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Thread: Limited Weggener's ? and labs

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    Default Limited Weggener's ? and labs

    Hi, I went to a University Teaching Hospital( where I live) with a large Rheumatology Dept. My 2nd doctor. She said I have limited Weggener's b/c I have no lung or kidney involvement. Even though I do have Sob but PVT was neg. Repeat bloodwork, Pr 3 has increased from 47 to 120 and my C- anca titer from 1.20 - 1.80. All other labs totally normal. I actually have felt really good the last few days. I do have ear involvement- had tube placed in Dec and still have issues. She said the disease could get worse or not. Does this disease do this? Can it also change from one day to the next?
    She is checking to see if I can take Imuran. Checking a genetic marker.
    I have not given up on going to a Vascular Center but think I should wait to see if this medication works- agree or not. Some of them do not require a referral.
    I am very confused about all of this and sometimes just have to stop looking at it all.
    I appreciate all the help.
    Deann

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    Hi Deann,

    Welcome to the club- sorry about the admission price. It is true that the disease may get worse or not. However, since you are getting treatment my vote will be that you will get better.
    For many people things do change from day to day or week to week .
    It can be a bit of a roller coaster - or you might just get better and stay that way. I have had Wegener's for about 40 years and I had a period of about 20 years where I had a drug free remission. In recent years I have had to battle a flare and persistent problems. There is no guarantee how things will work out.
    There are better treatments now than when I first got ill so to me this is a bit of a golden age for treatment.

    Plus, having the internet is a huge blessing. Being able to find information and being able to talk with others with wg has been extremely important to me. This is a great place to ask questions and find out what other peoples experience is . However, keep in mind that many of the people here , and elsewhere online, have active disease and problems to deal with.

    Don't make the mistake that I did when the internet was first invented. When I read about all the crazy things that could happen to people it freaked me out that I might have those things go wrong. The fact is that every one has a really unique journey with this illness. Many of the people who get remission do not tend to hang out on forums and this gives a bit of skewed view on how people are doing with the illness. I myself have been away from the forum for periods of time as I get busy with life. We love it when that happens to people.

    Where is it that you live? Are you on prednisone? What dose?

    I think it is lucky that you have a large Rheumatology dept at your disposal. Many are not so lucky. I too go to a teaching hospital and it is my opinion that those are a great place to get care. The teaching environment is a bit more open and flexible I think.

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