View Full Version : Cough

01-16-2010, 11:11 AM
I have developed a terrible dry cough for about a week now, on Monday my Rheumy put me on antibiotics sayings its the summer flu going around (been on Pred & Methotrexate for about 5 weeks now.) But I am concerned about this cough, I don't think its part of the flu as I have had no other symptoms of a flu (eg: cold,fever etc).

I have nearly finished the course of antibiotics but my cough has got worse to the point where I am coughing until I vomit, kept nothing down yesterday (so I don't even know if my methotrexate go through my stomach before i vomited after my meal). And I find its worse if I talk, so keeping talking to a minimal (much to the delight of my work colleagues).

Unfortunately, its the weekend so can't speak to Rheumy and honestly just don't feel like he is really worried about it - but now with the vomiting I am concerned and was wondering if it could be a side affect of the drugs or even part of WG, as I have read of a few of you mention about your cough...

01-16-2010, 03:19 PM
Kat, please get a chest x-ray asap (possibly a chest CT also). Mtx can cause lung infiltrates which makes you cough. It's a reaction to the mtx and means you cannot stay on it-- very dangerous. There's no way to tell without x-ray and/or CT.

If you can't get to your regular docs, go to the ER and tell them you're on mtx and are concerned about "lung infiltrates." It's a famous reaction.

01-16-2010, 08:29 PM
Agree with Sangye. This sounds like no ordinary cough and should not be dismissed. Get it checked out now, but bear in mind that the ER docs will not have a clue so you need to do your homework first.

01-17-2010, 02:19 AM
Hi Catwoman. I also developed a horrible cough the last three weeks and have no voice again. It often seems to be part of my wegner's. But this time the doctor suspected it wasn't. He went ahead and upped my predinizone but told me if it changed during the holiday to go to ER and have them check my lungs. I did end up going but there was nothing abnormal (not sure ER doctor knew what to look for) but they did an X-ray. anyway I ended up back in Doctors office and he sent me straight to ENT to check. It turned out I had a sever sinus infection and a very bad case of thrush covering my vocal chords. At least there is no sign of a flare this time and my sed rate is still low. Be sure to check it out. It can do a lot of internal damage no matter what the problem is.

01-17-2010, 09:49 AM
My Rheumy on Monday was like here are antibiotics and if it doesn't clear up you may need a chest x-ray....and lets not mention as i was leaving (early i had mentioned work had sent me home) he was like now you need to get back to work as soon as possible..omg maybe he thinks works is the cure..lol!

I have had a really quiet weekend (as i normally do these days) and the cough remains (although without talking I find I am not coughing until I vomit) but it is a very deep cough remains none-the-less. I did have mouth ulcers from the methotrexate (rheumy didn't mention about folic acid, which i found out about talking to other methotrexate users) and seeing the cough started after mouth ulcers/sore mouth mum is worried it might be ulcers down the throat..what to do!

I am going to call my GP in the morning, I feel like I'm just an inconvenience to to my Rheumy.

01-17-2010, 09:54 AM
I feel like I'm just an inconvenience to to my Rheumy.
Then you need to find a new one!

01-17-2010, 10:19 AM
Jack, I know I do! He is the only one in a 4 hour radius of where I live and keeps telling me he deals with other WG patients...I wish I could say can you supply me with there the name and addresses (like a trade reference).

Oh his other comment was for me to go to see ENT and said he will follow his lead regarding medication and the activity of wegener's - is that normal? I know that they all work together but shouldn't he know from discussions with me and blood tests how WG activity is going?

01-17-2010, 10:30 AM
In my experience, ENT specialists know nothing about Wegener's.

01-17-2010, 10:40 AM
In my experience, ENT specialists know nothing about Wegener's.

You are right, my first visit to my ENT he actually had to look it up in a medical book, although very concerned about me, other then seeing the crusting etc in the nose doesn't have any experience with WG and has admitted that he only goes on by what he see's in my nasal passages and from the symptoms I am tell him I am experiencing. He does not feel comfortable in recommending treatment for a life threatening illness, its actually refreshing to hear a specialist honestly admitting they no nothing about WG and also doesn't charge me for consultations (as I have mentioned before he said 'not your fault you've got this god awful disease)!

01-17-2010, 11:36 AM
Even my ENT admitted he knows very little about WG, just the ear, nose, and throat involvement part. He said he always waits to hear from me and my Rheumy as to what to do. He said he is here for me to tell him what to do and offer suggestions and any help possible whenever I need it. He said the Rheumatologist is the one that knows the most about Vasculitides such as WG because of the inflatmation part and alot of Rheumys also study internal medicine and immunology which makes them even more knowledgable about the goings on of WG.

01-17-2010, 01:53 PM
katwoman I hope you can get help soon.

01-17-2010, 02:13 PM
Kat, you definitely need a rheumy overseeing your care. Even an excellent ENT who sees lots of Wegs only treats ear, nose and throat. You need someone looking out for all of you and referring you out to various specialists as needed.

01-18-2010, 12:16 PM
So I phoned the Rheumies office this morning to ask to speak to him - receptionist tells me oh no you need to see GP, I am so cranky so I phone my GP office who tells me there is nothing available until the 29th Jan..this is utterly ridiculous and so I phone Rheumy office back and tell the receptionist that I want to speak to specialist as this is not satisfactory, she comes back and tells me Rheumy wants me to have chest x-ray.....

I just went and collected form for chest x-ray and ask the receptionist will Rheumy call me with results or should I call him, oh no she says you'll get a report wit the x-ray (omg I may as well treat myself) and then says oh or he'll call you.

This is the most inadequate care I have ever encountered in my entire life! I have just spoke with my boss who socializes with GP's etc and he is going to see if he can get some other recommendations

01-18-2010, 12:43 PM
I sure hope you can get it sorted out quickly. Getting a reliable, skilled team of docs is essential for your physical AND mental well-being!

01-18-2010, 12:49 PM
Katwoman, first I commend you on being persistant and on top of this. Sorry you have to go through the run around with the doctors! You certainly do not need this!

01-18-2010, 05:33 PM
I concur with Sangye and Elephant Katwoman. Be persistant but nice.

01-18-2010, 06:12 PM
Be persistant but nice.

I always play nice, sometimes being a cat the claws can just come out on there own..lol!

Anyway, had chest x-ray - results should be in tomorrow, I'm sure it will all be fine but better safe then sorry as they say. Looking forward to what next steps will be with rheumy!

01-18-2010, 07:45 PM
yep need a new doc and one that deals with wg patients .. they tried that with my mom and her eyes until she went blind for a time thats when they gave her another dose of pregnazone . dont let it go to far!!!!

01-21-2010, 09:08 AM
results of xray were all good, no nodules and all was clear!

Cough still really horrible, but I feel ok!

01-21-2010, 09:34 AM
WooHoo! Great news!

01-21-2010, 09:40 AM
How long have you been coughing? Remember Ct scans are better at dectecting nodules, so if you get worse ask for a CT scan for the lungs. My husband who is healthy had a cough for a month. So it could be sinus drip or viral or WG. Glad the x-ray was clear.

01-21-2010, 09:42 AM
Yes wonderful news !!!!

01-21-2010, 10:24 AM
Newly diagnosed here and my ENT, who specializes in and did research at the NIH in WG even said that he would not lead the clincial care of a WG patient. "I'm just the plumber" he said. The rheumo made clear there was only one team leader, and that was him. That having been said, I'm sure that it's helpful that if you need nose or throat surgery (both of which I do), that you see an ENT who has seen it before. My rheumo said that even in NYC it isn't unusual for them to never have seen a single case (the guy who ordered my original CTs never had, and he's with a major teaching hospital), as is my pulmo, also with a major teaching hospital. She had never seen a case.

01-21-2010, 01:48 PM
How long have you been coughing? Remember Ct scans are better at dectecting nodules, so if you get worse ask for a CT scan for the lungs. My husband who is healthy had a cough for a month. So it could be sinus drip or viral or WG. Glad the x-ray was clear.

Hey Elephant, had cough for over two weeks now and I have been through two courses of antibiotics with no results - not sleeping at night is the worst part, I have actually taken half day off work because I am just so tired and plan to try and get some sleep this afternoon..fingers crossed! If no improvement by next week I am going back to Rheumy to see if there is any other suggestions (sinus area is the usual crusting but don't think drip so could just be a bug hanging on)

01-21-2010, 01:53 PM
Do you use the sinus rinse? I use it twice a day ( morning and night). It's a pain, but it cleans those sinuses out. That way you can keep an eye out when you use the rinse for example....bleeding..green...yellow...clear...and other junk...that comes out of the nose.....fun subject ...

01-21-2010, 01:59 PM
I couldn't live without my sinus rinse and also use KY jelly to keep the area moist. Sadly, my nose is always bloody and crusting (even while I am on 10mg on pred), the cough is dry but feels very low not in the throat area seems to come from chest (although as I said xray was clear)

01-21-2010, 02:01 PM
Excuse an ignorant one: What does crusting look like and feel like?

01-21-2010, 02:06 PM
Sounds like you are on top of that. Katwoman, hopefully it is a virus. Just listen to your intuition too.

01-21-2010, 02:37 PM
I wonder if anybody would be too grossed out to take pictures of what comes out of their nose and put it on here? If not, I would do it.

01-21-2010, 02:44 PM
Mine is pretty clear. BUt if I get an infection, I will let you know....I would not be grossed out either..

01-21-2010, 05:34 PM
I heard of someone else that took pictures of the gunk - I will ask that person if they want to post them on here. I think I will take some pictures as well. Mine are hard, dark, red bloody chunks that I cough up from my larynx.

01-21-2010, 08:16 PM
Excuse an ignorant one: What does crusting look like and feel like?

Ha will it looks like you may soon have some snap shots to view Moyan..lol!

My crusts occur right up the back of the nose basically where your bone is, its very very hard which makes its painful to touch the nose cause its a solid mass (thats why the need for nasal rinse and lubrication to try and keep this from happening) this forms a flat base which has attached behind it a black bloody tubular formation (presume formed on the sinsus tissue) and this can be up to 4-5cm in length when i pull it out, the relief in the sinus area is instant (but sadly only lasts a few mins)...

Like Brooke and a few others I'd be happy to share pics as I find it fascinating and happily show my family the amazing product of my nasal passages...much to there dismay and disgust .. lol! I just cannot believe that my nose could form such things...its totally amazes me

01-21-2010, 09:08 PM
Good description katwoman, but I'm not sure I'm looking forward to the pictures, they'll have to come with a warning if they are like the stuff that used to come from my nose.
As you say, it is a sort of amalgum of drying blood and mucus high up in the nasal passage. I used to sometimes think part of my brain was coming with it when I pulled the plugs out. ;) It is much kinder on the nose to flush it out as previously described.

01-22-2010, 04:09 AM
It's totally unlike me, but I'm getting a little queasy at the thought of seeing these pictures. :D

01-22-2010, 04:31 AM
We should have a "Gross Post" trophy!

01-22-2010, 06:33 AM
For us on prednisone this might be a good idea. That way we won't eat so much. Just look at the gross pictures of nose chunks...then try to eat! HHeee Hee

01-22-2010, 08:24 AM
When I get my pics ready I will put them in my profile in my albums.

01-22-2010, 04:52 PM
LOL-- you guys are so funny. Gross Posts and appetite suppressants. All very good ideas. Thank goodness for the album idea, Phil!

01-22-2010, 05:33 PM
Ya! I thought I better give people the choice of whether or not to look at them.