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Terri
05-07-2009, 09:39 AM
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
05-07-2009, 10:04 AM
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
05-07-2009, 10:46 AM
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
05-08-2009, 11:35 AM
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. :confused:
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
05-08-2009, 11:47 AM
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
05-08-2009, 11:50 AM
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.

Luce
05-09-2009, 10:57 AM
I'm a little bit concerned that you're taking both Immuran and Bactrim together as I was told they often react when taken together.
Just a thought but could it be a reaction between these two drugs causing your shortness of breath and wheezing?

pberggren1
05-10-2009, 08:18 AM
Luce, where did you hear about the Imuran and Bactrim interaction? A doctor?

Luce
05-10-2009, 07:49 PM
I was on cyclophosphamide and bactrim for 3 months when my doctor switched me to Imuran. When I get new drugs I always read the leaflets inside and co-trimoxazole (Bactrim/Septrin) was listed as something that may well react with the Imuran (azathioprine).
So I phoned my doctor who advised me to stop taking the Bactrim whilst on Imuran, I wasn't given any substitute though.

So I thought maybe Terri is encountering these two drugs reacting....

Sangye
05-10-2009, 11:35 PM
Bactrim is an odd drug-- interacts with everything, it seems. I see it all the time on my leaflets, too! I've asked my docs, and for the most part it just means they have to be aware, but it is possible to use it with the drug. I have no idea if that's true for Imuran, though, since I've never been on it.

coffeelover
05-11-2009, 02:19 AM
Terri,

I have some days where my breathingis more problematic and other days where I feel like I am breathing perfect! Every time it becomes somewhat of a problem, I get scared that I will have this trach in forever! But then it seems to subside and I get positive again. The breathing issue is definately aformof WEGS and becomes unpredictable and I have now chosen to notworry so much about it and go with the flow. When I go to the ENT theendof this month, IF they tell me my trach will need to stay in longer, then so be it. I will be somewhat dissapoointed, but know it is in my best interest. My life if full and busy and I am not letting a little trach slow me down!!!!

Breathing is good today btw
LIsa

Terri
05-11-2009, 12:14 PM
Thanks Luce.
I'll check with my Dr. on that drug interaction.
The wheezing isn't real bad and not that I would consider it life-threatning.
I actually notice it when I lay down to go to sleep and then I have to toss from side to side to get comfortable.
Lisa, I wish you the best with your trach and hope you can be without it soon. Thanks for the helpful info.

Sangye
05-11-2009, 12:15 PM
Terri, you might have sleep apnea, if your breathing changes when you lay down. Good idea to mention it to your doc. I never snored until I gained pred weight. Now I actually wake myself up!

I tried to do a sleep study a couple years ago, but the place was awful and I've been afraid to try again. My JHU doc insists the JH sleep clinic is excellent, but it's a big deal for me to find an overnight dogsitter and get to Baltimore at night, etc.... Mostly, I'm just chicken.

Terri
05-12-2009, 11:19 AM
Hey, thanks Sangye. I never would have thought of sleep apnea but I guess that could be it. I too wake myself up sometimes from snoring.
I certainly will mention it at my next Dr. visit.

fester500
05-12-2009, 08:00 PM
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
05-12-2009, 11:53 PM
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
05-13-2009, 09:08 AM
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.

coffeelover
05-16-2009, 01:32 PM
Hello Fester,

The Cloroquine took hold almost within the first month for me. My "traveling pains" as I called them, were non existant on the cloroquine and as far as I remember it was soon after taking it.
After being diagnosed with WEGS I too was taken off the cloroquine.

Sorry it took me so long to get back to you.......haven;t been on the computer for a while. Missed it.
Lisa

fester500
05-19-2009, 01:24 AM
Thanks for the replies!

DuaneHart
07-31-2009, 07:03 AM
Greetings all--
I just got out of the hospital on Sunday after being admitted Friday morning with high fever, vomiting, etc, etc. I had been on 20mg prednisone and had just started Imuran at 50mg about 2 weeks ago and was to increase imuran by 25mg each week until I reached 150mg. Had some vomiting after starting the Imuran but was nothing I couldn't handle. My doctor told me to stop the Imuran for a few days, increase the prednisone to 40mg. That was on Monday July 20. She told me to continue the prednisone at 40mg, resume Imuran at 25mg thinking that starting at a lower dose and tapering up I would be able to handle better. Took my Imuran 25mg Thursday night July 23 at bedtime and woke up Friday morning with high fever, vomiting etc and was admitted to hospital. I also had HUGE outburst of Vasulitis lesions on my legs--some were 3-4 inches in diameter. I am now off the Imuran and my team of doctors is discussing what the next course is. I meet with them Friday for education on two different meds they may begin, Cellcept being one of them.
Just a little more background---I have Crohns disease, Ulcerative Colitis, and heart issues. I am currently taking 17 different meds daily. I need to get things under control. I have total trust in my doctors here at Mayo in Rochester. I just seem to have a big laundry list of health issues. I do not seem to have the sinus, respiratory problems that it seems that most of the other people here seem to have. Mine is mainly the skin problems and feeling like completely sh***y all the time. Can anyone relate to this?

Sangye
07-31-2009, 08:50 AM
I also had HUGE outburst of Vasulitis lesions on my legs--some were 3-4 inches in diameter.
I've had those. Awful. They took a long time to heal, mostly because I was sensitive to all the wound dressings.... If you get stuck, I have suggestions that worked for me.


I meet with them Friday for education on two different meds they may begin, Cellcept being one of them.
Cellcept is a breeze. I was on it 2.5 yrs and will probably go back on it after this ctx is done. It worked great and had almost no side effects.


I am currently taking 17 different meds daily.
*Gasp*


I have total trust in my doctors here at Mayo in Rochester.
That's good news. They have a great reputation there.


I do not seem to have the sinus, respiratory problems that it seems that most of the other people here seem to have. Mine is mainly the skin problems and feeling like completely sh***y all the time. Can anyone relate to this?
Yup. I don't have any upper respiratory stuff either (sinus, etc...). Mine is all lungs, joints and skin. The skin is doing okay now. I feel lousy all the time, too. Things can improve. The fact that your Wegs isn't affecting more areas bodes well for you. They'll figure out what to do. :)

Doug
07-31-2009, 12:56 PM
Duane- In time, you probably will feel better, maybe even great! Continue to have a positive attitude, feel good to know you are receiving treatment at a respected WG treatment institution, and try to be patient with the course of your disease. Each person is unique in how the disease affects him or her, and that means anything we tell you, as weggies, reflects our personal experience but may not, ultimately, reflect yours. May your aches and pains be fewer tomorrow than they are today! :)

Gwenllian
09-08-2009, 07:36 AM
Just posting to say that initially, I didn't have tracheal symptoms when I was first diagnosed, - my tracheal stenosis came apparent a few years later, although it was misiagnosed as asthma for 7 years, which was pretty miserable. If in doubt, get it checked out with ENT xx

Doug
09-08-2009, 10:17 AM
Gwenllian-

Because you were misdiagnosed for seven years with asthma, can you suggest anything that might help others avoid that problem? Did your ENT know you were a weggie, for example? Did the possibility that your "asthma" might be tracheal stenosis occur to you? Did you bring that possibility up with your ENT? What was the doctor's response? I know some doctors don't like to be out-guessed by patients! Was the doctor an ENT, for that matter, or a GP or other specialist? Having been through that wringer, what would you recommend to other weggies with breathing issues to avoid misdiagnosis? I think I understand the symptoms, but I just can't imagine how miserable you must have been until your doctor got the diagnosis right! It's a bit distressing to learn that what didn't hit you (or us!) the first time around might the next time, though I guess I realized that possibility existed. :confused:

jola57
09-10-2009, 09:47 AM
Gwenllian change your signature to "happy momma of 3 babies", you are an inspiration to all the young ladies comming onto the forum

Gwenllian
09-11-2009, 12:10 AM
Gwenllian-

Because you were misdiagnosed for seven years with asthma, can you suggest anything that might help others avoid that problem? Did your ENT know you were a weggie, for example? Did the possibility that your "asthma" might be tracheal stenosis occur to you? Did you bring that possibility up with your ENT? What was the doctor's response? I know some doctors don't like to be out-guessed by patients! Was the doctor an ENT, for that matter, or a GP or other specialist? Having been through that wringer, what would you recommend to other weggies with breathing issues to avoid misdiagnosis? I think I understand the symptoms, but I just can't imagine how miserable you must have been until your doctor got the diagnosis right! It's a bit distressing to learn that what didn't hit you (or us!) the first time around might the next time, though I guess I realized that possibility existed. :confused:

My experience was quite extreme really. I experienced awful breathing difficulties since i was 18 years old, but i was continually diagnosed with asthma. I told my consultant at the time that i did not think i had asthma, but i was constantly dismissed. I even took family members to my doctors appt to back me up, but to no avail. I looked up tracheal stenosis up on google in the end, and thought I might have that - BUT STILL, my consultant said I had asthma. :mad: My doctors even refused to believe I was having a flare up of Wegeners, and I was left untreated until 2006!!!! :eek:

Eventually, in 2005, when I became pregnant - my breathing difficulties got so severe, that I was admitted to hospital. It was actually an anaethatist who listened to my chest and said 'that's not asthma' and within hours, I was having emergency surgery to save me and my baby's life, who was born prematurely as a result.

I was so devestated and angry by the time i was correctly diagnosed, that i took the decision to take legal action for negligence against the hospital - for which i subsequently won the case, at the high court in london.

I really hope that increased awareness about Wegeners stops that kind of thing happening to anyone else xx

Sangye
09-11-2009, 01:05 AM
Wow, I am so happy to hear you took legal action. That was so far beyond negligent.

(BTW-- love your new signature!)

Doug
09-11-2009, 01:15 AM
My experience was quite extreme really. I experienced awful breathing difficulties since i was 18 years old, but i was continually diagnosed with asthma. I told my consultant at the time that i did not think i had asthma, but i was constantly dismissed. I even took family members to my doctors appt to back me up, but to no avail. I looked up tracheal stenosis up on google in the end, and thought I might have that - BUT STILL, my consultant said I had asthma. :mad: My doctors even refused to believe I was having a flare up of Wegeners, and I was left untreated until 2006!!!! :eek:

Eventually, in 2005, when I became pregnant - my breathing difficulties got so severe, that I was admitted to hospital. It was actually an anaethatist who listened to my chest and said 'that's not asthma' and within hours, I was having emergency surgery to save me and my baby's life, who was born prematurely as a result.

I was so devestated and angry by the time i was correctly diagnosed, that i took the decision to take legal action for negligence against the hospital - for which i subsequently won the case, at the high court in london.

I really hope that increased awareness about Wegeners stops that kind of thing happening to anyone else xx

Yours is an amazing story! A suit doesn't save you and your middle child the suffering you went through, but I hope the suit serves as notice to health care providers there that half the team is the patient. Whew!

coffeelover
09-14-2009, 03:10 AM
WOW Proud MOM! I am sorry your tracheal stenosis was misdiagnosed. I too suffer from tracheal stenosis and after having a trach for "too Long" 7 1/12 months I know what your breathing difficulties were like.

Each day I talk a walk up a very steep hill just to prove that I am now breathing again. It is such a treat to have the luxury of air. I have recently been told that my WEGS is still active, although I feel great, but the stenosis is a constant worry for me. I will go back to see my ENT just to be sure. Your story helps me know that I am doing the right thing.
As someone stated in an earlier thread.....(sorry I have not been on for a while and I am trying to catch up) this disease can be lonely.

Thanks to all of you who share your stories with both successes and set backs. It's nice to know others are in this with you.

LIsa coffeelover

jola57
09-14-2009, 04:34 PM
Gwenllian, I am glad that the anesthetist did the exam and noticed no problem in the lungs I know that my hubby does a thourough exam of both the lungs and airway along with a detailed medical history before every procedure. Our youngest son is now into 3rd year medical studies and having me as his "mentor" I try to have him talk to his friends about listening to their patients when doing an exam and piece together symptoms that do not make sense. I often wandered why physicians take so long to diagnose autoimmune diseases when practically all of us sufferers present with a multitude of simillar complaints. One would think that AI would be the first diagnosis out there. What I noticed thru his studies is that the medical schooling greatly lacks in coordinating between specialists and almost never teaches the young med students how to properly interpret someone with specific but not presenting at the same time ailments. I hope that somewheres in the near future there is going to be a strong lobby from the John Hopkins and such all over the globe to strongly address this inadequacy and make sure med students are thought how to recognize the signs of autoimmune diseases quickly.

Doug
09-15-2009, 02:00 PM
Ah, Jolanta! Our inside person! Your perspective on how the medical professionals deal with AI is interesting, and reflects on how most on the forum have experienced doctor's care.

I was fortunate that the Physician's Assistant (!) who took care of me the first five days recognized that the non-response to heavy doses of antibiotics and the infiltrates in my lungs suggested AI, and he turned me over to a doctor (pulmonologist) who ran the tests and biopsies that he correctly diagnosed as severe WG. From the start, this pulmonologist was in consultation with the rheumatologists and nephrologists at the University Hospital-Denver who ultimately got my carcass, then brought me back to life.

Maybe we need to construct a manifesto, outlining the patient's point of view for AI patients, then send it out to teaching colleges pumping out tomorrow's doctors.

jola57
09-18-2009, 02:52 PM
Doug with the starting of offices using computers and computerized data maybe a time will come when finaly all the symptoms will be taken, checked on a screen and voila - here come the diagnsis. All the relevent historical medication data, diagnosis and hospitalization will be right there. One day and there you have it folks, your quick and painless diagnosis.:rolleyes:

Doug
09-18-2009, 03:22 PM
Jolanta, I'm starting to see more and more IT services in use in even small American hospitals. The regional hospitals here have started to standardize their IT systems so medical records are more easily accessed for out-of-town, even in-town patients (within the hospitals' service areas, of course). It seems that was one of the Obama administration's objectives, too. How are Australia, UK, and Canada doing on some sort of nationalized database of patient histories? Even the small scale changes where I live means less time filling out duplicate histories every place you check in.

jola57
09-18-2009, 03:47 PM
Canada is somwhat backwards still, we have the IT but with our privacy act it is complicated. if you are in the same health region, yes you can access patient info but if you go to next region, no luck, you must take the if with you, oh they will electronically transfer but still it takes time

Doug
09-19-2009, 01:17 PM
I'm not sure what privacy controls are on the records, but there are considerables efforts taken these days to protect patient privacy. I noticed in our local hospital that the white board where they have patient assignments and dietary restrictions noted, they use only patient's initials instead of full names now.

As far back as when I was taken to the hospital before they knew what I had (December 2003), I was asked several questions at the emergency room. I was on heavy oxygen, my heart was banging out over 200 beats per minutes, my kidneys were trying to shut down, and I managed to tell them I didn't want my name in the paper or any visitors. At that point, they wouldn't have allowed me any anyway! I managed to clamp information so tight on my admission to the hospital that they wouldn't even tell my family (!) if I was there.

A friend with significant IT skills broke into the hospital system and located my room number and room telephone number for my family, or they'd never have heard about me. Considering the state they'd seen me in being carried out to the ambulance, they had reasonable concerns if I was even alive (!), so this stealthy fix on my room telephone number in particular proved most helpful. Later, I understood what I needed to do to assure the right people had access to me.

Sangye
09-19-2009, 02:08 PM
Doug-- are you a covert CIA operative? Or just shy? :p

crackers
09-19-2009, 06:19 PM
the name's bond....doug bond.
john

Doug
09-20-2009, 07:15 AM
No, I wasn't the operative, it was my friend the Masked IT Bat-venger! I know her identity because of characteriastic rings she wears on all individual sections of her fingers (sort of a silver and precious gems brass knuckles....), but I pretend I can't figure out who she is because that's the way of comic book characters (think Clark Kent's glasses).:)