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Thread: Desperately seeking med ideas.

  1. #11
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    Quote Originally Posted by dboyer View Post
    Lauren Ny name is Darrell Boyer and I have had weggy for 7 years. It attacked my lungs but my remotogist pulled my out and I to have taken all the drugs you have mentioned. I got off prednisone about 1 year ago. I took it for 5 years. My problem is skin infections and hard to heal even antibiotics. Does any of this sound familer? I am A senior and struggle with this format my email is dboyer77380 at hotmail.com Thanks

    VW: Altered e-m address to save Darrell from the search engines....
    Hi Darrell, not sure your post here can get enough attention with your question about the skin problems. I dont have any so cant help with that. Try to post a new thread: go to the forum page. On the third bar, under "Wegener's talk" press on "general wg chat". On the top you will see : post new thread. Press it. Give a title with your question and write it down. Good luck!
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  2. #12
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    Quote Originally Posted by crowneagle View Post
    Alysia Weggie suggested that I post my questions here. So, here is my situation. I've got an untenable situation where every drug they try me on progresses my disease, rather than arrest it. My doctors are at their wits end. Cellcept was the worst but even Rituxan has had it bad side effects. I've also have LCV as a skin manifestation of Wegener's. So, they tried me on Colchicine but that turned out almost as bad as the Cellcept. The only drug they are offering is Imuran but it scares me to death that it will be like the others. Cytoxan is the only drug that put me in a short remission. But, you know the long term risks of that.

    Has anybody ever used Arava or Gusperimus(DSG)? These are two drugs the doctors haven't mentioned to me. Has anybody ever had a drug make their disease worse?
    Sounds like you've had a rough go with this lovely little disease. Have they attempted plasmapheresis? I know this is big go, but it's not drug related, so it might affect you differently, and get the ball rolling on the healing process. How long were you on Cytoxin? I was on it (oral - with lots of water to keep the kidneys and bladder safe of course) for a year, and it was certainly what nixed my initial onset. Rituxin has worked for me, I've had it three times (two infusions each time) but it does take a little while to kick in and do it's magic, and there is potential for lots of negative side effects, but that's where the risk-benefit assessment lives, and must be discussed with your doctor (who I hope is a vasculitis pro, otherwise they tend to grasp at straws using us as their guinea pigs.) Your B-cells are gone within a week with RTX, but the symptoms don't disappear that fast. It takes a month or two to start to feel the benefit. As for Imuran, I have been on it for years, and much prefer it to methotrexate. I have absolutely no side effects from it. Not one. The only issue is if you are missing the enzyme necessary to metabolize it. A small percentage of people don't have it. There is a blood test to check that out, not where I live though, so the first couple of weeks were anxious for me hoping that this one will work. I think the trick is to knock the disease off course with the big guns (CTX or RTX or worst case scenario plasmapheresis) then do the maintenance with the milder immune suppressants. I think weaning off the steroids too aggressively can also trigger a flare, so that's an element that has to be followed cautiously and slowly to avoid a flare. From what I've read, it is harder to control the disease with each subsequent flare, so keeping them to a minimum is very important.

  3. #13
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    Thanks Marta. Sorry it took so long to get back to you. The plasma exchange is out for me for the time being because I was told they wouldn't do it, unless I was in desperate shape. I've had very bad reactions to most of the drugs they tried on me with Cellcept and Cholchicine even advancing my disease. That's my primary dilemma. They told me at the vascultis center in Boston that I'm running out of options. Imuran is the last drug to try but I've been holding off just to see what my second round of RTX would do. Then, there is my fear that Imuran will treat me badly like the other drugs did. I am going to talk to my doctor about another round of CTX.

  4. #14
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    Quote Originally Posted by crowneagle View Post
    Thanks Marta. Sorry it took so long to get back to you. The plasma exchange is out for me for the time being because I was told they wouldn't do it, unless I was in desperate shape. I've had very bad reactions to most of the drugs they tried on me with Cellcept and Cholchicine even advancing my disease. That's my primary dilemma. They told me at the vascultis center in Boston that I'm running out of options. Imuran is the last drug to try but I've been holding off just to see what my second round of RTX would do. Then, there is my fear that Imuran will treat me badly like the other drugs did. I am going to talk to my doctor about another round of CTX.

    Man that's just messed up on the plasma exchange. So they have something that will knock this back but won't do it until you're too sick. There's gotta be a good reason they hold this one back. I wonder if there is a high risk of something bad happening.

    My dad reacted very poorly to Cellcept as well as a few other people I know that have other autoimmune diseases. I have heard very few stories with it being successful. Maybe that's the bugger, Cellcept.

    Imuran worked great for me, and on my second last RTX infusion (2012) I was taking it while and continuously after the actual infusion dates. My gut feeling is you might have to hit this hard, since not only is it not responding but is getting worse. Imuran alone though is only maintenance, I don't think it has the ability to knock down a full blown flare. There are only the two options for a full blown flare - the big guns - RTX and CTX. I think you should ask your docs if they might consider RTX and Imuran simultaneously and then stay on the Imuran as maintenance (assuming you can metabolize it, the majority of the population can.) I don't know if you want to be doubling up on the RTX and CTX either, to me that seems more last ditch effort than plasma exchange. Keep in mind that once you have an RTX treatment, you have ablated most of your B-cells. It takes 6-8 months for your body to build a new B-cell army, so that's how long you're compromised from the treatment. I think combining RTX and CTX could potentially really mess up your ability to fight off any little thing, and that might be a whole different scary thing you'll have to worry about.

    My disclaimer though: I have no idea. I'm just typing instinctual hypothesis based on my own experience, so take everything I say with a grain of salt, cuz my body is different than yours, and they deal with treatment differently and manifest the disease differently. My musing is just points to consider and trash if needed.

    Peace,
    m

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