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Beth
01-23-2009, 02:37 PM
Hi everyone,
My name is Beth and I live in Lancaster, PA. I was diagnosed with Autoimmune Hepititis 8 years ago and had it under control for about 5 years. Then I had a flare up and the Doctors realized I had a pretty severe case of Ulcerative Colitits and was hospitalized for 2 weeks to bring it under control. A year later I developed severe chest pain, coughing up blood and weight loss. I had vasculitis throughout my sinus and lungs. After a week of lots of specialists scratching their head and no one wanting to make any decisions or diagnosis, I was transfered to Georgtown Medical Center in Washington, DC. There I was diagnosed with Wegener's. I was treated with very high doses of IV steroids (1000mg) for 3 days before finally sending me home on 100mg prednisone and methetrexate and a lot of other meds for my liver and colitits. It's been a very very long 18 months. As soon as my prednisone was reduced to under 40mgs, my colitis flared up and then my liver function went out.

About a year ago, I started on Remicade for the colitis and finally I am feeling well. I exercise 6 days a week and eat as healthy as I can and my energy is returning. I'm even back to working 30 hours a week. I have days that I am exhausted. My predisone is down to 10mg every other day and I seem to have some trouble with eye infections and sinus infections.

Reading the other threads has made me realize I'm not alone in these struggles with various symptoms. I'm the only patient my rheumy has that have the 3 diseases that I have and so things are not always clear as to what is the best treament and if it will work. It's so frustrating.

I'm interested if there is anyone else out there who has Wegener's in addition to other autoimmune diseases.

Sangye
01-24-2009, 01:19 AM
Hi Beth,
It's nice to meet you. Wish it were under different circumstances! :p

I'm sure you'll find lots of other people with multiple autoimmune diseases. I don't have other AI diseases, but I do have lots of rare or not-so-common complications that make treatment and my general life more difficult. I hear you!

I was also in the 3-day 1,000 mg pred club. I had to go on cytoxan instead of metho and I got a ton of blood clots at the same time, so I'm still (2.5 yrs later) not at the point that you were within a few months-- exercising? work? WOW!!! NOT that you probably feel like celebrating, though, I understand. I've had people tell me, "At least you're not still on oxygen" or "Remember when you couldn't stand long enough to brush your teeth?" forgetting that all those things are great, but isn't very comforting when you're still not okay! :)

crackers
01-24-2009, 11:13 AM
hi beth.it sounds as though you are doing really well.exercise AND work wow.my working days are over and as for exercise up and down the stairs is about my limit and then i'll fall asleep for 2 hours.wg is one of a number of diseases under the banner of connective tissue disease.i have symptoms of 2 or 3 different ones which is hindering effective treatment.come back and see us soon.
john

andrew
01-26-2009, 08:47 AM
Hi Beth! Welcome! Well done on getting back to work and exercise!! Sinus/eye infections are the worst. I feel for you. Could it be related to issues with reducing the Pred?

You are certainly not alone in your struggles. You can vent just about anything here and we'll do our best to help. Fir sure though, I've never known anyone with a trifecta of AI diseases. You must feel very 'special' ;)

The closest I can come is my Dad and Sister both have AI-related issues. I guess that's a trifecta of sorts.... :cool:

What kind of exercise do you do?

Beth
01-27-2009, 03:39 PM
Hi everyone,

Thank you for sharing your experiences. It's so helpful to hear what other people are going through and knowing that I'm not the only one dealing with this illness and it's symptoms. I work as a respiratory therapist doing pulmonary function testing and I have had very few patients with WG. But working in the pulmonary field helps me keep on top of my Diffusion Capacity, lung function and O2 sats.

To answer Andy's question. I do 25 mins on the bike and 25 mins on the ellipitical 6 days a week and then do weight training 3 of those days. When I started out I could only do about 5 mins on each and the weight training was very low weights and reps. I've come a long way in 5 months. The results have been so valuable. I've lost 40 pounds and my blood pressure and blood sugars have decreased. (no thanks to the prednisone)

I'm go back to see my Rheumy in about 3 weeks. I've been on the same dosages of meds for a couple months now, so he's going to re evaluate my diseases and see if maybe we can make some more adjustments. I'm keeping my fingers crossed.

I've read alot of the threads and I realize I'm doing really well and on the right road to recovery. But on those days that I can hardly get myself out of bed, I know I'm not alone.

Thanks again for your stories and support

DuaneHart
05-08-2010, 05:22 AM
Hi Beth, I share your misery and hope you are feeling better. I was diagnosed in 1996 with IBD, Ulcerative Colitis and Crohns disease. I all went into remission after about a year of prednisone, azulfasalisine, pentasa and a bunch of other drugs. In 2008, things started going down hill. Had a stent put in my heart for a blocked artery and in May 2009 was diagnosed with Wegeners. Ive been on 50mg prednisone and 15mg methotrexate for the Wegs (could not tolerate Imuran). They began tapering the pednisone very slowly and in March 2010 got down to 10 mg pred. That is when the beast (Ulcerative Colitis) decided to rear its ugly head after being quiet for 13 years. Spent a week in the hospital over Easter to get it under control and get my hemoglobin back up. Prednisone was increased to 60mg and mtx to 25mg. They now are going to taper me off the prednisone, going down to 40mg for a week, then down by 5mg increments weekly and decrease mtx to 20mg until June. The next plan is to start Remicade. If that is good or bad, I don't know. The pred is horrible--sweating, huge weight gain, etc and the mtx totally exhausts me for 3 or 4 days so hopefully the Rimicade won't be as bad. I was told it would have less side effects. Who knows??? Anyway, I just wanted to let you know that you are not alone in havine multiple autoimmune things. Hang in there--THINGS WILL GET BETTER!!

sharon
05-08-2010, 02:55 PM
Hello Beth,
so glad you found us, Great to hear you on the way to recovery.

JanW
05-09-2010, 12:14 AM
Glad that you found us Beth and thanks for sharing your story.