Brand New to my Wegner's Diagnosis

[txrepub4God]

Hello all! My name is Teri, I'm 40 and I live near Ft. Worth, TX. I was finally diagnosed with Wegener's about 2 weeks ago and was put on 64mg of prednisone and on Cytoxan. I have been very ill for about 7 months, and this disease was going to claim my life if they didn't figure it out soon. I have kidney, stomach, and heart involvement, as well as the ever-present sinus issues. I had to do my own research of many of my blood tests over the years, and finally asked my doctor to test me for Churg-Strauss vasculitis, and that's when they found the Wegener's. How long have each of your been suffering from this disease, and how have the treatments worked for you? Thank you for any info you can give me!:drool:

[Evie22]

Hi Teri,
I am in Ireland, and have had Wg, for 17 years, was on much the same treatment as you and it took 18 months to 2 years to get into full remission. Have to say I had great improvement in my condition in just the first month, from being not being able to get out of bed without the help of my elderly mother, to planting a hedge in the garden 3 months later. Be positive things will improve for you

[txrepub4God]

Thank you for the encouragement, Evie! The medications have actually made me feel like a human again for the first time in almost a year. I had to quit my job & was pretty much bedridden & housebound. I really felt as if I was close to death a few times. I pray the medications continue to work & I can get back to living a mostly normal life again!


Hi Teri,
I am in Ireland, and have had Wg, for 17 years, was on much the same treatment as you and it took 18 months to 2 years to get into full remission. Have to say I had great improvement in my condition in just the first month, from being not being able to get out of bed without the help of my elderly mother, to planting a hedge in the garden 3 months later. Be positive things will improve for you

[Dirty Don]

Hi Teri, welcome to the best little WG site in the world! LOL! There is info and caring here that you will be amazed at, and hopefully can use to your benefit. My story is pretty simple: evidently had WG for about 2 years before I collapsed into a coma, came out of it 10 days later, lots of drugs & rehab, a great and suspicious and forward thinking group of docs, a Mayo pathologist dx the WG, I'm now with Mayo, in medical remission after almost 2 years since coma. Life is good, could be better, but not really...just glad to be here. Ask lots of questions, vent when you have to, and always be patient and in charge of your care and your self! Best to you.

[annekat]

Welcome, Teri! Like many, I most certainly had Wegs for at least a couple of years before I was finally dx'ed about two years ago. I had an easier time than some, and can only think of a couple times I actually felt close to death, although I doubt I was. My first very sick time was with a severe infection in both ears which was very hard to treat, resistant to most of the usual antibiotics. That did clear up, but I was pretty sick for weeks after that; I had no energy at all and couldn't return to work right away. Then I settled into a pattern of recurring sinus infections, hearing loss, allergy testing and shots, with some transitory joint pain eventually creeping in. Then my second really sick time happened, when Wegs hit my lungs and I thought I had pneumonia or worse. Classic Wegs things like night sweats, coughing up blood, and extreme fatigue were now appearing, along with headaches and disturbances in my eye area, etc. etc. So between 3 different docs, I was finally dx'ed and started on Cytoxan and prednisone. I'm doing pretty well now. I might even be close to a medicated remission.

There's more detail to my story and everyone's is a little different. It's interesting how you did your own research which led to your dx. Sometimes that is the only way! I knew about Wegs before ever thinking I might have it, from researching my symptoms on the web. And I started reading this forum before knowing I had it. So when my saddle nose appeared right before my dx, I already knew what it was!

Best of luck in getting your Wegs cleared up to where you are feeling better and can feel more like your old self. The CTX should work very well to clear up your symptoms. Not having heart or kidney involvement, I can't comment on those, except to say I'm sorry you have them and hope the drug works as well on those as it did on my lungs. Please keep us posted, ask any questions, tell any stories, and again, I'm very glad you found this great forum.

[marylz]

Welcome Teri,
I actually got a pretty quick diagnosis in that I was in the hospital with severe lung problems. They thought pneumonia at first, but it didn't respond to any antibiotics and they diagnosed by process of elimination rather than any definitive tests-unfortunately I am not as good candidate for any biopsies due to other medical problems. I was started on 60mg of Prednisone, bactrim and other meds and got my first infusion of CTX while in the hospital. They have been tapering off on the pred and am now on 20mg and a CTX infusion once a month. (I had #4 today- Yay!) I think they plan on doing 6 total and then switching me to imuran. Are you doing CTX infusions or oral meds? I am still very tired and have headaches and see my doctors quite frequently as well as have labs done, but I know that means they are keeping on top of things and therefore is reassuring to me. I also check this forum quite often and have learned so much from the people who post. Doctors can "say" lots of things, but they haven't lived with wegs and the people here have. They tell the bad and the good and give you the opportunity to vent and cry and laugh.

Mary

[RudiK]

Hello Teri, welcome to this group, although I wish you didn't have to find us. I'm from
El Paso and was diagnosed two years ago after being sick for a year and going "through" seven doctors before I found a doctor who recognized my problem. I have kidney involvement, loss of feelings in my feet and the finger tips of my right hand, and problems with my left ear. I'm now in remission, still on 5mg preds, 75mg imuran and several other meds. If all goes well I hope to be off the preds and imuran by the end of the year.
If you have any questions just ask, there are some very smart people on this page that can give you advice with just about any problem related to WG.

Good luck. Rudi K.

[Alysia]

. I have kidney, stomach, and heart involvement,

Hi Teri, welcome to the forum. it is the best place for weggies :hug3:
It is quite amazing that you are the one who have found your diagnosis :thumbup:

I wanted to ask you, what do you mean by "stomach" involvement ?
I suspect I have colon involvement. my gastro doc said that although it is rare, there can be WG inflamation in colon :confused1: Im suffering from pains and diarhea and cant eat a lot of things. the good point in it, is that Im thin and that is nice :wink1:

[mishb]

Hi Terry, it's a welcome to you from Australia too.

Having heart and stomach issues makes you one of the rarer ones and we certainly look forward to hearing how things are progressing and being treated.

Take care