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Thread: Diagnosed a year and a half ago

  1. #11
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    Hi Joy, I live in SC and thought about going to Duke myself, but chose to go to Cleveland Clinic to a well known Wegeners specialist. I think going to a larger center and see a Rheumatologist that sees 100's of wegeners patients is so important.
    I had this disease since I was 12 years old and I am 45. She will survive as long as she sees a good doctor and takes her medicines and stays on top of her symptoms and reports any weird symptoms to her doctors.
    With regards to her fertility, I wegeners specialist can guide her.

  2. #12
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    Hi, Joy --

    I was diagnosed way after I had my kids; I'm in my mid-40s. I know there's at least one member who had kids post-ctx, but I believe that the rule with male patients is assumed loss of fertility and sperm banking (I met several people at the last vasculitis symposium who had been though this) - I'm not sure what the deal is with women.

    The closest center to you (maybe??) is UNC -- there they have excellent rheumys and other team members who work with WG and vasculitis almost exclusively. With both long involvement and looking at fertility preservation, I would want the most experienced team on my case.

  3. #13
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    I so appreciate your input-she will be seeing Dr. Nancy Allen @ Duke. I originally contacted JH, Mayo, & CC but could not get her in until after the new yr. I could not get her in @ Duke either b/c Dr. Allen was not taking new patients. Luckily we had a personal e-mail address from a contact, my daughter emailed her & Dr. Allen worked her in. I so agree that the above clinics would be wonderful but wanted to get her w/ an expert as early as possible & this was the fastest. We continually 2nd guess our choices...she is doing so much better but am worried abt the lapse in treatment, the pulm believed she needed to heal due to the horrible inflammation of her lungs & the lung biopsy. We have not heard oral cy is better-we heard the IV cy was less damaging to the body. She is meeting w/ an oncologist next wk. b/f Duke to dicuss & set up appts. We were unaware abt. the cost diff. of rtx & cytoxan-all these meds & new names reeled off your tongues are overwhelming, I had not even heard of cellcept from her drs. She has ins. through her school & do not yet know where all that works out. Thanks so much for this forum & your quick responses & help....Joy

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    Joy, I'm sure Dr Allen will explain this, but oral ctx has been shown to be more effective than IV. Also, it's easier to control the dosing in the daily oral form. Ctx is overly toxic to me and was causing bone marrow failure, even at a subtherapeutic dose. I was able to stop it immediately and my bone marrow recovered. If I'd had the IV dose, I might have been in seriously bad shape, as there's no way to remove it from your body once it's gone in. There are times when oral dosing is not possible (eg small children), but this is not very common.

    Yeah, BIG difference between ctx and rtx! A round (4 IV infusions) of rtx will cost a whopping $40,000 (cost of the drug + infusion clinic costs).
    Last edited by Sangye; 12-05-2010 at 09:38 AM.

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    It is also easily possible, Joy, to find out whether her insurance will cover rtx. I made that call immediately after dx, to know "just in case" the mtx didn't work out for me.

    Luckily enough for my insurer, my drug is quite cheap!

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    Hi Joy,
    I am so sorry to hear about your daughters experiences with this awful disease. My journey has been a tough one but also a lucky one, and I can give you advice based on what I went through. I was treated with 60 mg of prednisone when I was right out of the hospital. I was also given cytoxan by infusion rather than pill form. My doctors decided that this would be the best for me, given that I still wanted to have children. I was also given lupron a few days before each infusion (I had 5) to help protect my ovaries and put them into "sleeping mode". I remember how I felt the first day in the hospital when the doctor came in and told me that cytoxan would probably make me infertile. On top of everything else I was going through, it was crushing. He told me a few days later that there was a way to treat me that he thought would give me a chance of still having children. We were so happy about this. I was treated with cytoxan over the course of three months. During those 3 months I didn't work. My hair partially fell out and I blew up because of the high dose steroids. I was really anxious on the steroids and would wake up some mornings shaking. After I finished with the cytoxan, I was put on methotrexate. I felt very good on this drug and I started to taper off the steroids. I am currently taking small doses of methotrexate and prednisone. The only problem I have been having since a year and a half ago when I was diagnosed, is with my sinuses. They are often blocked and I often get sinus infections. I am going to see an ENT so hopefully he will help me with this. I try to stay positive but I definitely have my rough days. Whenever I get sick, I get worried that it is the wegeners returning. So far, it hasn't been but I am monitored very carefully. I hope my story helps your daughter. Please realize that this is a very hard time but she will get through it as long as she gets treated with one of the either cytoxan or rtx as soon as possible. These drugs are very powerful and will make her begin to feel better soon. Please let me know if I can help in any other way. I wish her and your family the best.

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    Joy, let us know if they want to do ritux. We can tell you how to get the insurance to approve it.

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    Default Thankyou!

    Mel, It was so good to hear from you! Your situation sounds very similar to my daughter. Your protocol is what the pulm. told her - IV CTx w/ pred. then MTX w/ pred tapering ,( the lupron was an interesting addition we need to ask abt.) only the timeline is longer than what we were imagining. I think we only heard what we wanted to hear, all the shortest timelines.... Like you, my daughter has a very positive attitude. She is still naive concerning the reality of living w/ this disease. That is why I have not told her yet abt. this forum, I worry it will knock her for a loop as it did me. The info I have gathered from everyone has beeen invaluable, the more I learn the more questions I have. I hope it is not wrong to keep her in the dark for now but a little at a time to face as she grows into the full realizations is where we are now. She met w/ the oncologist yesterday who has now rec. the oral over the IV CTX. due to doseage control. I know some of you were concerned abt. the initial plan for the IV for that very reason. The Rheum. @ Duke has emailed her abt. the RTX as a strong poss. The onc. yesterday also supports that as a poss. What are RTX side effects? The onc. talked abt. all the things it did not do - is the only neg. that it has not been studied as long? We are totally confused....the info I have gathered here helped me write up questions she asked along w/ hers yesterday. We see the Rheum. in 2 wks. so she will be only on steroids(60mg) until then. This concerns me....she is to ck. w/ her ins. co. today abt the RTX. So, Sangye I would greatly appreciate any suggestions on that front-her fertility issues are a main concern of hers at this time. W/ that in mind she is very interested in RTX. Thanks to all of you & your help, support, knowledge. Mel I wish you continued sucess w/ your treatment- thankyou so much!!! Joy

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    Your take is very interesting, and I will only add this about your daughter and the forum. When I was first diagnosed and found this forum (keep in mind I'm 45), I had friends ask me whether I thought it was "good for my mental health" to hang out on line with a bunch of people who were sick and saw the worst of this disease. Some people thought that it would "interfere with the positive mental attitude" that I needed to "fight and win my battle against WG."

    Later, I had friends even say that maybe I shouldn't tell people (this was funny because it was in the context of one telling me that people around were asking her if I was ill -- I had been shedding weight -- and her assuring me that she wouldn't reveal my secret.") Even later, I had people strongly advise me against going to the Vasculitis Symposium (held about 7 months after my dx) because it would be too stressful.

    It may be that your daughter is the kind of person who would not communicate on a forum, but I would encourage you to let her know that we are here for her (and you as well of course). I am so fortunate to have found such a wonderful group of friends, and it has meant so much to me even though I appear "well" and can continue to participate in many of the activities I was involved in before diagnosis. I loved going to the symposium and meeting others just like me (and because WG initially severely impaired my mobility, it was nice to not be the only 'young' person in a room without a limp and cane).

    There may be also things that she doesn't want to share with you as her mom that she would want to share here. I in fact won't let my mom or husband come on her (although he could find it easily enough; she never could) because I want to be able to vent without worrying them.

  10. #20
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    Just to add a dose of reality, I am one of those made sterile (at age 34) by Cytoxan. Like Mel, the CTX really kicked my butt. I took it orally (I believe it was 150 mg/day), but it was almost impossible to get out of bed every day for the 8 months I was on it. I managed to drag myself to work for a maximum of 4, occasionally 6 hours a day (no sick leave at that job, so it was a 50% pay cut). Almost all of my hair fell out within the first two months, and I truly almost would rather have been dead than feel the way I felt for so long. Luckily for your daughter, these days they don't give CTX for such long periods.

    Fingers crossed her docs can find a way to knock out the WG quickly without compromising her fertility!

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