View Full Version : Constant gross mouth taste - med side effect?

05-13-2010, 03:38 AM
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?

05-13-2010, 03:46 AM
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.

05-13-2010, 04:01 AM
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.

05-13-2010, 04:38 AM
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.

05-13-2010, 04:47 AM
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.

05-13-2010, 05:28 AM
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. :)

05-13-2010, 08:18 AM
I have asked my Rheumy to consult with Dr. Gary Hoffman who works with Carol Langford.

05-13-2010, 08:22 AM
That is great Phil, hope you hear from them soon. :)

05-13-2010, 08:26 AM
Would I be able to call Gary or Carol directly?

05-13-2010, 08:31 AM
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.

05-13-2010, 10:00 AM
Phil, unless you're their patient, I can't imagine that you'd get to talk with them directly. The consultants work with your doc, not with you directly. This is a major reason why it's best to see them as a patient when possible. (I know that's probably not an option for Canadians, but people do go there from around the world. I have no idea how they do it)

ArlaMo and Lola-- there is no such thing as following a typical Wegs protocol because there isn't one. Just look at all of us in this group-- we're all on different doses, with wildly different histories and symptoms. The best time to get a Wegs doc is when things are going okay. I just can't emphasize this enough. One little complication and most regular docs will be totally lost. Even good ones, and even ones who look up the latest research. I have suffered major damage at the hands of docs who were out of their league.

I bet the gross taste is the chemo. It's chemo, after all. When I was on it the first time along with massive doses of pred, my sweat was actually rust-colored.

05-13-2010, 10:35 AM
Hey Phil, Sangye is right...once you see them once ( the specialist then they will talk with you and answer any questions), I know if your doctor asks the questions that you want to know they ( the WG specialist ) will try to answer the best they can.
But Phil, you can always try to call yourself, what can it hurt?

05-14-2010, 03:44 AM
I think the chemo's the cause of the taste, too. I know it affected how food tasted! There was a long time I couldn't eat foods with vinegar used in their preparation (ketchup, mustard, salad dressings), acidic foods like tomatoes, and others. When I got out of the treatment phase (6 weeks of hospitalization in three hospitals in two states), I decided to treat myself to a favorite variety of pizza. It tasted so bad, I barely finished a piece. Potato salad, a major weakness of mine (one I prepare several different ways, but none edible during this period), I thought was lost to me forever. And so on! Don't despair: once you move on from initial treatments, these things clear up mostly.

05-15-2010, 04:15 AM
Yes the taste and the smell is awful. I tried to drink and drink and drink water, mouthwash, frequent brushing but nothing works. I find that the nose crusting smells bad too so its the sinus infection as well. We just can't win so chew gum, eat parsley, stay away from sugary, starchy foods and red meat. It will not work but maybe lesen it a bit. Oh and eat folic acid for the mouth ulcers, it helped me with mouth sensitivity as well.

Col 23
05-16-2010, 01:57 AM
So glad we are talking about the awful taste in the mouth. I feel like I have soap suds in my mouth and I am always on the hunt for the elusive real taste.
Everything tastes a bit like cardboard. Ive heard lemon tastes okay so Im going make or buy a lemon cheese cake tomorrow. I cant wait until I can really taste again.
By the way yogurt was great for thrush in the mouth.
Col 23

05-16-2010, 03:56 AM
How about trying triple chocolate chip muffins. :)

Col 23
05-16-2010, 04:12 AM
Triple- mmmmmmm why not and the cheesecake and 1 strawberry daquiri.

05-17-2010, 06:12 PM
my thrush comes and goes but the awful taste stays

05-19-2010, 07:33 AM
Hi - I'm back on the WG Forum after a few year's absense. I was diagnosed in 1979 after years of headaches, severe nosebleeds, fatigue and watching the cartilage recede in the bridge of my nose. Cytoxan and Prednisone had just become the first and only options. I'm currently taking Retuxan (tomorrow is my second dose).

I feel very lucky to see Dr. Chad Byrd (rheumatology) at the Wenatchee Valley Clinic in Wenatchee, WA. He moved here a year ago from the east coast where he treated multiple WG patients. I actually feel more comfortable seeing him than driving to the University of Washington. ArlaMo and Lola, since you live in the state of Washington, I really recommend you see Dr. Byrd as a second opinion.

By the way, Curlygirl is my wife's pen name! My name is Dwight.

05-19-2010, 07:37 AM
How are you feeling? Are you currently taking any medicine right now Dwight?

05-19-2010, 08:46 AM
Hi Dwight, nice to meet you. Wow, another 30 year Weggie. Can you fill us in on the years between dx and the present? What has your health been like?

05-19-2010, 09:24 AM
Dwight, aka Curly Girl

Very nice to meet you. I am interested in your rheumatologist. Do you know how many Wegs patients he treated? Thanks

05-19-2010, 09:27 AM
I'm a little tired right now - tomorrow I have my second infusion of Retuxan. I'm taking Furosemide, Plavix, Actonel, aspirin, Avapro, Isosorbide, Lipitor, Protonix, Zetia & Folic Acid. No Prednisone, Celcept, Cytoxan, Methotrexate or Bactrim right now! However, tomorrow during my infusion of Retuxan, I'll receive 1000 mg of Prednisone - lots of fun! Other than that, I hardly take anything!

05-19-2010, 09:36 AM
I don't know how many WG patients Dr. Byrd has treated. Everytime I see him, I learn more about his qualifications. He worked in a large hospital on the east coast. I was very surprised he's treating 5-6 patients, just in our area. Here's an example of why I trust him: I've lost the sight in my left eye from a stroke. Six months ago, I had sudden blurred vision in my right eye. The hospital emergency staff brought in an eye specialist and others. They were baffled and had no answers. Dr. Byrd walked in and ordered massive doses of Prednisone to counteract the Wegener's inflamation, which saved my eyesight. Within the week, we started Retuxan. Actually, we had been requesting approval of Retuxan treatment from my insurance and they had rejected the request. After my hospital stay, Dr. Byrd sent ALL of my files (8 inches thick!) and asked the insurance specialist, "OK, you tell me what we're going to do!". The insurance company immediately approved the Retuxan. Dr. Byrd is willing to fight insurance companies, even fight them in court. Love that guy!

05-19-2010, 09:44 AM
Sangye - well... it's been a journey. I've had many flareups over the years, 7 years of oral Cytoxan (causing 2 bladder cancers), too many years of Prednisone (now have osteoporosis), kidney involvement at 50-years-old, two strokes, two heart attacks, four stints "and a partridge in a pear tree". OK, so after so many years of health issues, I have a warped sense of humor :)

Someone mentioned strokes and heart attacks with WG patients - we have a propensity to these conditions.

05-19-2010, 10:23 AM
Oh man, Dwight, you've really been through the ringer, and you're so young, too. I have the same warped sense of humor but I had it before Wegs. :D

Why are they giving you 1,000 mg pred for rtx infusions? My Wegs doc at JHU gives 100 mg solumedrol and said the lowest he'd go is 80mg.

05-19-2010, 10:32 AM
I believe there's a conversion from the mg to another measurement that equates to 1000. So it's probably 100 mg which, in any measurement, keeps me awake for the next 3 nights! Which is good so I don't accidentally chew my arm off from hunger while I sleep!

05-19-2010, 10:40 AM
LOL-- it's good to keep your arms. Otherwise you'd have to open public doors with your mouth and I hear the hand sanitizers taste bad. :D

05-19-2010, 01:46 PM
Oh, man! That's a big eeeeyouuuu!