Tracheal Stenosis

[Terri]

Hi All,
I've been reading through past posts and was wondering about the tracheal stenosis?
Several people have to deal with this problem.
Is this something that comes along early in Wegener's or does it happen later, or at any time? I have a feeling this is something I have to look forward to.
Also, I seem to suffer more aches and pain when the weather is damp. That is also when I become more sensitive to everything and get upset more easily.
Do others feel this way too?
Just trying to find my "normal"

[Sangye]

Hi Terri,
I'm learning that there aren't any definites when it comes to Wegs. Some people develop trach stenosis right away, others later, others never do.

We can't even rely on statistics that much, since there's not much research done, and there are so many going uncounted or undiagnosed, etc....

Though uncertainty usually drives me nuts, with Wegs it's the only thing we can be certain of! I try to use the uncertainty to my advantage-- to focus on what's happening right now, not what might happen. Otherwise, we'd be dying a million deaths, you know?

[coffeelover]

Terri,

My first and primary symptom was tracheal stenosis. I still wear a trach and have now for 6 months. Although I am hoping to get the trach out sometime this summer, I would rather be able to breathe and have come to the acceptance of having the trach. I waited far too long to be diagnosed.
I was the same as you in that I had aches and pains (I called them traveling pains) and they were the worst during weather changes or
when the weather was "damp". I went to see a rheuamtologist many years ago and he put me on a NSAID. For years, I took his advice and still suffered from these pains. Eventually, I got smart and sought out another rheumatologist and this time I found a good one. She, at that time diagnosed me with palendromic rheumatism and the symptoms of this disease were very similar to mine at the time. She put me a a maleria med called hydrcloriquine (sp?) and for 2 years I took that. This Hdroclor med helped make the pains that I was originally feeling go completely away, so when I started having breathing problems last spring, I never thought to consult with my rheumatologist. (I was only seeing her about once every 6-8 months as my "problem" seemed under control.....my choice, not hers)
I have always suffered from allergies and I just ASS U ME d that it was a particualrily bad year and that I had maybe developed some seasonal alleriges as well. WELL, I could not have been more wrong! After MONTHS of not breathing and actually passing out at times from climbing stairs or a hill, I finally went to see my ENT who took immediate action. After my surgery I went to see my rheumatologist and she was angry with me for keeping this from her and immediately took the tests necessary to diagnose Wegeners.
So that is my story. If you are experiencing breathing difficulty, go get help now!!!! I am not sure why you think you may end up with tracheal stenosis, but please do not mess with it. I now realize how serious my situation was. I know now that Wegeners diagnosis is difficult for even rheumatologist to see from the onset of symptoms. I think I have had symptoms slowly and in small increments for over 15 years before the stenosis made me get serious about a diagnosis. I am so grateful that my current rhuematologist was well aware of the disease and that my ENT's were both procactive in fixing my situation.
I am currently feeling very good. I am on MXT and PRED and a host of allergy and other meds reaching towards remission. I now know that as good as I feel now, even with a trach still in, that I was in pretty bad shape last year at this time.
What other symptoms do you have with WG? SAngye is very knowledgable in this disease and she is right in saying that the only thing that is a for sure with WG is that there is NO FOR SURE.
Wishing you well. Any more tracheal stenosis question....ask...I consider myself an expert in that category.
Lisa

[Terri]

Thanks for the replies.
For sure, Sangye, I certainly don't want any new problems and not looking for any but I want to learn all I can from others about this disease.
I've been fortunate as to not have what most people seem to be going through. I'm hoping it is because my W.G. was caught early and maybe the meds will keep it under control.
I've had some trouble with breathing after physical activities,climbing stairs,etc.. but have contributed that to my weight gain.
I have appt. tomorrow to have ct scan of chest to see if any nodules are lingering. Have had some wheezing, but then again, I like to think it is because of my weight gain.
I'm taking 5 mg Prednisone, 100 mg Imuran and Bactrim 3x a wk.
I'll report back after I know anything.

[Sangye]

I hope everything goes well with your visit. Weight gain can sure cause a lot of problems! Being immune-suppressed, it's possible your wheezing might be due to seasonal allergies. It occurred to me today that might be contributing to my difficulties lately, too.

[Sangye]

I also don't have a lot of problems directly from Wegs. Symptoms, yes, but not the extensive damage others on here have. I do have a lot of other complications that are rare and problematic. All this time I've been thinking I had a bad case of Wegs. Now my docs are saying the Wegs is behaving itself, but it's been a bad case of drug and disease fallout. Thank goodness for Wegs specialists. All my other docs were always acting like it was the Wegs.

[fester500]

Hello!

I'm new on here, but I was diagnosed in 2003 when I was 15. This is my first post so I hope I do it right!

I have a question for Lisa. I, too, have been put on Hydroxychloroquine to try and control my arthralgia. I've been flaring since September and haven't responded to more cellcept, pred or rituximab. The decision to give me hydroxychloroquine was a joint one between my nephrologist and immunologist. I have been on it for six weeks now though and haven't noticed any difference! How long did it take for it to work with you?

Thanks!

[quote=coffeelover;2441]

She, at that time diagnosed me with palendromic rheumatism and the symptoms of this disease were very similar to mine at the time. She put me a a maleria med called hydrcloriquine (sp?) and for 2 years I took that. This Hdroclor med helped make the pains that I was originally feeling go completely away, so when I started having breathing problems last spring, I never thought to consult with my rheumatologist.

[Sangye]

Hi Fester,
Welcome! I don't have anything to add about the hydroxychloroquine other than 20 yrs ago I was in the Peace Corps in Africa and had to take chloroquine as a malaria-preventive. However, I was one of the first foreigners in the country to develop chloroquine-resistant malaria, and nearly died while they tried to figure out a treatment. I enjoyed malaria 2 more times, and had "mini" malaria for about 10 yrs after I left.

There's some weird correlation between autoimmune diseases and malaria. Not only does chloroquine work for some, but a history of malaria can cause a false-positive Rheumatoid Factor (one test for Rheumatoid Arthritis). My RF was always negative after Africa, and when the Wegs symptoms started, it went positive.

Lyme Disease does similar things to the immune system, too, and can trigger AI diseases. Oddly enough Lyme infection often occurs along with another parasite that closely resembles the particular form of malaria I had.

All this spelled major confusion for me in my pre-diagnosis days. My dog had had Lyme Disease and had died from symptoms that, on reflection, look exactly like Wegs. I tested mildly positive for Lyme, and initially responded very well to a wholistic Lyme protocol.

One of the naturopaths who worked with me in the pre-diagnosis period told me, "Someone should study you." All joking aside, they could probably unwind the whole mess, since I have links to malaria, Lyme, chloroquine, and Wegs.

For someone who didn't have anything to say, I've said a lot. Sheesh.

[jola57]

Hi fester, at the beginning of my illness in november of 2006 they mistakenly diagnosed me with polymyalgia rheumatica and one of the drugs given to me was chloroquine, the moment that WG was diagnosed Chloroquinine was stopped.