, not least of which she was treating me for eczema for many years despite me telling her that was not the problem.  

  • paul38503
    paul38503 clare88367

    Posted

    Hi Clare,

    I am currently using mycophenolate 3,000 mg per day with 15 mg Prednisoline ( have reduced from 80 mg per day & hope to continue reducing to 10 mg per day ),

    Nexium & Zetlam. Tried Azotheoprine but couldn't tolerate the side effects.

    Cheers,

    Paul

    • clare88367
      clare88367 paul38503

      Posted

      Hi Paul, I've not heard of mycophenolate before.  Where are you in the world?  Wondering if it's available in the UK.  I'm looking at azathioprine now, having tried quite some, and feeling worried about the side effects.

  • brandi07352
    brandi07352 clare88367

    Posted

    My mom was recently diagnosed with mpa vasculities. Her kidneys were severely damaged and her lungs. Her treatment consist of prednisone ( which she is down to 2.5 mg). She was suppose to get iv cyclophosphamide. Her creatine insurance would not approve it so doc started her on imuran. She is doing very well on that med so far
    • clare88367
      clare88367 brandi07352

      Posted

      Hi Brandi, 

      Imuran is a brand name for azathioprine, isn't it?  Glad she's doing well on it, cos so many people have bad side effects.  I think the cyclophosphamide is only rolled out as a quick-fix-big-guns treatment for a short term blast, as far as I can see, rather than a long term one.  

    • paul38503
      paul38503 clare88367

      Posted

      Hi Clare,

      ?Mycophenolate comes in various names & generics.

      I am using CellCept.

      ?Azathioprine was succesful in controlling my chronic continuous urticarial vaculitis

      but I couldn't tollerate it.

      ?I am hyper sensitve / allergenic.

      ?If your Vasculitis is under control with your present medication I would stay

      with it as 2.5mg of prednisolne is good.

      ?I hope I can get down to that dosage. 

      ?I live near Sydney, Australia and visit an Immunologist for my treatment.

      ?I have talked to my doctor about Retuximab which is more expensive but from what I know

      ?there is a biosimilar version available in Europe whic is much cheaper. 

      Cheers,

      Paul

    • clare88367
      clare88367 paul38503

      Posted

      Yeah thing is the only drug that has controlled my symptoms with minimal side effects is the ciclosporin, Steroids control it only in high dose.  Dapsone nearly killed me. Hydroxychloroquine has minimal effect.  Methotrexate I couldn't tolerate long term.  My derm snorted with laughter when I suggested anti-tnfs, as it seems they are like unicorn dust in the UK. 

    • paul38503
      paul38503 clare88367

      Posted

      Hi again Clare,

      I've just realised Ciclosporin is Mycophenolate and CellCept.

      Cheers, Paul

  • paul38503
    paul38503 clare88367

    Posted

    Sorry Clarke, I'm getting confused. Mycopenolate is Cellcept. It is not ciclosporin. Cheers, Paul

    • clare88367
      clare88367 paul38503

      Posted

      Hah, so many drugs pass by people like us, it's easy to get confused!  Ciclosporin is an immunosuppressant commonly given to organ transplant patients.  They're pretty whopping horse pills.  Like everything, they have the potential for a range of side effects but when I took them I had nothing but lovely respite from my symptoms.  

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