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Thread: Living with Wegeners for 20 years

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    Default Living with Wegeners for 20 years

    Wow - I am just sitting down to write this, and realizing this year marks 20 years that I have been living with Wegeners! That's hard to wrap my mind around!

    I was diagnosed in 1996 at the age of 16 (Maybe 1997 at 17?) - it was so long ago at this point that it all seems a bit fuzzy. I had suffered from chronic sinus infections for at least a year or two, but then developed joint pain across my body that was repeatedly dismissed by my doctors. It finally got bad enough with swelling that my Doctor's Nurse Practitioner took notice and ran some tests. They discovered a severely elevated SED rate and began trying to schedule me in to see a Rheumie. In the mean time I developed a severe cough with blood. Needless to say - that sped up the process of getting me in to see a proper doc. It devolved pretty quickly from there. I had bad kidney, lung and sinus involvement, as well as skin rash and a myriad of other odd weggie symptoms. A kidney biopsy and a positive ANCA nailed down a diagnosis of Wegener's, and they started me on high doses of prednisone immediately. I felt quite a bit better from he prednisone at first, but then my lungs relapsed and I was sent to the hospital for over a week. They gave me IV prednisone in large doses and started me on Cytoxan. Once they felt I was stable they released me, however, I awoke the next morning with my left leg swollen to nearly twice it's size. I had developed blood clots. So back to the hospital for a Greenfield filter and another week long stay. Really scary stuff as a teen ager. The doc wasn't sure that my leg would ever go back to normal - but thankfully it did. I have some pretty stretched out skin at the top of my leg, but I have full function other than some occasional edema.

    Dealing with all of that as a teenager was tough. I lost my hair and went through early menopause from the cytoxan, and gained a ton of weight, developed osteoporosis, and broke out terribly from the prednisone. Basically a 16 year old girl's nightmare. But I have an awesome family, and some pretty great friends that helped me through. I managed to graduate with high marks and even talked my parents into letting me go to university out of state. I did end up taking a semester of college off when I went into neutropenic fever from the cytoxan.

    I weaned off all of the meds by the time I was a senior in college, and had several blissful med-free years. During my twenties, I didn't have the best insurance or a good doc, so a lot of what I know now were Wegener's symptoms went untreated. I have always suffered from chronic sinus infections that usually take 2 rounds of antibiotics and prednisone to treat. I've also had on and off problems with joint pain. Looking back on it, I was pretty lucky that I never had a full on flare.

    In the past couple of years, the arthritis and sinus infections have gotten worse and have led me to seek better treatment. My insurance finally allows me to see my diagnosing Rheumie again (yay!) and he and his team have been great about monitoring my blood work, and easing my mind that a lot of the weird quirks of my body are just Weg symptoms. I've, thankfully never had another positive ANCA, but I do show signs of inflammation, and my kidney and liver functions often look off. We've been treating my current symptoms with low dose prednisone and plaquinil, but I would like to get off the pred. It makes me feel crazy, and I am now pre-diabetic. Unfortunately the joint pain it a real problem right now so we are considering Methotrexate or Imuran. I have never taken either of these - so I am in the process of doing my research so I can make an informed decision.

    I've lurked around this message board for years, and found a lot of solace and reassurance from the members, but I have never been brave enough to join in the conversation. But since I have been dealing with the Wegener's more lately - it seemed time to share my experience and maybe gain some new friends that can commiserate.

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  3. #2
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    Thanks for sharing your story. Wow, what a journey.
    I was on plaquenil but it did nothing to me. Usually wg is not treated by plaquenil but by Imuran and methotraxat. So this should be a better option of treatment for you.
    I think there is a test in the US to check if Imuran is suitable (we dont have it in Israel). I hope someone around will be able to tell more about it.

    Good luck and please update us.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    I didn't think the plaquinil was doing much for me at first either. It doesn't do much for my joint pain, but it does help with my energy levels quite a bit. I know they use it for lupus quite a bit.

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    Your doctor should provide a TMPT test to check your body's ability to process immuran/azathioprine. My first wegs doc didn't do it, and I had major problems -- even worse than at disease onset.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    So glad you joined us and shared your story. I'm so sorry that you had to get this unpredictable disease at such a young age. You are indeed a warrior, with a lot of experiences to share. I wish you all the best with your new treatment. Welcome to the best place to share your fears and express yourself about anything, there are always friends here. Please take care of yourself.
    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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    Hi Rachel, good to read your story. 20 years, amazing

    I take 200mg plaquenil and this is combined with methotrexate and prednisolone.

    I didn't think that plaquenil was doing anything for my joint pain, so with my specialists advice, we decided to stop taking it to see how I go.
    After about two weeks of not taking plaquenil, nearly all of my joints felt like I had been slammed in a car door, or I was involved in a serious car crush accident
    We decided that I should start taking plaquenil again.
    This was 4 plus years ago. I don't miss a day taking it now.
    I still have joint pain, but more of a continual ache. Nothing like the pain of not taking meds.
    I just thought that I would mention this because even though it doesn't feel like it's working, maybe it is.

    I do agree that you also need another immune suppressant with it though

    Take care and keep us informed of how you are getting on with Steve
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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