Idiopathic Leukocytoclastic Vaskulitis: therapy resistent, what to do?

no, I do not have joint problems or abdominal pains. I have cutaneous pain only (flares). 

Cheers,

Alex

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

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

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

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

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.

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.

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.

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.

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... 

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

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.

Thank you for your message and all the good info.

I appreciate it very much.

Cheers,

Paul

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       

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