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Thread: Constant gross mouth taste - med side effect?

  1. #1
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    Question Constant gross mouth taste - med side effect?

    Sometimes, I feel like my spit is toxic! My mouth tastes gross all the time now - I couldn't really find anything about this in the literature from the doc on med side effects. I feel the constant need to brush my teeth or chew really strong gum. Hubby thinks it is from the cytoxin - anyone else experience this?

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    Hi ArlaMo,
    Welcome to the group. I live in Olympia, but continue to drive to Spokane to see Dr. Kenney at Arthritis NW.

    I have the same problem with my mouth and have had for several years. I have a very dry mouth and have had a lot of mouth ulcers in the past. One thing that has helped a tiny bit is to use Biotene toothpaste and mouthwash. I seem to be very sensitive to the foaming agent - sodium laurel sulfate - in most toothpastes. It strips the lining from my mouth and sets me up for more sores.

    But I am sure the Cytoxin contributes, as well. It would most likely be destroying the rapidly growing cells which make up the mucous membrane inside the mouth.

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    Thanks, Lola, for the welcome! I will definitely try the Biotene - good to know. I had stopped using my Listerine because it hurt my mouth so much - also had large sores/ulcers for a few weeks. And I had a bunch of info from the oncology group here that said not to use a mouthwash with alcohol while taking cytoxin.

    I am seeing Dr. Mueller at A NW - have you also seen a Wegs specialist? After reading lots here yesterday, I am wondering if that is something I need to do soon.

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    I have not seen a WG specialist, though my nagging angels are always sitting on my right shoulder whispering into my ear that I need to do so. $$ and PPO insurance are my downfall right now - especially as I am getting needing to stop work secondary to my health.

    If you can, I agree with the naggers that this needs to be done. You have some pretty alarming symptoms. I think that we are both probably receiving optimum treatment, but there are so many little things that need fine tuning and attention. I do believe that the docs at A NW meet to discuss treatment strategies, but the numbers of patients are limited. My dr treats 16 pts. I'd be interested to know about Dr. Mueller.

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    I think I am his only Wegs patient at the moment, although he did say he had another potential. At our first visit, he told us he sees maybe one a year. I liked him the first visit - he seemed a bit...unsure...on the second visit. My husband directed the whole kidney/need-to-see-a-nephrologist issue on the last visit. He does follow Cleveland Clinic's Dr. Langford pretty closely and keeps up with what they are doing.

    Need to check into what our insurance would pay outside network, but my biggest problem is trying to arrange the lives of my six kids when I'm gone. Even the trip up and back to Spokane creates headaches with a little one at home and all the bigger kids involved in 5 bazillion activities.

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    Hi ArlaMo, I am one of the naggers ....I actually see Dr Langford at the Cleveland Clinic and I drive there 20 hours round trip, but I stop of course. Yes, I have two young children and actually my mom is flying in to take care of them. It is worth the trip to see a Wegeners specialist...because they see hundreds and hundreds and hundreds...I guess you got the point.
    There are four institutions, just check the vasculitis foundation for a Rhuematologist that specializes in Wegeners disease.
    Last edited by elephant; 05-13-2010 at 08:21 AM.

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    I have asked my Rheumy to consult with Dr. Gary Hoffman who works with Carol Langford.

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    That is great Phil, hope you hear from them soon.

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    Would I be able to call Gary or Carol directly?

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    You can call them and leave a message. Ask if you can leave a message with Carol's assistant ( can't remember her name). Office-216-445-6056, appointments-216-444-5632,fax-216-445-7569.

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