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Thread: Finally decided to reach out...

  1. #1
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    Smile Finally decided to reach out...

    Hi. I have had Wegeners for 10 years now and have had 4 "relapses" since I was first diagnosed. I am 32 years old now, have taken cytoxan + pred 3 or 4 times (the last one was the double-blind RAVE study at Hopkins so I'm not sure if it was cytoxan or rituximab yet, although I should find out soon since the study is now over.) I have also taken rituxan once since the study treatment and now am on immuran as a long-term preventative measure.

    I have recurring subglottic stenosis and have had 11 surgeries to open the airway along with one tracheotomy. The last one I had nearly killed me as I had a reaction to the mytomycin-C they injected which blocked my airway in the middle of the night. I could go on and on, but those are the highlights.

    BUT, I made it and here I stand with a wonderful supportive family and two daughters, 19 months old and 5 months old. My husband and I were told we would never have children due to the cytoxan, went through IVF and AI with no success, so we adopted our first daughter, and then became pregnant 6 months later. Life is amazing.

    I have a full-time job here in Texas and try to live life to it's fullest. For the longest time, I didn't want to reach out to other Wegeners patients or even subscribe to newsletters or message boards as I felt it was a daily reminder of the disease we are living with. I have since come around to the idea and realize what a good support group can do for you, and what my experiences could also do for someone else.

    I have a blessed life and hope to live another 60 years to enjoy all life has to offer.

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    That is great Hrunci! You are really busy, and such a positive person. It is great to have family support, I could not do it without them. Both of my children are adopted too. Are you in remission? Are you off prednisone?

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    Hi Hrunci, I'm glad you decided to join our group. You have a lot of experience with Wegs and living with it at a young age. I didn't want to be involved with other Weggies, etc... for my first 2.5 yrs. I understand your feelings.

    Thank you for participating in the RAVE study. I'm a direct beneficiary of that work, having had 2 month-long round of ritux.

    How wonderful that you have two little girls. Surprise! We can never tell how resilient the body is.

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    Hello Hrunci,
    I too have the subglottic stenosis. I too have had numerous surgeries! I too have had a tracheheotomy! I too have a supportive family with a full time job. The difference I have is I am about 20 years older than you and my 3 children are now out of the house. I agree that a support group is the key to helping you and others through trying times. Although, I amnot on here as often any more, it became a true source of strength for me during my early diagnosis. I am so glad youjoined us!
    coffeelover

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    Hi, Hrunci, I too have SS; had my first surgery in March and await the doc's word on when I willl need my second. So far so good...I am fully open...was down to a 2 and now I am a 9. I lived with it for five years misdiagnosed as asthma. I have a supportive husband and two kids, 12 and 8. Welcome to our group. It's wonderful!

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    Thank you for the wonderful responses. I am new at this so it will take me a bit to get used to talking with others about my journey, but I am thankful to have found you all (and my husband is really proud of me for opening up).

    I am off of prednisone although every time I relapse I go back on and blow up like a balloon, but I am thankful for the times that I am off and always try real hard to get the weight back off as quickly as I can so I am back to ground zero when I relapse and start it all over again. Although I am now working on post-pregnancy weight. haha.

    Speaking of which, if anyone is interested, I have felt better than I had in years while I was pregnant. The doctors weren't sure how it was going to go, but it was great!

    Does anyone with SS have a particularly bad cough after having so many surgeries? I have tried EVERYTHING to help with the cough, but nothing seems to work...any suggestions? Things I've tried:

    humidifiers
    vicks
    mucinex DM
    Robitussin
    cough drops
    cough syrup with codiene
    honey
    asthma inhalers
    reflux meds
    tesslon perl

    The only thing so far that has worked is being pregnant (cough went away almost completely, and the codiene cough syrup, which I hate to take very often as it knocks me out and I have a 19 month old and a 5 month old...not good to be so tired.) I think the issue is now the scaring and it's so sensitive after so many surgeries, so I really don't know what to do for it.

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    I am wondering if your wegeners is controlled if your coughing. What does your Wegeners Specialist think? I know codiene works, I had to use it after my lung surgery, but like you said I could not be on it long.

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    That's a good thought elephant, but I get labs done monthy (just had them done last week) and I fortunately never have had much lung involvement, and I can actually feel where the "tickle" in my throat is...right where the surgeries are always done. It has gotten progressively worse after each of my 11 SS surgeries and this last time it was a mess because the doctor had to go back in and vaccum out the membrane that grew across my airway in reaction to the mytomicin-C they injected. I have been coughing like crazy ever since.

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    It could be post nasal drip too. Sounds like there is something in there that is irritating your throat to cause you to cough. How are feeling otherwise? I didn't know I had lung involvement until I had a CT of my lungs....I had a couple normal Lung CT then six months later a good size lung nodule had to be removed ( they were not sure if it was cancer). It was confirmed a Wegener's nodule. Many Wegeners Specialist don't go by labs. Some people here on the forum have very active Wegeners and have normal labs. So everyone is different. I know how annoying the coughing can be. Hope you find your answer soon.

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    Hrunci, I have a theory about why you did better during your pregnancy-- including the cough.

    Most "healthy" people have subclinical adrenal weakness due to chronic stress, chemicals in environment, etc.... You can always tell a woman who has subclinical adrenal weakness because she felt much better during pregnancy than normal--emotionally and physically. This is because her body will draw on the baby's adrenal supplies. It's a horrible trick of nature but her body "steals" adrenaliine and other hormones from the baby in order to survive.

    The baby is born with subclinical adrenal weakness and once it's born, the mom has major withdrawal symptoms. It's very common for babies in this situation to have frequent colds, fevers, viruses, etc... Sometimes it doesn't show up for several months. However, the mom usually can tell right away that her body is off. This is the cause of post-partum depression-- sudden withdrawal of adrenal hormones. It's a difficult situation, because you get a cranky baby and a depressed and exhausted mom. I saw this every day in my practice. Both mom and baby can be corrected, but it's far easier to prevent it by making sure a woman has strong adrenals before becoming pregnant. Tribal cultures knew this and fed potential mothers special diets to strengthen them.

    The situation is much worse for someone who's taken pred. Pred depletes the adrenals terribly--beyond what medicine can measure. Having been on pred before, your adrenals were not fully restored when you got pregnant. So the same scenario happened. Why did the cough go away during pregnancy? I think it might be that your Wegs is barely controlled. So adding a bit of natural corticosteroid via the baby's adrenal glands actually worked like a small dose of pred.

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