Couple Questions - Another one for Jack :)

[Brooke]

I read in a previous post about colon involement? What are symptoms of that? How is that treated?

Jack - I remember you saying that you can not sleep for more than 2 hours with out being woke up by a cough. Do you cough a lot during the day also or mostly at night?
The reason I ask is that I cough a lot a night - I think it is from laying down. I think I will try and sleep in a recliner to see if that helps me any.

[JanW]

I can't remember Brooke -- did the docs ever figure out why you are coughing so much?

What I've read on Dr. Google seems to indicate that WG in the colon presents sort of like colitis -- bloody diarhhea, cramping, constipation and the rest of it. Uncommon in WG though, as the most common presentation tends to be in the ELK formation (which is how med students remember in). E(ear, nose, throat), L(lung) and K(kidney). Everything else is rarer still in an already extraordinarily rare disease, but I have even read about WG being discovered after biopsy of a breast lump! Its a systemic disease -- can literally be almost anywhere.

[Jack]

I suspect that I have a similar tendency to cough day or night, but it is different when I go to bed. At night, I tend to wake every few hours and cough for a short period. During the day, I may go for five hours without coughing, but then have a giant coughing fit that is hard to clear! I also find that I have a coughing session if I change position - sitting to laying or turning over to lay on my other side.

[Brooke]

Jan - I just had a recent CT of my chest done and that looked good. I think the reason I cough is due to the Wegener's. My docs also say I have asthma, I don't know if they still believe that or not but I think it is just from the Wegener's. Thanks for the info on the colon part.

Jack - Have you tried to sleep in a recliner? I am wondering if you try to sleep upright if that will help. I am the same way, I can go almost all day without coughing - even if I am a little wheezy but shortly after I am laying down I start coughing. I am thinking my sinuses are draining or something because I don't know why it would be worse at night.

[moyan]

Hi, since a year back I sleep in my recliner. Much easier on the breathing even though I don't cough, but have nose backdrop (?)

[JanW]

And they've ruled out any kind of throat (subglottic, tracheal) involvement? Very common to cough with those because you are always trying to clear your (very small) airway. You wouldn't have a definite on airway involvement unless you've been scoped, or been CTed in the throat (chest will usually only get the lower part of the trachea.

[Brooke]

Jan - Yes I have subglottic stenosis, I didn't realize that causes you to cough too.

[elephant]

Jan after reading your posts about your SS, I asked my ENT about checking my throat ( subglottic and tracheal) and he stated that I would of known about it when I did your sinus surgery. The anesthesiologist would of told him if they had a hard time traching me. So I am relieved to hear that.

[JanW]

It's true that if they needed to intubate you that they would have encountered resistance had you had any scarring. It's just also a good idea that since you've had sinus involvement, you stay on top of the throat as well. He can actually just go a little past your sinus passages, which they do anyway, and see straight down.

[JanW]

Brooke -- that's right, I remember now that you are the person who is about at 80 percent in terms of windpipe. Absolutely that can make you cough (and constantly!). What I would wonder is, if you are suddenly experiencing increasing coughing, whether your stenosis is actually getting worse. When is the last time you had it checked? I would worry that something has gone unstable -- scar tissue can shift for instance, which is one reason why the operate to when it gets as bad as mine. I would have the ENT investigate..are you finding yourself any more short of breath? What you said about sleeping in a recliner rather than lying all the way down -- sure it's not a little harder to breathe when you're flat?

[Brooke]

I remember after my first sinus surgery that the anesthesiologist or whomever had to intubate me - had to use a smaller device because they could not get the tube in. That was before being diagnosed.
Jan - I will have to make an appt with my ENT or actually I will be seeing ENT when I go back to Mayo at the end of the month so I will have them check it out. I will also be getting another bronchoscopy so they will see then too.
I don't think it is harder to breathe laying down, I will have to see tonight when I go to bed!

[JanW]

If you're getting another broncho they will definitely check it all out. I just know how insidious this disease is, so now I am becoming the SS nag! (I will leave Sangye the title of WG specialist nag, along with a few others). All along I've been compensating (easy to see in retrospect, but while it's happening you're just living your life)...I still wouldn't have been to a doc about any of the WG symptoms even the shortness of breath. It just wasn't that bad to me but the doc was pretty horrified at the level of "disability" in terms of breathing that I have been living under. Yet this isn't uncommon in his practice at all.

[Sangye]

I am becoming the SS nag! (I will leave Sangye the title of WG specialist nag, along with a few others).
Yes, we should all specialize in our nagging.... LOL

It does help to have direct experience. Jan you really know what it's been like not having an SS specialist. I and others have learned about the importance of having a Wegs doc in general.

[JudyJ]

I hope it is OK to respond here and ask a question as well. I did not know colon involvement was unusual. When I first go sick in 1995 I had colon involvement as well as the whole digestive tract. Mouth on through. The first couple of weeks in the hospitol all I had was cream of wheat and split pea soup when I could even handle that. Water was even painful. To this day I can barely stand cream of wheat or split pea soup. After several months I was able to eat normal again. The main attacks were to my kidney. I do have a question though. This throat sinus stuff is sort of new to me. I see my Rhematologist this week so I will hopefully get some answers then. This time when I got sick I had terrible pain on the left side of my face. I saw an ent dr only twice. He does not know much if anything about wegeners but felt as long as I was being treated for the disease that I should be OK. Well about 2 weeks ago I started having a numbness in my throat and tongue on the left side, almost always odd sensations and/or ringing in my left ear. I called my md and he said to wait to see what the Rheumy had to say and if needed he would refer me to an ent again. So does this sound like anything any of you have gone through. I am pretty ignorant on this stuff. I am more familiar with the lung and kidney thing even at that It has been along time since I was sick.

[Jack]

Hi Judy,
Although not exactly as you describe your symptoms, a lot of people on here have ear involvement associated with eustation tube trouble. This can affect you from your ear, right down to your throat so my guess would be that you are experiencing more Wegener's symptoms. Unfortunately there does not seem to be any easy cure for this one. :(

[elephant]

Hi Judy, welcome! Don't mean to come on strong but do you see a Wegeners specialist? With numbness to the throat, you might want to see a Neurologist and get a MRI of the brain. It's very rare but I have read/heard that you can get granulomas in the brain. I too have sinus/lung/ear/eye and other involvement secondary to WG. I never had numbness to the throat. Hope you get your answers soon.

[JanW]

I agree with elephant that you need to see a specialist. At least start with the ent since it seems to involve the throat. A rheumy really isn't going to be qualified to go in depth into problems in that area.

[Sangye]

Judy, your rheumy this week should order an MRI of the brain and upper cervical region. Numbness on one side of the tongue and throat suggests cranial nerve involvement (nerves that originate in the brainstem). Wegs in the central nervous system is rare but not unheard of. Probably about as rare as Wegs in the colon. (Though I've never heard of anyone with the entire GI tract affected as it was for you.)

When you see your rheumy, please bring his attention to the numbness. That is NOT a typical Wegs symptom in that area. If it is CNS Wegs, it can become life-threatening quickly.

Have you noticed slurred speech, biting your tongue, difficulty chewing or swallowing? Any weakness in your face, neck, shoulders? These are questions your doc should ask also.

[JudyJ]

Thanx so much for all your input. I almost feel new at this. Ok third time is a charm. I have tried to answer this twice now and my soon to be one year old granddaughter has decided to help out so I will try to before she can help again.
Sangye. I know then and now I have colon involvment ,but thinking back 15 years may as well be 100.......... I remember testing positive for some virus that attacks an abnormal immune system. Can't remember what it is now. That could have something to do with the mouth and stomache so I could have been wrong there. I don't really remember now. Guess I should check that out. I do remember my very first diagnosis was chicken pox. Went down hill from there. I seem to be aware of the numbness on my tongue and throat some times more than others. Today does not seem to be as bad. A little on my tongue and cheek. Other times I feel like I am tripping over my tongue but it is never totally numb. Today I actually feel pretty good. Oh yes I have plans to have quite a chat with the Dr. don't know if I am ready to wrap my brain around any involvement there.
elephant Good question! I love my rheumatologist but I don't know if he is truely a wegs specialist. When I found out it was not chicken pox. I was sent to Sacramento to Dr.Shapiro who specializes in life threatening diseases so I just assumed he was. I spent 2 weeks in the hospitol there having almost every part of me biopsied. I know he consults with other Rheumatologists I think he has even mentioned names but I guess I did not pay much attention. My rheumatologist, primary and pulminary are the only drs. I see regularely right now. Next week i have a pulminar function test and another ct but the Dr. seems to pretty positive they should be good.
I am not an agressive person but I will really try to keep on top of all this.

[elephant]

Judy, I know having WG is so overwhelming that you want to eat a dozen crispy creme doughnuts and call it a day. Judy you will get there in the aggressive department. I saw my new primary doctor today and I like him. He was on top of stuff and I didn't have to say," did you order this and blah, blah...I was like Yahoo, got a doctor who is very good!

[Sangye]

Judy, you would know if your doc is a Wegs specialist. There are very few of them in the world and they know this disease inside out.

Though it can be overwhelming at times, you've definitely got to stay on top of this. Your life literally depends on you taking note of and conveying new or changing symptoms to your doctor. Wegs is unusual compared to many diseases (eg cancer) because symptoms are often more revealing than any of the diagnostic tests. So it's very important for you to organize yourself and stay on top of your case. With a diagnosis of multi-system Wegs you've got to hit the ground running.

[snooz23]

Judy,

I had quite a bit of numbing of the throat/tongue pre-dx. I have had all kinds of MRI's, CT scans of brain, sinus, head, lungs, etc. None of them showed anything neurally? wrong so not sure what it was. Have not experienced it since being dx. in Sept. and starting treatment. However, many previous symptoms did return and I am now switching medicines. My main presentation was severe hearing loss.

[JudyJ]

Snooz23, Thanks for your info. I was trying not to panic. I see the dr. sat. and will talk to him then. I was seriously thinking of taking and out of mind out, of body vacation and just vegg. HA!!!! There is that denial thing again.
JudyJ

[jola57]

Snooz23, I have been on cyclo and mtx now for over 3 years but just about a month ago I experienced just what you described - numb like feeling in the back of throat and tongue area. Strangest feeling ever. Tingly somewhat like just before the freezing peters out after a tooth job. Hearing, same one ear 35 the other 75% loss and tinitus now in both. So I guess yes to both for symptoms of Wegs.

[elephant]

I wonder what that is all about the numb feeling? Is it a side effect to the medicine? Is it active Wegeners? I will have to live with the tinnitus for the rest of my life. Nonstop ringing!

[pwc51]

At the onset of my Wegs I went very deaf - within a day of diagnosis and starting on high dose prednisolone my hearing miraculously returned. I had been deaf for several weeks and had tinnitius too! I still have an underlying sinus problem but it is negligible compared to the deafness!

[Jack]

There are quite a few posts on the forum now suggesting that increased pred will cure the tinitus and deafness, I've also found this to be the case. However, It's not really the long term answer is it?

[Sangye]

Jack, I'm not sure what you mean. Do you mean it's not the long-term solution because of the damage pred does systemically, or because the tinitus and deafness come back even with pred on board?

[Jack]

I mean that it is not a good idea to take high dose steroids indefinitely.

It seems to take more than just the usual maintenance dose to tackle the ear problems. I can cure mine with an increase to my Pred. but I've got enough side effect problems from the damn stuff already thank you. :(

[elephant]

I know what your saying, today I felt like I was under water talking. So I had to keep sniffing to get it cleared. So annoying!

[Sangye]

That's what I thought. Man, it must be so frustrating to have hearing and tinnitus problems. Those of you who live with it have my sympathy.

[pwc51]

I hate the thought of my deafness and tinnitus returning as my Pred is reduced - I had hoped it was eradicated once and for all! I am down from 60mg to 7.5mg so far with nothing returning so far.

[Sangye]

It can definitely disappear once the Wegs is under control--that happens to a lot of people. And for some people it doesn't. With Wegs you never know. Please don't worry about it at this point.

The bad thing about Wegs is it's unpredictable. The good thing about Wegs is it's unpredictable.

[elephant]

You made me chuckle Sangye. Yea, that's the problem " unpredictable!" My ears got bad at 5 mg of prednisone. My recent labs are Sed rate-3, and PR3- 26, so it is down from 34. So my local rheumy is not alarmed about my ears .....

[jola57]

elephant thats good, my pr3 is still 189. my ears started ringing when \i was on 60mg pred and have not stopped now that I am on 7 (hurray as of today) I think the deafness and ringing will just be a part of my life just like the foot neuropathy is. I can live with that quite comfortably

[Sangye]

Yay for being down to 7mg Jolanta!

I got some tinnitus during this last round of ctx. It's pretty minor and I only notice it when I meditate. My Wegs rheumy said ctx isn't ototoxic but the ENT said it was. I think if I'd stayed on it longer it might have done worse damage.

[jola57]

I also think that ctx had a hand in it.