sides

I am so frustrated right now it is almost too much. My tongue and mouth are so inflamed it is nearly unbearable. I have white spots, red spots, it burns all over feels and looks  like it has been lacerated. I called my doc's office and requested the "magic mouth" - they gave it to me. I am already halfway through with some antiviral to fight this side, but so far no better. They are going to take me off the riba for a week if I don't start improving by Monday.

I hate to moan so much but I cannot tolerate much more of this particular side.

Any other suggestions? I really do not want to give up.

[jg2001]

I really don't think you're moaning.  From what you have been describing, it sounds terrible and painful.  I wish there were something that I could do for you, but I am at a loss.  The best I can do is to pray, wish and hope that this subsides and you feel better.  This must be all consuming.  I would image that its interfering with your nutrition, fluids, sleep and pretty much everything that you do...everything that you need to stay on top of to fight this disease.  Just to let you know that we're listening and pulling for you to get through this.

Jamie

[raheem]

Sounds painful.  I've been using Biotene mouthwash and toothpaste to keep my mouth and gums from stinging and burning.  Also, I've swished around in my mouth normal saline or salt water(not too salty) to get rid of a canker and tender irritations. I've heard others swear by the "Magic Mouthwash" but I don't seem to need that as of yet.  You might want to try staying away from acidic food and beverages too.

[lackalustre]

i tried many things too for mouth sores while on tx.    the thing that helped me most is a solution of food grade hydrogen peroxide.  i rinsed my mouth several times a day and even brushed my tongue with it.  i kept it under control with this same solution the whole time while on treatment. some of these sides may make you want to quit treatment but dont quit!

[DH Bill]

Hang in there! I do think it will get better. If I drink a coke it still burns my mouth and throat but it is way better now than at first.

EVERYONE! Thanks for all the threads. The last 6 weeks or so have been very hard on me and my wife and I was starting to feel really crazy due to how I have been reacting lately but after reading today I feel like I'm OK. Thanks

[cindee]

Don't give up on the majic mouth. Use it as many times a day as you can. I know it is nasty tasting, but give it a few days. I am praying it will work for you. Did you ask for some diflocan?? It will help to speed up this process. Best wishes and much love, Cindee

[new-sojourn]

Sounds like THRUSH to me.  This is one of the many opportunistic infections that can take hold when immune systems are suppressed or highly taxed. Common in children.  Many herbal teas and especially green tea have anti-fungal and anti-viral properties.  Hydrogen peroxide or Tom's of Maine's mouthwashes are also good.  The h peroxide is the most cost effective and readily available.  If it is thrush, a doc can treat easily.

[doll face]

I started to get something similar and my doctor provided me with a prescription for myclelex 10mg in case it got worse. Luckily I haven't had to take any. He said that thrush is very common on theys meds were on .

Also for those of you with extremely dry mouth they suggested biotene oral balance which is a mouth moisturing gel, and sold in most drug stores in the mouth care section. It runs about $5 a tube and does seem to work good for me.(especially in the middle of the night when I wake up due to dry mouth)

Good Luck to everyone.      Kim

[harley dude]

Cindee, I asked my GI to get me a rx for Magic Mouth Wash and all he told me he never heard of it and gave me a rx for some thick paste stuff(it's like spreading peanut butter on your tounge and it doesn't even work- if you don't mind could you find out a little more info on this for me like maybe the medical name or something I can tell my GI so he can call it in for me- Thank's-- HD

[cindee]

Sure I'll try to help....on my bottle it says  

LIDOCAINE/ALLER/ANTAC

I hope this helps...if not let me know and I'll call my GP and get a better name if you need it. Good Luck and God Bless, Cindee

[cindee]

I forgot to tell ya to also ask you doc for some diflocan...it is used for yeast infections....My doc gave me 4. They lasted thru my whole tx. One will usually work, but give it a couple of days....maybe 3 or 4. Then take another. It will work and it stays in your system for a while. Also eat yogurt...that helps keep yeast infections down. Let me know how you are doing. I will continue to pray for you. Cindee

[britpeter]

I can really relate to what you're saying. My big fear was deep depression but I too have been feeling a bit 'speedy' sometimes. I have also had strange tongue sensations and a very sensitve mouth, gums and teeth like Audreywald but nowhere near as bad cos no signs of fungal, ulcers or anything...just a kinda sore tongue. I just did #7/48 and if last week could be copied, I'd take it any time as I had a week with less noticeable sides.
GOOD LUCK TO ONE AND ALL!!!

[audreywald]

Thank you all for suggestions. I am going off the Riba for a week, I called my "be in charge" nurse and she gave me a few more suggestions: rinse with salt water every 2 hours, liquid diet, drink with a straw, very soft toothbrush, brush 1/2 hour after meals. Brush roof of mouth to.

I have never given my mouth so much attention as this.

A week off the riba, they told me, will not hurt my tx. I got the "magic mouth, I have another rinse that you "swish and spit" and I am on a pill, an antiviral for mouth sores.

This side is my suckiest side yet, because it is constant.

[DownThisRoad]

I've never really had mouth sores during my 43 weeks of treatment however early on my mouth was so sensitive to  toothpaste.  When I would brush, my mouth and tounge were burning so badly that I couldn't continue with my regular toothpaste.

I tried a couple of different brands right away but nothing was allowing me to brush with toothpaste properly.  Someone mentioned (I think it was Raheem) quite a while back about the Biotene mouthwash/toothpaste products.

I bought the toothpaste and have used it every since.  No stinging or burning and really leaves my mouth fresh.

Try it.  You can get it a Walgreen or local pharmacy, maybe the grocery stores.

[simpleman]

If you are feeling speedy be greatful. I also Had a hard time getting my brain going in the morning. I took to playing spider solitaire for a half hour or so. It seemed to help get my mental processes working and if I messed up absolutely no harm was done. I'm so greatful I didn't have stuff like the mouth sores. Sounds horrible. That's what is so great about this forum , someone probably has had the problem before and can tell you what they did. For me the simplest solutions were always the best. Even though thwy've never met you people really do care. I am PROUD to be a member. Good luck.