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Thread: Diagnosed, Devastated, & Defenseless

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    Default Diagnosed, Devastated, & Defenseless

    Hi Forum members, I'm Joni from Kansas, and my son 30, just got diagnosed with Wegeners. I know nothing about it. I have read some of the Medical websites that explains what it is. I have come to the conclusion there is nothing I can do, as his Mom, to make it better or fix it for him. I hope the members here don't mind me learning from them and what I can or he can do from reading your posts and maybe asking an occasional question or two. Thank you for accepting me in this Forum.

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    Hi Joni,

    Firstly i am sorry that your son has received this diagnosis, but hopefully you will both benefit from this Forum and what it has to offer, both in medical and phsycological support. Perhaps your son could post regarding his syptoms, diagnosis and treatment regime in the near future?

    Hopefully you have a "good" medical team who are familiar with the treatment of Wegeners.

    Wishing you and your son well as you come to terms with this situation. I was diagnosed 7 years ago and lead a pretty normal life right now. I know of several people on this Forum who are the same age as your son and hopefully they will give him the additional support he requires.

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    Quote Originally Posted by Joni View Post
    I have come to the conclusion there is nothing I can do, as his Mom, to make it better or fix it for him.
    Hi Joni!

    I'm 27 and was diagnosed at age 26, so I'm kind of close to your son's age. Speaking from my experience, the best thing my mom has done for me to "make it better" has been to simply listen to me and read up on Wegeners and the various treatment option so that she understands what is going on. If you want to watch a good video about the various medications used to treat WG, here's one from the Vasculitis Foundation: https://www.youtube.com/watch?v=j46f...o0jVz2t6ICzUEI

    My mom has also sent me little presents over the last year (I live on the other side of the country), just to show that she is thinking of me and she cares. Those little things really mean a lot!

    My mom also has done things that I found less helpful, like contacting doctors and the vasculitis foundation directly. In my experience this felt disempowering, but that might not be the same for everyone.

    I think how you can best help is by putting yourself in his shoes to figure out what he needs (or just ask him!). I think more than medical advice, he likely just needs someone to listen, suport him and be on his "team."

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    Joni, As a parent myself, I sympathize deeply with your worries. You and your son should definitely look at the Vasculitis Foundation website for more information and pointers, especially the list of vasculitis centers and specialists. Your son will benefit by consulting with one of the center specialists, and his physician/rheumatologist should be willing to work in consultation with a specialist, especially since the disease is rare, and it is important to keep abreast of the latest advances and trials.

    As your son is treated with prednisone to start with, he will feel much better right away. Prednisone is very effective in subduing the symptoms (but is not a cure), but can have many side effects - ranging from weight gain to sleeplessness and mood changes, to bone density loss and acid reflux and high blood sugar (hopefully not all of them simutaneously). It is important that he exercise mildly regularly. His doctors may suggest supplements for calcium and vitamins B-complex and D. Also, if your son is prone to gain weight, he should maintain a healthy, low-carb diet.

    Along with prednisone, the doctor will prescribe immunosuppressants - of which there are a few choices, protonics (for acid reflux symptoms), and Bactrim. If his doctor puts him on cytoxan, that has its side effects that need precaution. If he is on Rituximab, side effects are rare but the drug takes longer (several months) to alleviate symptoms and get into remission.

    The last part is the time it takes to recover from prednisone withdrawal symptoms - and that can take a few months. But your son is young and will bounce back in short order.

    The main thing is for him to be patient through this process, and for you to know that he will recover. It is a manageable disease, and with regular checkups he will lead a good long life.

    Stay strong, and all the best to you and your son.

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    Quote Originally Posted by Joni View Post
    Hi Forum members, I'm Joni from Kansas, and my son 30, just got diagnosed with Wegeners. I know nothing about it.
    Don't feel bad, everybody knows nothing about it when they're diagnosed. ER doctors have told me they never heard of it.

    I'd have to look up the terms to get all technical, but there are degrees of Wegeners. Some people linger with it for a while before symptoms become severe. Others, like me, get hit hard in a few months. Not to feed natural denial tendencies, but there is also the possibility of incorrect diagnosis which is quite common since it's rare and hard to pin down. If he was not diagnosed properly then time could be wasted which he could have used getting treatment for something else, or suffer unecessary side effects from the wrong treatment. Uh Oh, I'm getting scary here, better tone it down.

    First, get the best confirmation possible on his diagnosis. Combination of tissue biopsy and blood test for C-ANCA are one method of confirmation. With that you are assured of the diagnosis, but not everyone with WG can be diagnosed this way.

    Second, Wegeners can quickly damage... well anything in your body. So get every inch tested.

    Third, be a bit of a goofball, it works for me!

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    Joni,
    It is so great that you are trying to understand this complicated disease to be supportive to you son. This forum has so many great people to answer questions or just vent to. The really hard part about Wegener's is that just about every case is a bit different, so what happens to one may not happen to another. The best thing you can do is to understand and listen to your son about how he feels. Wishing your son all the best.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Thank you Geoff, I also hope he has a good medical team, since they are the ones who are hopefully working together to make him better. While he was in the hospital, it seemed one Dr. wouldn't know what another Dr. was doing. It was one of the most whirl wind hospital stays I had ever witnessed! I also hopes he posts In a forum, all the things that have lead up to where he is now, so he can get support and advice from others.

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    Thanks for the advice morningsunshine! I am sorry your far away from your mom, I cant imagine being that far away from my children, especially when they are sick. Thank you for the video, although I have no watched it but I will..I could or would not contact his Dr.s, I hope he knows he can discuss anything with me and I will be there to listen and do what I can to help him feel better...

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    MaxD, I will pass this information on.. I am not 100% positive but, a lot of the medicine you mentioned above he is taking. Yes, Cytoxin is one, which I am not found of, but maybe he will not have to take if for long??? Thank you for the encouraging words!

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    Quote Originally Posted by Joni View Post
    MaxD, I will pass this information on.. I am not 100% positive but, a lot of the medicine you mentioned above he is taking. Yes, Cytoxin is one, which I am not found of, but maybe he will not have to take if for long??? Thank you for the encouraging words!
    Cytoxin (150mg daily)
    prednisone (50mg daily)
    prenisolone eye drops
    restasis eye drops (only taking this because it was very expensive, I won't be renewing this one)
    levoflaxim (750mg daily)
    bactrim (2 daily, for the bacteria that has grew in the cavity in my lung)
    Citrical
    Oxycodone

    got a pretty full pill sorter

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