Tracheal Stenosis

[coffeelover]

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]

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]

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]

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]

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.

[coffeelover]

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]

Thanks for the replies!

[DuaneHart]

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?