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Thread: New here, but diagnosed in 1992, Rituxan, Dr. Langford

  1. #11
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    Elsawind, So sorry to hear about your story, sounds horrible. Where is he getting treated? Have you been to one of the main vasculitus centers? I am not familiar with Remicade, but others on this forum are much more knowledgeable about the medicines. Best of luck to you!

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    Hi Elsawind, nice to meet you. Your husband has sure had difficulties. I also wonder if he's being treated at a major vasculitis center. I can't imagine anyone else would have a clue about his treatment at this point.

    As far as infliximab (Remicade), I asked Dr Seo (JHU) about it this month. He said the anti-TNF alpha drugs are not looking good. They had a lot of hope that it'd be useful with severe refractory (ie unresponsive) Wegs. As they've done more research they're not seeing what they hoped for. Yet another reason why I suggest your husband consult at a major center. If Remicade truly is his only option, at least they will give you the statistics and not leave you in the dark wondering.

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    Hi aewaustin and Sangye thanks for your comments
    my husband went to the Cleveland Clinic, UCLA, Kaiser Sunset, Kaiser Harbor City. The reason we are trying infliximab is because the data suggest that infliximab may provide an effective and more specific therapeutic option in the treatment of active WG refractory to standard treatment. We know that it was tried only on a very small group of people, the studies i have is only 6 , one had infections, but the other 5 experience remissions, so we thought it was worth to try it. I have my dobts after reading your post. My husband's case is out f the book and the worse part is that is refractory to any treatment. Here in LA they want to try again with Rituximab but as you can understain we do not have much hope since it did not work before. At the moment he is on 50 mg of Prednisone per day. Last year he could go as low as 30mg but needs more and more as time goes by. Any chemical he takes lowes his blood count to the point of bone marrow failure, even antibiotics. On the positive side, he has an unbelievable determination to fight and has my support and the family. He has won many battles, he will lose the war but hopefully he will win a few more. It is very sad to see him deteriorate so much.

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    Elsawind, I agree that if infiximab is his only choice there's a chance for him to be one of the few that it helps. Why not, right?

    Just curious-- when he did rtx did they do 2 or 4 infusions in a month? Did he improve at all, and did they re-treat?

  5. #15
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    Sangye, in April 09 he had two infusions, in Nov 09 the doctor decided to do it in 4 infusions, and statrted with Methotraxate. No improvement, Prednisone at 60 mg most of the time, the Mtxe discontinue, lab tests too low. No way to start again with citoxan. By Oct. a biopsy done on something that we thought it was vasculitis and turned out to be a rare type of cancer, sebaceous carcinoma, it turned out to be very challenging the reconstruction and in order to not to interfere with the healing he only rely on Prednisone, but had that set back in Mex. where WG attacked on a very aggressive way. If you do not get grossed out take a look at https://picasaweb.google.com/elsawin...eat=directlink
    We communicated with Dr. Langford but she said that the doctors were doing what they were suppose to do, the problem is that his body does not respond to chemicals.
    There is no much hope here, I will continue with the beet juices, the Just Cranberry juice, the milk thistle, multivit. etc, to try to safeguard as much as I can his organs.

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    My gosh, what a terrible lesion he had! Is that skull bone exposed?? I had a very difficult time healing a huge vasculitic lesion on my leg a couple years ago. It reminds me of that. It took almost a year to close.

    I sure hope the new treatment works for him.

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    yes, it is bone that is exposed, we have to go on Thrusday to the plastic surgeon, I'm worry about that black spot on the bone, maybe necrosis. All his wounds take forever to heal. So far the organ involved the most is the skin. In 2007 a testicle was removed and the biopsy said,
    The findings in this case are most consistent with
    either Wegner’s granulomatosis or collagen vascular disease.
    I sure hope Infliximab works for him, otherwise if there is time we will try again RTX
    Good luck with your vasculitis!!! take care

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    That was a small lesion that turned out to be quite extensive. Wow, that looked like it hurt. When I was 15 I developed a lesion/blister on my forhead and it left a big scar. Is that how his started?

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    Yes started with a little actinic keratose that the dermatologist froze. By mid July it was bigger, the rheumatologist thought it was vasculitis, because he had many lessions specially on flair ups. We went to Greenland and Island for a couple of months and when we returned and went to the dermatologist it was really big, a biopsy was done and the results were sebaceous adenocarcinoma that it is an agressive and rare type of cancer. The doctor use a procedure called Mohs, you are sedated but it is a nighmare, four layers were removed and part of the bone was scraped. Very aggressive!! After so many months he still have some bone exposure. We will see what the ENT says on Thrusday. The plastic surgeon did not wanted to do a graft if it was not absolutely necessary, did not want it to have a double problem. Eventually it will close but it is taking forever!!!

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    Healing will take longer with all the medicines that he is on. Yes it will heal in time. Keep us updated. Good luck Thrusday!

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