My mother was diagnosed

[LauraNW]

My mother was diagnosed with Wegener's disease in February of 2013. She is currently on prednisone and has finished six doses of IV Cytoxan given every 3 weeks. The past five months have been a nightmare for her and my family (I am an only child and my father is deceased, so my husband, two kids and myself are her only family).

I would like to tell her/our story because I am wondering if anyone has had the same type of experiences that she has had. Can one of the admins or members recommend which board would be best for that?

I have benefited from reading so many of your stories so far because it gives me hope that one day, she may return to a somewhat normal life. Or at least a better "new normal"..... She has been an surgical RN for 40+ years. She does not deal well with any illness that lasts more than 2-3 days, so the last five months have been horrific for her (she is 68 years old and was training for 5k runs when she got sick and was diagnosed, plus working full time). It has also been hard for her because she is missing out on time with her grand kids (ages 4 & 1), and that hurts her more than anything.

Thanks,
Laura

[Pete]

Hi Laura,

The good news is that your Mom was in above average health when wegs hit. I was 64 when the disease showed up and was also in pretty good shape (swimming 1,500 meters 2x/wk and walking 3-4 miles the other days). I was on oral ctx 100-150 mg/day plus 50 mg/day of pred. I had recovered somewhat after a year and had a flare/pneumonia that set me back a bit. After recovering from that, I was switched to 15 mg/wk of methotrexate and began a slow taper off pred. Now, I'm in a medication induced remission. I've lost about half the weight I gained on pred (need to lose another 10 lbs). I've resumed exercising (walking 2-3 miles 4-5x/wk), playing golf occasionally, and renovating my back yard. I don't have the strength and endurance I used to, but my "new normal" is pretty good. I also see my grandkids several times each week.

The best advice I can give you is to find a wegs specialist. Look on the Vasculitis Foundation's website for a list. Most docs have little experience with Vasculitis in general and wegs in particular. A specialist will be up on the latest treatment protocols. Your Mom also has the benefit of working in health care, so she can better understand what the docs are telling her.

The best news is that her "new normal" shouldn't be too much different from her old one. Who knows, she might run marathons or climb Mt Everest! Good luck to her.

[HopeinTN]

Welcome Laura and happy you found us! I hope your mom gets to her "New Normal" quickly and can start enjoying those grand kids!

[annekat]

Hi, Laura, and welcome to the forum. I was dx'ed at age 58 and was in reasonable health except for having had a series of ear and sinus infections for a couple of years prior to dx, which were undoubtedly Wegs related. I was not as physically active as your mom, though. But for me, after 5 months I was feeling somewhat better, but still had a ways to go to feel anywhere near "normal". Now it's been a bit over two years and I feel very good. There are some residual symptoms, I'm still on meds, and I still get tired more easily than I did before. But I can do physically demanding things; I just need to pace myself and not overdo it. I think your mom needs to give it more time, and some day it is very possible that she will be able to train for and run in marathons again. She may not win them, but she can finish them and will still be a winner! Best wishes to her, and feel free to share as much as you want of any specific things she is going through or that you have questions about. This is a very giving group of people and the more you ask and share, the more you will get back! Do keep us posted on your mom's progress. And anywhere you choose to post is fine!

[Marilyn]

Laura, I feels you are telling my story, I was 61 when my husband died and 1 month later in ICU, and I almost died. I am also an RN and working full time, in good shape excercising daily, walking 4miles. What a shock for me health wise when I couldn't remember what really happened to me and I too take care of people, not the other way around. I had the same treatment with the IV cytotoxin and had lots of side effects, felt bad. But I was able to go back to work and have had good days cane some not so good. I finally felt like myself again, not weak in my legs and out of breath. Tell her there is hope and always someone more sick that we are. This dx can be handled with the right MD. Tell her from one sister nurse to another, there is life after Wegeners. Marilyn

[LauraNW]

Thanks so much for the replies! You all seem to tell my mother's story in one way or another! She spent years staying healthy to try and avoid our family history of diabetes and high blood pressure. I'm pretty sure she would have died initially if she hadn't been in such good shape. She started with the sinus involvement and hearing loss, then developed cardiac arrhythmias, high blood pressure, lung involvement, presumed cerebritis (two seizures), and acute kidney failure (we did manage to avoid dialysis although her creatinine got to 5.7). She started Imuran last week and we are continuing to taper her pred dose. There have been all sorts of glitches and bumps in the road, but we are getting back on the right track.

She is slowly starting to feel better but gets very frustrated when she has a bad day. Reading these forums has given me encouragement that she can return to a somewhat normal life, even if she can't run 5k's, maybe at least she can run after her grand kids!

Her current rheumatologist is currently treating 9-10 Wegener's patients (we live in a town of 20,000, so there you go). He has really gone above and beyond for us. (He is also my next door neighbor, which may be unfortunate for him.). We have also been happy with her pulmonologist, nephrologist, neurologist and cardiologist.

Thank you for letting me be a part of these forums (this isn't mom's thing). I have learned so much already!!

Laura

[mishb]

Hi Laura and welcome.

I am glad you are here on behalf of your mum. I would do the same thing.

Mum sounds like she is receiving excellent care.

I don't think any of us would imagine that one day your next door neighbour would have to save the life of one of your family members. :thumbsup:

[Alysia]

Hi Laura,
welcome to the forum. your mother seems to be a strong person and I believe she will soon feel better.

[DJS]

Welcome! My wife was also an RN who was in great health, no pills, exercised daily, but at 70 her head and lungs filled up.
It took from May until Dec to get off cytoxin and about March to get off prednisone. Her problem now is how to avoid sick people and other unhealthy situations. Also how to read her body to know when to call for an antibiotic, and when to rest and say no to activities.