Hello from central Texas.

[deb]

Hello to everyone. I am learning to live with this disease and am very grateful for this forum. I have been reading for some time. I am sorry it has taken me so long to introduce myself but here is an effort to provide my history with Wegeners.

SYMPTOM HISTORY:
In 1981 our family moved to the hill country west of Austin, Texas. After a decade or so, I began to develop what we believed were allergy symptoms to the local cedar and oak pollen. We tried to treat it with over the counter allergy remedies but none seemed to do the job completely and during the last 8 or 9 years, my symptoms seem to be accelerating in intensity and frequency. I had the normal allergy symptoms such watery eyes, runny nose and stuffy nose. I started a cycle of dealing with the symptoms until I was exhausted and my immunity was lowered. I seem to catch everything. (I did work in schools) When I became sick enough to go to the doctor (which took a lot for me), I had usually contracted strep or developed sever sinusitis. We treated the immediate problem but never seem to kill the culprit causing the symptoms in the first place lending credence to thinking it was allergies I just had to learn to live with. (I am great at justifying anything.)

The last 6-7 years three new symptoms have appeared. I started having drainage of junk I got choked on and had to cough up. I developed hard chocking coughs as a reaction to it. I also lost my voice for periods of 8-12 weeks or it became raspy or a high squeak if I could talk at all.

About 3 years ago or so, I had gotten extremely run down, coughing so severely that I was hurting my ribs and was in severe pain. The pain made it difficult to breathe. I ended up in the ER. They started me on steroids and antibiotics. I stopped coughing and healed up in a matter of days. Within a short time, the allergic symptoms resurfaced then slowly began escalating again until I realized it was all back. This cycle continued as we tried different antibiotics and varying dosages over the next several months. Within days of being off the steroids, each time symptoms began coming back.

During the next couple of months, I also began experiencing random, roaming inflammation of my joints. If I did anything to strain any part of my body, it seemed to inflame the hurt area. The doctor thought I had sprained at various times my wrist, my hand, my elbow, my knee, and my foot. The worst was when I woke with extreme pain in my arm which continue throbbing so badly that my husband was afraid I was having a heart attack. We went to the doctor the next morning as I could not move my arm above my waist and she said I had an inflamed rotor cuff tendon. She noticed my sinus symptoms and prescribed a steroid pak to help the inflammation knowing it would help my other symptoms and told me to exercise my arm so the joint did not freeze up. I felt better the next day and after a day or so all pain was gone. None of this made sense until I began trying to write down what I was experiencing.

DIAGNOSIS:
My family and co-workers finally demanded I see an ENT specialist or lung pulmonologist. I went back to my doctor and we did lung x-rays to rule out anything there. I got to see a recommended ENT doctor 2 months later. He examined me, ordered 9 blood tests, urinalysis and did a scope procedure. In June of 2008 he called to tell me I had Wegener’s and that he had arranged for me to see Dr. Sayer, a Rheumatologist who treats a lot of Wegener’s patients in the Austin area.

Since then, I have been under Dr. Sayer’s care and have had a lot more tests (CT scans, x-rays, bone density, sonograms, etc). He seems to be very knowledgeable about Wegener’s, its history, and treatment options. He immediately put me on Methotrexate injections and high doses of prednizone. I was initially on bactrim as well but have been off that for a while.

RECENTLY:
Recently, when the tip of my finger cracked from dryness, it became very sore then started to turn cold and black. My doctor says that my body is trying to clot off the hurting area (part of the last flare). We started a whole new series of treatments to keep from losing my finger.

I have limited Wegener’s. I have experienced 2 flares which I have weathered but have discovered (as many of you have mentioned) that after each flare, the medication and side effects affect the new you differently. My rheumy says that he has seen good results with Rituximab in patients that have experienced recurrent episodes of active Wegeners and that will be our next move if I have another flare.

CURRENTLY:
I feel very fortunate that I have a strong faith, a supportive and loving family, and a good doctor. I was diagnosed just after my Mom (who lived with us) had stomach cancer surgery and we were in the cycle of chemo and radiation treatments. I was still working full time, my daughter was pregnant with her first child, and within a month my Mom had a massive stoke. We spent the next month in the hospital then took her home for four months under hospice care. Stress piled up as we tried to deal with her loss, settling her estate, the birth of our first grandchild and my upcoming retirement. I had little time to digest anything about Wegeners. Then I found this forum. You all have helped my understanding of our unique challenges and to accept the new normal for me. Depending on the medications, I can think clearly again some days. You have provided so much information and hope. I really enjoy the atmosphere created here to just be and I look forward to participating with you.

[elephant]

Welcome Deb and so glad your doing good. I have experienced many of the same symptoms that you described. The good thing on this forum is that if you have a thought or question were all here to help. No question is stupid. During our adventure with WG weird things come up and someone in this forum will have experienced the same symptoms or going thru the same thing. Keep us posted.

[Sangye]

Hi Deb,
It's nice to meet you! It sounds like things are going okay for you at last! You've sure been under a ton of stress. It's amazing you weren't sicker than you were.

Wegs + Stress =

[onatreetop]

Good to hear from another Wg with a crazy life. I am glad you are getting the help you needed before you got really sick like some of the others here. I can say that this forum is honesty a gift.I wish Ihad found it in the first weeks. That was the hardest time for me. I am better now and excepted this new part of life and I am going to roll with it. I cant sit still anyway so you can only imagine what I must be like on the higher dose !!
Welcome, and great health to you!!!

[Cindy]

Welcome Deb,

You mentioned Limited Wegener's which is what I was told I have, but as far was I can tell: if you have WG you have WG. I think the "limited" term means that the damage is currently limited to certain area(s) of you body. However, I believe this is a misleading term because we know that things can be happening without us realizing.

Any thoughts?

[Sangye]

Cindy, you are right about both things... Limited Wegs is the same disease as Wegs, it just means the disease is limited in its involvement. Typically it means the kidneys aren't involved. It isn't a statement on the severity of the disease. You can have Wegs only in the lungs but still die from it.

Limited Wegs can change at any time. My Wegs specialist surprised me recently by saying that if someone has never had kidney involvement for some time, they are highly unlikely to ever have it. So there may be more to the "limited" aspect than we know. With earlier diagnosis and Weggies living longer, they'll have a better chance to study how/if Limited Wegs extends into kidneys.

[Cindy]

Sangye,

You have been offically titled "WG Information Specialist"

Thanks for that piece of info!

Hopefully my Vasculitis Foundation Event from April to June will raise enough money so support more research We need research, more specialized medications, and treatment options.

[deb]

Hi Cindy,

I understood that limited just meant that it was mostly in your sinuses and not major organs yet. I assume that it can always progress into other areas and that this just referrs to the current status.

Fortunately all my test came back with no major organs affected but I credit that to some prayers and healing services I was attending when I was diagnosed.

Sangye has a lot more experience with this than I do so I defer to her.

We have not gotten my case into remission yet and my doctor is concerned about what I call two flares. I just need to get off the predinzone for a bit. After the last flare, we had to take it back up and I balloon something aweful. Not like before but skin so tight and swollen that I thought my eyes would swell shut. I am back down to 15mg now with the Methotrexatre injections and am finally getting back to just plain ole moon face. Never thought that could feel so good.

I am still very grateful for medication to treat this disease.
Thanks for your reply.
Deb

[Sangye]

Deb, I have Wegs involvement primarily in my lungs and joints. I've had skin involvement at times. My nose is having some involvement but nothing major or damaging. Mine is referred to as Limited Wegs because my kidneys have been unaffected.

[BARON]

Hi all D and i went to see the kidney specialist yesterday and he wants to do a bi ops unfortunately D has kidney involvement it seems unreal that from been diagnosed from January this year to now how much aware lives have changed the one thing i will say tho we have been very lucky to have the specialists we have i can not praise the ent doctor enough for putting us down the wright path as it has made all the difference to reducing the effects throw early involvement as Jack said due to slow reaction he lost his kidneys D hopefully due to quick reaction to the problem should be ok .Hi Deb welcome to a great place the people on her are full of knowledge on this disease and they all have a great sense of hummer