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Thread: Some nuggets from yesterday's checkup at Cleveland Clinic

  1. #11
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    So glad to hear you're doing well, Pete! I hope everything goes smoothly while tapering the meds.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

  2. #12
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    Hey Pete! I'm just getting back into posting on this site and was so happy to see you had great test results! Woohoo! Keep up the good work!!
    KB -- "The good life is inspired by love and guided by knowledge". Bertrand Russell

    Dx in September, 2011. Major involvement: kidneys and lungs. Medical implications: fungal pneumonia, drug-induced hepatitis, allergy to fungal meds, ear infections, sinusitis, gall bladder removal, vitreal detachment, and eye cellulitis. Medial meniscus removal (unrelated to WG). Medications: Rtx, Pred 5.0, Lisinopril, Chlorthalidone, Levothyroxin, Omeprazole.

  3. #13
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    Always glad to here good news with WG. I need to find the best doctors to address my subglotic stenosis. I'm going to travel to the best. I will be needing dilation. Any names of doctors who do this and do it routinely would be helpful. I have read a lot of good posts about Cleveland clinic I just saw local pulmonologist and his advice was to find the best. Any advice would be great! Thanks

  4. #14
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    when you say WG free is that without drugs? Or were you on something?

  5. #15
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    Not sure my last post went to the right place. You said you were 20 years WG free, was that without drugs?

  6. #16
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    Loisann11. Yes I have had a 9 year remission and now 11 years and counting. I take bactrim twice a day Before bactrim. I relapsed often

  7. #17
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    Quote Originally Posted by daystarr8 View Post
    Loisann11. Yes I have had a 9 year remission and now 11 years and counting. I take bactrim twice a day Before bactrim. I relapsed often
    This is all fairly new to me. I started with problems just before Christmas last year. Double pneumonia. Was at Banner in Sun City Az, Dr I had was looking for cause and came up with possible WG. I was on 40mg prednisone and got better so came back to MN where I live. Was weaned off of Pred but was not feeling good about Easter so went to ER. Was in for 8 days as they did kidney biopsy to verify the WG. I did not have any problems with kidneys that I was aware of but Kidney Dr. was one who took over. Anyway after replacing my platelets with new ones, going on 60mg pred along with Bactrim, etc. I got better. I also got 4 infusions of RTX. My biggest problems were the side effects of the Pred. I had all of them. Finally told Dr. I would be in bed full time if I didn't get off it. So I got better. I am now on Imuran, bactrim and 2.5mg of Pred. I feel just like I did before I ever got sick. 30 lbs. heavier and all my arthritis back. HATE taking meds. Next week I am going to Mayo Clinic for second opinion. I just don't feel sick.... good to hear about your remission...

  8. #18
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    Let me know how the Mayo appointment goes. I'm glad you are feeling much better. Keep me posted

  9. #19
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    loisann, I was at Banner Boswell too...they had the same reaction to me, finally sent pathology to Mayo Phx, they had it overnite, so I am there now. Banner was very slow at putting a team together, so Mayo it was.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  10. #20
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    I had good Dr. just couldn't stay in PHX. much longer. Needed to get home to MN. They couldn't do biopsy on my lungs since they were in real bad shape. Spitting up a lot of blood at the time with the double pneumonia. Was on oxygen for a month. At least they told me what they suspected so I could go research on the internet. Once I read all the early symptoms I was pretty sure I had just gone through most of them. 40 mg pred was do-able but I ate a lot. Was on that with a taper till mid Feb. Felt fine. Got home by March 1st. By Easter I knew I probably had it as was getting tired again and breathing was getting harder. So figured trip to ER. Lung Dr. laughed at me and wondered why I thought I had WG... I said because other Dr. said so. Lucked out I guess since Kidney Dr. said they were involved so he did the biopsy on them to verify others were right. Next couple months I was tired a lot but otherwise good. 60 mg Pred was the killer though. Back got very bad, hard to walk, then my eyes got really red, watery, sore. Went to eye Dr. but he agreed it was the Pred. So back to Dr. and told him I had cut back to 40... he said I could go to 30. Pred side effects took a good 6- 8 weeks to clear up. Down to 2.5 and wonder why I even bother, pills are so small. Been on 200mg of Imuran 9-2-2014 and only had lab work done once. I never saw or heard anymore on how I am doing. Figured it couldn't hurt to get 2nd opinion from the Mayo. Can't wait to get there. I really want to cut back on drugs if at all possible. I read a lot of threads on here and think that I can't really what you all seem to have. I just don't feel like I have anything wrong with me. Maybe they made a mistake... I know I am really one of the lucky ones and can only hope there are more.

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