Post nasal drip - Imuran?

[mrtmeo]

My mom has had this post nasal drip gradually getting worse with a cough that is now, all day long and started out only at night.
This has been happening shortly after starting the imuran 100mg per day.
Has anyone else had post nasal drip with cough while on imuran?

[Psyborg]

I've had both all along, but I'm pretty sure mine are disease related, and not drug related. Is it possible she's getting further symptoms?

[annekat]

Ditto what Bob said. I think most of us with any sinus involvement have post nasal drip and coughing no matter what meds we are on. It may be worse for some than for others. Mine is finally improving, after 3.5 years of treatment, with two flares during that time. I've never been on Imuran, just CTX and now, MTX, along with pred and Bactrim.

[loisann11]

I have this too. Was hoping it would go away. I have only taken Rituxin, with prednisone etc. My sinus has always been an issue just never with the cough so much. Not sure what it is from.

[annekat]

I have this too. Was hoping it would go away. I have only taken Rituxin, with prednisone etc. My sinus has always been an issue just never with the cough so much. Not sure what it is from. Not sure either, other than the inflammation of WG causing excess mucus in the sinuses which causes the post nasal drip, which causes the cough. Also, more crusting of the mucus with WG than with regular sinus infections, which could make it more irritating. And maybe some inflammation in the bronchial tubes and throat could be causing irritation, too. Changes in diet could also affect the amount of mucus produced. Just lately, I've stopped eating nearly as much wheat, and my cough has improved. I hope yours does, too.

[mrtmeo]

Hi Bob, Anne and Lois,
I think that you are right about the post nasal drip being due to WG's because it is so common and trachael inflammation maybe the root cause.
Anne, so glad to hear yours is improving, but sad that it took 3.5 years.

Subglottic Stenosis and Vasculitis Patients
https://www.youtube.com/watch?v=BifdvorrUJ8

Laryngologists will sometimes use a topical steroid in the throat to bring down the inflammation to reduce the tracheal stenosis.
My mom's case could be different because she did have an ulcer that was healing and she has MPA (Microscopic Polyangiitis). she used to have a dry cough only at night that went away with protonix (acid reflux med), but she is now on the protonix and has not let up at all and got worse over a weeks time.
I sure hope my mom is not developing tracheal stenosis, but anything is possible with this nasty disease.
However, the side effects for Imuran lists a persistant dry or moist cough and my mom's started right after starting the Imuran.

[annekat]

If it is one or the other, I hope it is the Imuran causing the cough and your mom is not developing tracheal stenosis. In my case, I have no reason to think it's either, because I don't take Imuran. I did watch half of the video, and saved the rest for later. That is interesting, seeing it up close and listening to true experts at that type of surgery. I have had my trachea looked at by my ENT a couple of times, and no narrowing was apparent, nor did he see the granulomas and such, but it's been awhile.... In any case, I hope your mom starts to get some relief from the cough somehow.

And I think the topical steroid inhaler is a pretty good idea. I have used them in the past for asthma, and have a prescription for one, but I'd sort of forgotten about it.

[brew22]

Do the Wegs symptoms ever go away completely?

[annekat]

Do the Wegs symptoms ever go away completely? I've heard and experienced that the sinus symptoms take longest to go away, if they ever do. There may be permanent damage to the sinus and nasal cavities. The symptoms should at least improve over time, if the disease activity is brought under control.

[mrtmeo]

If it is one or the other, I hope it is the Imuran causing the cough and your mom is not developing tracheal stenosis. In my case, I have no reason to think it's either, because I don't take Imuran. I did watch half of the video, and saved the rest for later. That is interesting, seeing it up close and listening to true experts at that type of surgery. I have had my trachea looked at by my ENT a couple of times, and no narrowing was apparent, nor did he see the granulomas and such, but it's been awhile.... In any case, I hope your mom starts to get some relief from the cough somehow.

And I think the topical steroid inhaler is a pretty good idea. I have used them in the past for asthma, and have a prescription for one, but I'd sort of forgotten about it.

Hi Anne,
Your guifensen suggesting was the thing that helped the most.
I really think she is going to die.
she is being neglected by her drs.

[drz]

I've heard and experienced that the sinus symptoms take longest to go away, if they ever do. There may be permanent damage to the sinus and nasal cavities. The symptoms should at least improve over time, if the disease activity is brought under control.

It is my understanding that the Wegs can often cause permanent damage to the sinuses and this often causes residual symptoms like post nasal drip as the sinuses are trying to calm down or flush out irritation which is essentially scar tissue or damaged tissue. Crusting and nasal bleeding can result from an increase in residual symptoms or a sign of more active Wegs. In cases where it is underlying Wegs activity, the treatment for Wegs will generally reduce such symptoms. There may even be some healing over time of some of the damage to sinuses and nasal passages which can reduce symptoms like post nasal drip and coughing. Using Muccinex or its generic and lots of sinus rinses are the best way to control these symptoms according to my ENT.

[annekat]

Hi Anne,
Your guifensen suggesting was the thing that helped the most.
I really think she is going to die.
she is being neglected by her drs. I'm glad the guaifenesin helped. Sometimes you have to be persistent with it. And like drz's doc, my ENT had me on Mucinex (guaifenesin in a tablet) and saline rinses from the very beginning of my sinus issues, which was actually 2.5 years before anyone realized I might have WG.

I hate to hear you say you don't think your mom is going to make it. I'm forgetting now if you are in Australia or the US, or where.. but in any case, I wish you could find a doc that would take her seriously and not neglect her. If you are near someone else on the forum, maybe they can help you find someone.

[mrtmeo]

I'm glad the guaifenesin helped. Sometimes you have to be persistent with it. And like drz's doc, my ENT had me on Mucinex (guaifenesin in a tablet) and saline rinses from the very beginning of my sinus issues, which was actually 2.5 years before anyone realized I might have WG.

I hate to hear you say you don't think your mom is going to make it. I'm forgetting now if you are in Australia or the US, or where.. but in any case, I wish you could find a doc that would take her seriously and not neglect her. If you are near someone else on the forum, maybe they can help you find someone.

Hi Anne,
We are in the USA in Wisconsin.
I found a recommended neph from a local vasculitis support person and will have to find out if they will monitor her.
The whole problem is that everything she was going thru could have been prevented with the things that have been well established in the protocol using Rituxan.
I should have went with my gut instinct and kept feeding her 75gms of protein all along instead of listening to the old outdated literature and others saying low protein preserves ckd.
If a person has a low hemoglobin, a high protein, high fat, low carb diet can protect it.
However, with the recent study on diabetic nepthropathy, they were able to reverse the proteinuria using a high fat low carb, minimum protein diet.

[Pete]

I have no long-term experience with Immuran. Tried it briefly and didn't respond well. However, I have found that taking 10 mg/day of loratedine and 10 mg/2x/day of phenylephrine have helped keep my sinuses dry enough so that I don't have post nasal drip. Both of these meds are OTC.

I notice that I'm a little stuffy during high ragweed season (now), but I'm not sneezing, blowing my nose, or having post nasal drip.

[loisann11]

Just a follow up.. checked in with a ENT doc about coughing etc. Says my sinus are all good, no problems, told me I had GERD with acid burn in my through. He claimed that GERD is what really causes the sinus problems and coughing etc. While I agree this may be true I now believe I have some kind of infection and will check with another doc. I am still coughing and bring up (sorry) yellow flem. I had this a couple months ago too and was given a Z-pak. It helped but it has come back. Getting very tired of coughing stuff up.

[Dirty Don]

loisann, that sounds exactly like my first flare when no one actually knew what was going on. Z paks didn't do much, and by the time they figured that out I was in ICU. Way it went, following protocols and having good docs has helped a lot. Oh, and don't worry about details on here...lol...ie: the thread(s) on boogers! Just wonderfully descriptive and gross!! Best to you.

[drz]

An ENT should be able to see GERD irritation in throat with an endoscope or some times just with mirror looking down the throat if your gag reflex isn't too bad. I have had damge andirritation from GERD several times. Some times I can feel it and other times I was unaware of the damage.

My WBC usually went up with any sinus or bronchial infections or other type.

[mrtmeo]

I have an appointment with a Larynologist because an ENT doesn't deal with the entire upper respiratory tract.
I want to make sure she doesn't have any tracheal stenosis going on.
She is no longer on the Imuran because it suppressed her bone marrow too much causing leukopenia.

So far, I think it is the prednisone kicking in her silent reflux and causing inflammation and the peptic ulcer to bleed, but haven't been able to get her hemoglobin up so that a scope would show it bleeding.

[ingemlb]

Hi mrteo. Just saw this thread. I have had sinus issues for many years the developed post nasal drip and shortly afterward a most nasty cough that went on for years. Only found out last year that one of the most common causes of chronic cough is post Nasal drip. That was before the WG diagnosis early this year. Had sinus surgery in october last year but that didn't fix things. Then I recently discovered that another very common cause of chronic coughs is GERD or any kind of Gastric Reflux. Something I have also had for ages. Have not heard before that this can cause sinus issues.

I have been on pred and mtx since early Feb and then a month ago my respiratory specialist also ordered a nasal steroid spray which seemed at first to reduce the post nasal drip. The cough is definitely less now than it was but it does keep flaring up.

So a steroid nasal spray may be something to consider if your mum is not already using it. But the cough is definitely caused by all this stuff from the sinus (and potentially from the reflux) running into the lungs. My lungs have been examined and found to have no damage at all so it's all coming from elsewhere.

[loisann11]

They did use a mirror to look at my throat. That is how he came up with GERD. Problem is I used to have that and I knew I had it. I don't feel I have it now. Hardly any gas in a very long time no matter what I eat. I was having a very, very bad cough and coughing up a lot of flem. I feel that is what gave me the sore throat. I didn't feel the Priloscec was helping and stopped. Cough has been getting better on it's own but went to general Pract. today to get another Z-Pac. This time was told if this does not work it is not bacterial but I am stuck with it. Hoping to feel better!

[ingemlb]

They did use a mirror to look at my throat. That is how he came up with GERD. Problem is I used to have that and I knew I had it. I don't feel I have it now. Hardly any gas in a very long time no matter what I eat. I was having a very, very bad cough and coughing up a lot of flem. I feel that is what gave me the sore throat. I didn't feel the Priloscec was helping and stopped. Cough has been getting better on it's own but went to general Pract. today to get another Z-Pac. This time was told if this does not work it is not bacterial but I am stuck with it. Hoping to feel better!

Loisann. I recently had a gastroscopy and was told I had severe reflux. I was totally stunned as I didn't feel it and also I have been on tablets for it for years. Apparently it is possible for the acid to go part of the way up the oesophagus and not into your mouth so in those cases you are unaware of it. But the respiratory specialist told me later that there is a small opening into the windpipe just where the oesophagus ends and that this is how the liquid that comes up with reflux ends up in the bronchials/lungs and causes coughs. Was all total news to me.

Do to check on your reflux you really need an examination by endoscope (gastroscopy).

[mrtmeo]

usually if food or acid is going that high up, it goes into the lungs and can cause aspiration.
What they say usually happens is not the acid, but the pepsin enzyme gets up that high and when ever the environment is acidic, it eats away at the tissues causing inflammation which causes post nasal drip.
This enzyme can be permanently deactivated with a ph of 8.8 or higher.
Otherwise, inflammation in the esophagus can also, be entirely due to vasculitis and causes the inflammation that causes drainage.

[mrtmeo]

Looks like the ppi has kicked in and the cause of her post nasal drip is from the ulcer in her stomach.
I stopped the guifensen dm over a week ago and her coughing is gone.
We are still going to see a larynologist to find out if her barrett's esophagus and throat irritation is due to acid reflux or vasculitis.

[mrtmeo]

update:
I guess I spoke too soon because she started coughing again periodically, but not as much as before.
I had only cut her prednisone from 10mg to 8mg, so maybe it is the vasculitis.