Throat Ulcers?

[cutehair2013]

Hello everyone

Since June I have been getting throat ulcers over and over not just 1 or 2 of them but 5 and 6 at a time making it nearly impossible to eat, drink and talk. My spouse was to the point we had paper and pens to communicate as I could bare to speak anymore. With this damn Wegeners I have been in discomfort, and in pain but nothing like that last several months with these damn Ulcers. Some days it was all I could not to just sit and cry but that flipping hurt more! I finally saw an ENT who said it was post nasal drip and nothing can be done about it, do your trusted nasal rinse, and no salty foods.

I was wondering if anyone else has gotten throat ulcers and or have any tips on how to keep them at bay? The rinses are not working and my diet of course could use work and who doesn't like a salt shaker! Honestly I have changed my eating habits drastically as well and with months of struggling to eat you would think a few pounds would have dropped off :-)

thanks for listening to my vent! I can still type up a storm...speaking still not so much :-(

[Jaha]

I have not had any experience with the throat ulcers, they sound awful. I have gotten bad thrush from Mtx , Imuran, and Ctx. My primary care doc gave me Mycostatin for it, I had to use it off and on when ever I would get the thrush from medications. I don't know if that would help your situation or not, but I would ck with your pcp about it. Wishing you all the best.

[gilders]

I get many blood blisters in my mouth, but they don't sound anything as bad as ulcers. When I first presented with Wegener's my mouth was so bad I had a hole straight through my tongue. They took photos to put in a medical journal, so I really feel your pain. Once I was diagnosed the ulcers went away with the treatment for wegeners.
If the salt is part of the problem, remember 2 things - salt is "hidden" in many foods, so it's not just the salt shaker to be wary of.
More importantly, my nasal rinse is basically water and pure SALT. You maybe treating the problem with one of the causes.

[Titus3:2]

Cutehair,you certainly have good reason to be upset.I developed ulcers on my pharynx in August of last year which is still going on ,and has resulted in tissue loss.ENT,and Rheumatology don't believe it is GPA related,but have given no other reason for what is causing this problem.All my lab work is stable.I did start adding baby shampoo to my saline mixture,and it is more soothing if nothing else.It takes a bit of getting use to,and I use less than what is recommended as I do with the salt in the saline mix.I have been living on almond milk mixed with carnation instant breakfast,and protein powder for breakfast ,and lunch.A meal of solid food for supper.Your ENT is right.Stay away from salt.Makes no sense when your saline mixture is salt.It is tough doing without the foods you like.I looked up post nasal drip throat ulcers,and it can be hard to treat.If you are concerned this is GPA related ,you could see another ENT.It is very frustrating.Take care,Keith.

[annekat]

I was recently found to have some small ulcers in my esophagus caused by acid reflux. A doctor had told me wrongly in the past that the burning, awful taste in my throat was post nasal drip from the sinus issues I was having at the time. It was acid reflux the whole time, and has escalated to an inflamed esophagus, which is being treated effectively by omezaprole twice a day. I believe you have throat ulcers, as your doc says, and which Keith is also experiencing, but I have to wonder if you are having any acid reflux from the digestive tract, which could further aggravate the ulcers. It really does sound awful, and I wish there was a way for both you and Keith to get this cleared up permanently.

[Alias]

I have had several recurrences of oral thrush due to being immune suppressed. It's been successfully knocked out with Nystatin but I'm guessing will continue to recur occasionally. It's not painful, just mildly irritating and kind of gross. Just wondering if your docs have ruled out a fungal issue like thrush, as it is easily treated but can become quite serious if not treated.

[Gab122]

Hello everyone

Since June I have been getting throat ulcers over and over not just 1 or 2 of them but 5 and 6 at a time making it nearly impossible to eat, drink and talk. My spouse was to the point we had paper and pens to communicate as I could bare to speak anymore. With this damn Wegeners I have been in discomfort, and in pain but nothing like that last several months with these damn Ulcers. Some days it was all I could not to just sit and cry but that flipping hurt more! I finally saw an ENT who said it was post nasal drip and nothing can be done about it, do your trusted nasal rinse, and no salty foods.

I was wondering if anyone else has gotten throat ulcers and or have any tips on how to keep them at bay? The rinses are not working and my diet of course could use work and who doesn't like a salt shaker! Honestly I have changed my eating habits drastically as well and with months of struggling to eat you would think a few pounds would have dropped off :-)

thanks for listening to my vent! I can still type up a storm...speaking still not so much :-(

Cutehair, I wish I had something helpful to add but know that you are welcome to come vent anytime! It's a rough road we travel. Sometimes worse than others I see. I'm new to this journey but feel you are all family in a new way. Hoping you find a solution - sending hugs!
~ Gab

[Titus3:2]

I was diagnosed with acid reflux many years ago by ENT,and currently prescribed Nexium by them.Thrush,fungal issues have been ruled out.So has infection.I have been seeing ENT every three months to monitor the situation.I will see them on Oct 3,for follow-up.My subglottic stenosis has been at 90% occlusion for months,and I have put dilation off because that surgery can be rough on the throat,but will be scheduling it this visit.Two weeks ago I spoke to my PCP about this problem,and requested it be off the record.She was very understanding,and offered her opinion.It does not hurt to talk,but sneezing is something I try to avoid among other things.I wrote a thread about this problem sometime back.Cutehair,I would try talking to your PCP about this problem.It may be helpful.Let us know how you are doing.Keith.

[drz]

A few months after my diagnosis I was rushed back to my treating hospital for a suspect flare with concern about possible stenosis in the throat area but it turned out to be inflammation of the area due to GERD. They had cut back my generic Protonix and that caused the GERD to damage my throat. I was not aware of the usual symptoms of GERD that I had experienced before but my throat healed up after going back to two Protonix pills per day instead of one. Now I am trying to switch to Zantac to control the GERD.

[cutehair2013]

Thank you everyone for your input and suggestions! I have spoken with my family doctor and rhemy specialist and they think it is a reaction to the Imuran. Recently my specialist jacked up the dose of Imuram (400mg) as my inflammation is through the roof, all it did was make me sick and give me brain fog not to mention the worse rash I have ever had the pleasure of dealing with. All that before you deal with being nauseous all the time I couldn't function I left my purse at a store and couldn't remember where I was. Lost my car in a parking lot and took a cab home, which my partner found super funny...well after we found the car lol. On the good side I forgot my pin number on my bank card so I couldn't spend money. Now that the dose is reduced to 250mg I am still experiencing a lot of issues and they want to try to switch me off and on to Methotrexate in which I didn't do well on prior either. They both do not want to give me rituxuimab as I am still working full time and they do not feel I will be able to handle the treatment and remain at work. Me being my stubborn self, I want to remain at work as long as possible and I am in the middle of a huge project that I want to finish prior to coming off. 10 more months...and I will be ok with coming off work for while.

I have tried the baby shampoo years ago when my nose was bad, I will give it another whirl and see if it helps. I have struggled with Acid reflux in the past as well but doctors do not think that is the issue at this point as nothing seems to help it. I was on some medication for heartburn for a while but I ended up having a reaction to it as well. I fear I am not the medication type person. I do also struggle with the subglottic stenosis always clearing my throat. Since this whole throat thing started my coughing has increased as well.

I will keep you posted on what the doctors are going to try.
thanks everyone!

[MikeG-2012]

They both do not want to give me rituxuimab as I am still working full time and they do not feel I will be able to handle the treatment and remain at work.

I've been working full-time (40 hours a week) all along, even through 12 RTX infusions. I have the infusion on Thursday, take off Friday, crash through the weekend, and come back to work on Monday as good as new. I have, on occasion, went back to work on Friday after a Thursday infusion when I have had a huge event here at work that I needed to be on-hand to help with equipment support. That wasn't all that bad really. Saturday and Sunday seem to be my crash days after a Thursday infusion.

So, you MIGHT be able to keep working when on RTX. Sure beats the other side effects that you've been having.

Hope things get better for you!!

[Gab122]

I agree with Mike G. I think a day or two off is all you might need after an infusion and infusions aren't that frequently through out a whole year. I had my first 2 in Aug and my next is in Dec. I think I'll be getting 4-6 per year at most so it may not be affecting your work too much if you got Rituxan. Something to consider.

[TOBEY32]

Not sure my PM got thru: Lysine helps w/ mouth ulcers - might it help here? Terribly cheap. Can't hurt.

David