Sounds like a plausible theory Sangye. Are there any blood tests that could be used to diagnose if this is happening? I am guessing that levels would fluctuate so much that test results may not make any sense.
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Sounds like a plausible theory Sangye. Are there any blood tests that could be used to diagnose if this is happening? I am guessing that levels would fluctuate so much that test results may not make any sense.
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Sangye. Copy/pasted your second post into the
>Forum>Wegener's Talk>General WG Chat>Links to Wegener's Granulomatosis Resources
Section of the forum. Hope you approve of this.
Deanne H
That is wonderful news, and you can look forward to a better future doing what you do best....
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Yay!!!! thumbs up, 5 stars, maybe even some light at the end of the tunnel.
I am sending lots of hugs your way. What great news that you are making some headway. Every step forward is a reason to celebrate. I needed some good news tonight, my house is unusally quiet, had a bit of a tough day today, i was having lunch today and my front tooth crumbled into my food, i just sat there and cried, (dentist had pity on me and i get it fixed in the morning), my chest has been playing up again since i had the flu shot, nearly 8wks ago, not sleeping well, fatigue & my sister is going away for 6mths & i am over it, and my tooth was the proverbial straw that broke the camels back. Your small victory, in a funny way, we all share in,
Thanks for the info explains a lot about how my body reacted to the low doses of pred. Thanks once again, you are an angel in disguise.
sharon
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Sangye,
Glad tp here there is some light at the end of this dark tunnel i seem to be in....Does Dr Seo include trach stenosis as part of the sinus group...I can only find poor prognosis with WG and tracheal stenosis??/ Can you offer any information in that area...I am still trying to get approved for Rituxen.....I hope your adrenals kick in soon...it can very fustrating when you know your body and no one will listen ...Thanks for the info on prednisone....I hate it but have no choice but to take it for now...and the methotrexate makes me sick for 4-5 days then I am ok for 2 til I have to take it again...I am hope rituxen will be my way to remission...Have a good day...Thank you for educating us...I am so scared and really have no one to share with..I am so glad I found this forum
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Yes, there are blood tests that measure adrenal function (AM cortisol) but I can't do them. They require you to be off all pred for 2-3 days. I saw a JHU endocrinologist last fall once I was on 5mg pred. I was doing so poorly on it and felt it was destroying what was left of my adrenal function. Unfortunately, my lungs were still hemorrhaging and there was no way I could stop the pred for a few days to do the blood work. He was polite about it but insisted my adrenals were fine.Originally Posted by Jack
In 2007 after being off pred a couple months, I was hospitalized for mtx-induced pneumonitis. One of the docs ran an AM cortisol that showed "undetectable" levels of cortisone (ie, insufficient adrenal function). Despite sharing that with all my docs since, none of my docs believed it could be possible that I was still alive and had no detectable adrenal function. I asked for a repeat test during many hospitalizations, but it never got done.
After your adrenals have been severely damaged by pred, there is a pred dose that supplies what your adrenals cannot. Above that, the pred depletes your adrenals and you feel awful. Below that, your adrenals don't have enough to function and you feel awful. The MDs acknowledge the "too low" part, but they don't understand that too much depletes the integrity of the adrenals. They just see the side effects, but not the deep levels of damage.
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Reading other people's good news on here does the same for me. We're all sort of out to sea with Wegs, and each time someone gets good news it's like seeing a rescue ship in the distance.
I'm so sorry for what you're going through. Hang onto whatever ray of hope you can grab on. It always helps to remind myself that everything changes, and that a large part of the depression is due to pred's effects on the endocrine system. Too much or too little pred and you can't stop crying. Yesterday was the first day back on 2mg pred and I didn't cry or feel hopeless all day. Just the day before I was completely despondent.
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Unfortunately I have no idea about tracheal stenosis. Jan's your gal on that one. She's done incredible research and has picked Dr Lebovic's brain to bits.
I know that Dr Seo would not include TS with sinus issues, though. Sinus is very common and TS is not, and they seem to function very differently.
It saddens me to hear how scared you are. Please post your questions, comments, fears and whatever else so we can help you. You don't have to go through this alone. I also recommend seeing a therapist. Mine have sure helped me cope with the constant fear and uncertainty and everything else in the fallout of Wegs.
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In Dr. Lebovics ENT group, he would treat subglottic (right below the true vocal chords) but not tracheal (this for him would be third ring or below-- he will do the top two rings, like he did for me) stenosis. For that he goes in with a thoracic surgeon. He actually used to go in alone but he said that having the chest guy there yields a better result (and my sense is that it's trickier to do as well so the two surgeons are a benefit). LisaMarie -- do you truly have no subglottic involvement at all? That would make you somewhat unusual for a wegs patient I think, and I'm not sure if the treatment for TS is slightly different than SS -- for one thing it seems like they would have a smaller space to work in -- your subglottic is completely exposed once they reach your vocal chords -- I'm not sure that they can see your entire trachea without a bronchoscope and putting you under (I think that's right). I also thought the tracheal piece was more common in relasping polychrondritis (has that been ruled out in your case) as well as sarc (which is easier to diagnosis than WG, as I understand it).
I guess that the important piece to understand, as it was explained to me, is that medications will not fix, or have an impact on stenosis. It really needs a surgical intervention. Frankly, of the people I've seen on this board, their inventions have been all over the map, based on surgeon, location, methods, etc. I only know what Lebovics does, and have been very satisfied thus far with the result. There is no sense that I will need 15 or 20 of these procedures over my lifetime (as some have had). I am seeing him today but believe that I am still fully open -- it doesn't feel different at all. And I remember the feeling from when I first started having shortness of breath in 2005.
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Good luck today, Jan. I hope he says your trachea is still looking great.
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