Idiopathic Leukocytoclastic Vaskulitis: therapy resistent, what to do?

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Hello, I am a 34 year old woman and have been suffering from Cutaneous small-vessel vasculitis (also known as "Cutaneous leukocytoclastic angiitis", "Cutaneous leukocytoclastic vasculitis", "Cutaneous necrotizing venulitis" and "Hypersensitivity angiitis" ) for 2 years but was only diagnosed last year (after biopsy, blood tests...). I have been taking corticoid (Prednisolon) and immunsuppressive (azathioprin) for several months but I do not see any change except that I put on a lot of weight and that I start suffering from side effects of the azathioprin (bad urin analyses). I have had burning red skin rushes on feet, ankles, legs, back, lower belly and arms every second night for the the past 6 months. I try to relieve the pain by cooling my body off with cold wet linens or ice. Alcohol, exercice make it worse. I do not take contraceptive pill.

I am looking for experience sharing, and a positive way out smile Some reported that Azathioprin was very effective. It is not for me. Are you also resistent to such therapy? What else could be more effective? Would there be any non-conventional therapy that proved to work? For intance, I have been reading a lot on links between gut bacteria and Idiopathic Leukocytoclastic Vaskulitis. Diet could be curing (non-dairy product/gluten free). Have you tried? 

Thank you for your answers

PS: I live in Germany and it is difficult to find english speaking groups or information.

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  • Posted

    Hello Alex,

    What is your dosage of prednisone ?

    I am on 75 mg a day and this high dosage controls my Urticaria Vasculitis.

    Finding the right drug to replace or help reduce my predisone dosage is a fishing execise related to effectiveness and tollerance af the introduced drug.

    I tried Plaquinel and had a very bad allergic reaction yet other patients have reported some success.

    Riruximab is currently achieving some succes.

    I recommend you visit the USA Vasculitis web site

    http://www.vasculitisfoundation.org/

    scroll down to VIDEOS and view as many videos as possible.

    Cheers,

    Paul

     

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    • Posted

      Hello Paul,

      thank you for your reply and your recommendation.

      Back in September I took 75 mg of prednisone a day. I reduced the dose slowly when I introduced 2x75 mg of aziathioprin (immunosuppressive) a day. I am now at 15 mg of prednisone a day and 2x75mg of aziathioprin. The current low dose of prednisone could explain why the flares are coming back every other day.

      How long have you been taking 75mg a day? Don't you have negative effects? My blood sugar has increased and my renal function decreased. I would rather not have to go back to 75mg of prednisone a day...

      I have seen posts where patients take a combination of prednisone and anti malaria meds. I have not tried yet. However I know that I took malarone 20 years ago and like you I had a very bad reaction.

      I have another appointment tomorrow at a rheuma clinic in Germany. I will ask about riruximab.

      thank you for your support!

      cheers

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    • Posted

      Hello Alex,

      Sorry I mispelt Rituximab.

      I have  been on a high dose of prednisone for years.

      I used to take 80 mg for 8 days and the reduce to zero under

      the Dermatology Associates of Wisconsin 12 day Prednisone taper course.

      Then I would go as long as possible ( usually 3 weeks)  before repeating this schedule.

      This all changed last year with the allergic reaction to Plaquinel and now I'm on 60 mg a day having reduced down from 80 mg.

      I have chronic continuous Urticarial Vasculitis.

      I am finally changing from Gps and Dermatologists to the Vasculitis section at the department of Immunology in a Sydney, Australia hospital.and have an appointment in mid March,,,next month.

      Yes, if you had a reaction to malarone, I agree stay away from Plaquinel.

      Yes, I do have huge side effects from Prednisone but it's better than suffering the nightmarish UV.

      Good luck with your next appointment.

      Cheers,

      Paul

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    • Posted

      Hi Paul,

      The latest appointment with the rheumatologist went ok I guess. Some of the outcomes were negative, so for my mental it was not that good. The doc confirmed that I am resistent to the immunsuppressive Azathioprine although he had good results on other patients. He wants to try a combination of two immusuppressives: Azathioprine and Ciclosporin. I will start that new treatment in 2 weeks. I asked about the other long term treatments (see my other post from today "interesting read on LV" ) such as the colchine and hydroxychloroquine. He explained they would not be working on me since my condition is severe and uncontrollable since last september. Hence the Cat. 2 therapy. The bad news is that if the combination of Azathioprine and Ciclosporin does not have any effect on me, the other long-term options - other immunsuppressive of the Category 2 treatments, and Category 3 (rituximab) - are not compatible with pregnancy. Now that I am aware of that I will reflect longer on my options as I am 34 and wish to have children.

      Cheers,

      Alex

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  • Posted

    Hi, I have Leukocytoclastic Vasculitis that has been controlled with Cellcept and Plaquenil since 2006.  My Dr took me off of Cellcept for a year but then it flared up again so now I'm back on both.  I don't know about food causes but suspect there is some connection there.  Mine is definitely worse when stressed.

    Dyan

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    • Posted

      Hi Dyan,

      thank you for sharing the treatment that is effective on you. I understand that you have been taking it for over 10 years. What are the side effects? What can you not do or take with your treatment?

      My condition is also worse when stressed, standing, doing sport, drinking alcohol, taking hot showers or baths. 

      I am a on dairy/wheat free diet. I will report here if my condition improves.

      cheers, Alex

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    • Posted

      Hello Alex,

      The only thing that is helping me is Accupuncture and Chinese herbal medicines that improve my circulation. After 6 months of doctors and high doses of medications, my condition only worsened. Within 2 weeks of starting Accupuncture and herbal medications the lesions stopped. I am now in recovery and having Accupuncture twice a week and continuing the natural medications.

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    • Posted

      Hi Pace,

      Thank you very much for your comment. I am glad to read that alternative medicine can help! In April in addition to conventional medicine I started homeopathy. With the homeopathe we are trying one after the other the means that should work best on me. It is a long process with fine tuning but I am optimistic.

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    • Posted

      You mentioned "My condition is also worse when stressed, standing, doing sport, drinking alcohol, taking hot showers or baths."

      Have you tried cold showers and baths with a touch of bleach, say 1/4 cup of bleach per bath tub? Public swimming pools would be an alternative to baths, because they are cold and contain bleach, and they cover entire body.

      Vasculitis can affect the calf, which is why you will feel pain while standing. You may want to consider Calf Compression Sleeves available on Amazon in the US for $8 a paid (or more), there is a seller on ebay selling two paid (4 sleeves) for $5. I went with Amazon because of the reviews.

      Vasculitis can also get worst with heat and exercise, which is why you want to wear light clothing and minimize exercise. I am trying the cloth baths and it works great, but my doctor then put me on methotrexate for CTCL and I am waiting to see whether it will all clear.  If it clears up then it is vasculitis from allergic drug reaction or bacteria / virus that eventually led to cancer, and by removing the antigen and reversing vasculitis, which methotrexate treats, you reduce inflammation and chance of getting cancer. You do want to take care of it.

      If you are taking any drug that can cause vascularization, you may want to remove it. It can take years for the reaction to go away.

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    • Posted

      Pardon the typos. Calf Compression Sleeves come in pairs (not "paid" ), but some ebay sellers sell them in each so you want to watch for it. I was diagnosed with vasculitis - drug reaction, prior to Cutaneous T-Cell Lymphoma diagnosis, and I know I was reacting to a medication which vasculitis one of the side effects. As an active sportsman, my activities were making me worst.

      Re diet, if it affects your digestive system you would want to limit acid foods such as tomatoes, pineapple and such. Adding acid to an inflamed digestive system (via food) or adding acid to skin (via vinegar, etc) could make things worst.

      Vasculitis can also affects your bones. I found cold baths with a touch of bleach to greatly help, and I proved it while going off chemo that I was getting substantially better, even though it is practically unheard of for this cancer.

      I hope you take care of it. Long-term inflammation can lead to cancer. You want to do everything to reduce the triggers, and take meds as necessary. I stayed clear of steroids, they haven't helped much and has long-term consequences. Like you I am young, and have to consider long-term side-effects of treatments.

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  • Posted

    Have you tried dapsone?  I share your problem and had good results with dapsone, only my body very rarely didn't agree with the drug. 

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    • Posted

      No, I have not. I have asked the doctors about it at the Immunology clinic where I am being treated. They said that my condition is too serious and the flares too spread out to take dapsone. That's how I started straight with 75 mg of the immunosuppressant Azathioprine... 

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    • Posted

      Hi Clare,

      I am curious about Dapsone.

      What other drugs have you tried before Dapsone ?

      Do you or your doctor agree with Alex's doctors opinion that in the case of a very serious

      condition ( UV ) dapsone would not be strong enough ?

      Cheers,

      Paul

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    • Posted

      Hi Paul,

      Capstone worked very well for my skin, which was totally covered in lesions from head to foot, within two weeks it was controlling symptoms, but it was also compromising my bone marrow and put me in hospital. Before that I had been on ciclosporin for a couple of years, which worked fine to suppress my stupid body, but the Dermatologist wouldn't let me take it long term because of the cancer risk. High dose prednisolone also helped, tho less as time went on, but was only crisis management. Prior to that I tried all sorts of topical meds which did nothing. Currently on methotrexate which controls symptoms, but I'm watching my white cell count drop week after week so I think will have to stop.

      Given free choice out of all I've tried I would have liked the dapsone. It worked to control very severe symptoms and carried few side effects and was viable long term.

      Best wishes,

      Clare.

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    • Posted

      hi paul

      ?my name is  wayne and I'm new to this site but after reading your post I have concerns about I am a suffer of vasculitis small and medium cell  ive been on steroids  for about 6 mths then I got changed over to dapsone by the consultant and within 2 wks I had an reaction to this drug that put me on a stroke ward for a wk the drug made me uv hypersensitive so I can only say approach with caution   wayne       

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    • Posted

      Hi Wayne,

      Thank you for letting me know about your reaction to Dapsone.

      ?I am currently being introduced to Mycophenolate ( CellCept) after experiencing an adverse reaction to Azatheoprine.

      I am optimistic that CellCept will replace Prednisolne and I will have improved health without Urticarial Vasculitus.

      ?I'll get back to you around Xmas time and let you know about my progress.

      Cheers,

      ?Paul

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