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Thread: Cytoxan

  1. #151
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    Quote Originally Posted by drz View Post
    I have a friend going to Mayo inAZ and he is remission now from WG. I don't know if his physician bothers to register as a vaculitis expert but i would certainly guess the Mayo there has people experienced in treating vasculitis and they should have consultation available from their Rochester clinic too if needed. The large University hospital usually have good medical facilitiees where they are likely to treat esoteric disease like WG too.
    Thanks drz. Do you know if your friend's physician is Dr. Mehrdad Mazlumzadeh? This is the doctor that treated Sangye when she lived in AZ. Scottsdale Mayo is not on the VF's list, and my hope is to consult with a Wegs specialist at one of the centers on the list; however, it is definitely closer to me than those listed. Which brings to mind, University of Utah clinical center - has anyone or is anyone currently being treated by a Wegs specialist at this location?

  2. #152
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    Quote Originally Posted by janNaz View Post
    Thanks drz. Do you know if your friend's physician is Dr. Mehrdad Mazlumzadeh? This is the doctor that treated Sangye when she lived in AZ. Scottsdale Mayo is not on the VF's list, and my hope is to consult with a Wegs specialist at one of the centers on the list; however, it is definitely closer to me than those listed. Which brings to mind, University of Utah clinical center - has anyone or is anyone currently being treated by a Wegs specialist at this location?
    I can ask him next time I talk with him by phone.

  3. #153
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    JanNAz-- I'm also very upset at your rheumy for not explaining all that about ctx. It's her job! Even my first lousy rheumy really explained it well. He was one of the worst docs you could imagine, but he got that and a couple other things right at least!

  4. #154
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    Quote Originally Posted by Sangye View Post
    Aww, Lisa Marie. I'm so sorry they're putting you through this. I never took IV ctx. Is the bone pain normal?
    ok I am getting ready to start my phone call regiem for the insurance companies and the state commissioner and my doc....I did find out that joint pain is common but it did not specifi at the injection site ...it is much better today....nausea has decreased no emesis since early this am ...so I put on some make up and gonna fake like i feel great....to improve my attitdue so maybe I will not loose it today with the insurance company and anyone else...wish me luck....I started prenatal vits yesterday maybe it'll put a pep in my step.....keep ya all updated...thanks again for listen....uh oh I just notice I am out of milk duds.....darn it .....maybe a piece of jerky will work if my jaw can stand it...lolol....

  5. #155
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    LisaMarie keep trucking along. You will get that cytoxan strong girl. Mild duds for everyone, except Sangye.

  6. #156
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    I hope it went well, Lisa Marie. Glad you're feeling better today.

    And hey, knock yourselves out with your little Milk Duds.

  7. #157
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    Quote Originally Posted by Sean48 View Post
    Hi I started my cytoxan yesterday and have a couple of questions. As of now I have no issues other than weakness and tiredness. Everything prior to diagnosis is gone. I am wondering if once the cytoxan kicks in if anyone continues to have no side effects, or is inevidable? I know everyone is different but I hope to hear from someone who is doing ok on it. I am taking 60mg of pred and 150 mg of cytoxan (3 times a day). Also another question, is there a minimal amout of water we should be drinking? I forgot to ask my doctor. She said plenty of water......Health wise they say 64oz but thats for normal water intake. Thanks..
    Hi, I've been on cytoxan for too long. I am currently on only 25 mg per day. Dr wants to try me on alternative in September. 8mg of pred. I am doing very, very well as far as general welbeing and strength. I have always had a habit of drinking lots of water, I also never have coffee, and very very limited alcohol. Some tea. I do think this helps me to tolerate the meds. I always take them with food, rarely processed and never salty. I am soooo keen to get of more meds, but tend to flare going down. So far so good this time. Germaine

  8. #158
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    What is the alternative drug your doc is considering? I can't believe s/he would keep you on 25 mg ctx. It isn't a high enough dose to control the Wegs, but it's enough to use up your lifetime ctx supply and put you at high risk for cancer. So, little benefit and high risk. Not good.

  9. #159
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    That does sound quite odd being at 25mg of ctx.

  10. #160
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    Thanks Dee......Good to hear. I have been doing ok so far so thats a good thing. The only thing with me is I get floppy (as I call it). Today I am going to a graduation party and it is going to be 91 and very humid. I will play it by ear how long we stay. Its outside but I can always go in the house to relax where its air conditioned. I do still have my oxygen tank so wonder if I should bring it with me. They will be having fans in the garage (3 car alll cleaned out) so i will bring my recliner deck chair. Any comments?
    Thanks

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