coughing

[Alysia]

Hi,
I got RTX 2 months ago and there is an improvement in every thing (slowly) but not in coughing.
In fact, my cough became worse.
I went to see my lungs doc. he sent me to X-ray. nothing new with my lungs. the same old "stripes". (my lungs looks like a zebra). his nurse checked my respiratory functionning which were O.K. he said that maybe I cought some germ or virus and gave me Azenil. it was a disaster: I had so much diarhea and continued to cough.
anyone has any suggestions ? meds ? Im afraid of more antibiotics. Roxo is the new option...
can it be from the MTX ? from the RTX ? still from WG ?
thanks.

[annekat]

Some of us have the kind of coughing that is just the result of stuff dripping down out of our sinuses and collecting in our bronchial tubes, where it eventually causes coughing. I can go for hours with no coughing and then I will start and it will sound pretty bad to others until I cough something up. And what I cough up is usually a very small amount of stuff. From what I've read on here, my sinuses are permanently damaged and will always produce excess mucus. So the cough will probably always be with me. It has gotten better over time, definitely, but I don't expect the mucus production or the cough to ever completely go away, even if I am in remission. I hope your cough has a simple explanation like this and is not something more serious. But I also hope, whatever the cause, that it gets better and goes away!

That doesn't answer your question of why it would have gotten worse. I know so little about RTX, I cannot speculate there. I don't think MTX makes me cough. Possibly more old, thick mucus has built up in your sinuses and is causing more thin mucus production to try to flush it out. I am amazed at the chunks of stuff that sometimes come out of there with sinus rinses. And I always feel worse and cough more before "giving birth" to one. Doing more of the sinus rinses could help.

[rebekah]

I’m still coughing after the Rixutan infusions too. My scans came back and my pulmy said there’s nothing other than the usual mess my lungs look like. He says it can take 2-3 months to see the full effect of Rituxan working, but I had them in March and I can’t shake the cough. I thought I would have seen some improvement re: coughing, but mine hasn’t gotten worse like you. I did just have another infusion so maybe that’s part of the reason for me? My primary put me on antibiotics but that hasn’t worked and wants to try another one. As if I didn't have headaches already, looking through the packet I got when I started RTX and online, I see that coughing can be a side effect from RTX. Like you, I’m tired of antibiotics not working and don’t really want to try another. I might just wait it out and hope things improve soon. But I seem to be doing a lot of that and it hasn’t been a good thing for me to do. I just never know if it’s from WG, the meds, or something else. I guess the saying that doctors make the worst patients is true... Well, I typed this and realize it’s not very helpful, sorry. I blame it on the boredom of not taking classes this summer. If you find something that helps please share. Hope you feel better soon. :)

[annekat]

Oh, Rebekah, I think all of our descriptions of what we are going through help others to some extent, whether we typed it out of boredom, idleness, or whatever...... good to hear from you in any case! And you will have more time now to study Wegs on your own in preparation for when you become a real Wegs doc!

[pberggren1]

Is your cough a dry cough or is it productive? How long have you had it?

[Alysia]

Hi, thanks.
the cough is dry. it is lasting for months. I was hoping RTX will help. in the last month the cough became worse. and walking is not helping with it as before :(

I have "big" question: what are the symptoms that we have to live with and accept, and what are the symptoms that we dont have to live with, that there is a way to get rid of them and/or that they are an indication for flaring/ some deterioration... and how we can diffrentiate between them ?

anyway, thanks for writing here. it helps. i love you.

[Psyborg]

I have "big" question: what are the symptoms that we have to live with and accept, and what are the symptoms that we dont have to live with, that there is a way to get rid of them and/or that they are an indication for flaring/ some deterioration... and how we can diffrentiate between them ?


I wish I had an answer to that....it seems very random to me. My cough does improve at some point, but my issues are with my airways and not the lung itself so I may not be a valid comparison.

[annekat]

Everyone is different, but it seems that the symptoms I will have to accept, whether I'm close to remission or not, are the coughing and obstructed airways from sinus drip, the production of excess mucus, and the fatigue and need to pace myself, maybe due to permanent reduction of lung function. In other words, these are the symptoms caused by permanent damage that will probably not be repaired by the body. Also, hearing loss and loss of sense of smell, though I still have hope for that last one.

As to how we differentiate between the permanent and the fixable stuff, I think it is by experience, and by reading of others' experience on here.

[rebekah]

Mine's more of a productive cough... It is a little annoying, and has me paranoid of coughing up blood (thankfully I have not since my hospital stay in February though). But when I go out in public it's kinda nice because people stay away. Fewer germs for me, I guess. Just trying to find the bright side to all of this. Here's to hoping our coughs go away soon.

[Evie22]

Hi Alysia,
Seeing as there is nothing new in your X-ray, how about looking at your surroundings, I find strong smelling washing powder can start me coughing, air fresheners, too much dairy, Pringle crisps are ldangerous, some of the strawberry crops are sprayed with anti-freeze, lettuce is sprayed 12 times before reaching the supermarket. I have found my system is super sensitive to all these things since treatment, so maybe take a look at what you are eating. I find Propolis throat spray great for calming things down and gallons of filtered water.

[annekat]

I, too, have had success with propolis throat spray. There are small herbal products companies that make it, and some larger ones, too... I have bought it in the "natural foods" section of a regular grocery store, and I'm sure you can get it online. And then there is Entertainer's Secret Throat Spray, which is mostly aloe vera, which also works very well and has been used successfully by me and others on here. It is only available online, last I knew, but is easily searchable, has its own Facebook page, etc. I haven't really been using either of those lately, as my throat hasn't been as dry as it was... an improvement! I seem to be using Ricola drops occasionally now instead.

[zizzcat]

Hi Alysia,, I hope your coughing gets better soon.

I've just started looking into the possibility that my immune disease may be Wegner's. I've had some problems with coughing for months now. I've had it bad enough to make me feel like my throat is closing up and I can't breathe. When my husband is with me, he coaches me through it. It seems to be worse when I am talking or in a place full of people. I'd like to try Propolis. I use Halls cough drops, sometimes 3-5 at a time, along with liquids. Reclining also worsens it, specially when I lay down on my mountain of pillows to sleep. I have some problems with my throat that the docs are still looking into. I don't know if the immune suppressants make it better or not.

I hope you improve and if you find something that works, let us know.
take it easy.

Hope

[mishb]

Oh Alysia, you poor thing.

Like Hope, my cough is really only after talking a lot or in a crowded place where you have to try and yell to be heard.

I'm sorry the RTX hasn't fixed everything, but those throat sprays sound like they could work.

Has your doc suggested anything for it?

[Alysia]

Has your doc suggested anything for it?

Hi, thanks. my lungs doc suggested more antibiotics. Im not sure it can help or make more damage. Im still hoping that the RTX will continue "fixing" things because my WG doc said that the most improvement is about to come between 2 to 4 months after the IV.

[chrisTIn@]

Hi, thanks. my lungs doc suggested more antibiotics. Im not sure it can help or make more damage. Im still hoping that the RTX will continue "fixing" things because my WG doc said that the most improvement is about to come between 2 to 4 months after the IV.

Hi Alysia. Has your lung doc motivated his advice? Has he pointed out what he expects from the antibiotics?
Since your cough is not 'productive', and the x-ray showed nothing 'new' in your lungs, I wonder if another antibiotic is the solution.
It seems to me, the tissue of your throat and/or windpipe is irritated for some reason.
Maybe a 'scope'-investigation of the throat will show if the tissue is irritated or damaged?

Good luck with finding the right solution for this coughing-thing. I can understand that it's very annoying...

[Dirty Don]

Because of the 'nature' of WG, the cough is one thing the docs can only guess at right now. There is the drip for those of us with messed up sinuses...nothing works there. There is the dry and irritated throat...sprays and drops help...antibiotics do NOT. I use a spray, eat lots of sugarless Ricola, drink lots of water, eat some soft foods that help coat the irritated areas...nothing works. If the docs say they can fix it, they're wrong...I've been looked at by the best of ENTs, Pulmy, Rheumy...nothing. For many of us, it is simply a reminder that we are indeed still sick and it ain't going away...sorry, not being curmudgeonly, just honest. To this extent, my cough has lessened over the last few months (nearly 2 years from dx), but it hasn't gone away, and pops up at curious times...