Mouth sores have become UNBEARABLE, please help

[hepcgetlost]

Hi - hope everyone is well. Haven't been here for several days because I've been struggling with ulcerations inside my mouth that are making me nuts. The pain is awful. Prescription lidocaine does help...for about a minute...okay, maybe three minutes, and then it wears off. Eating (except for jello or ice cream is intolerable, and I can only drink with a straw. Even moving my mouth to speak is painful.  It's even hard to drink the required amount of water and of course that's just making everything worse, because every part of my anatomy is dry and parched and itchy,  As I recall, Audrey had a terrible bout with this...did it get better? What worked for you? This feels worse than all the other sx put together because it's unremitting. I'm exhausted from dealing with it and I don't want to see anyone because talking is a problem. If this is a side effect of treatment, what does it mean? (anything to do with blood counts...just had my 12 week labwork done and am waiting for results...the tests at 8 weeks showed all my counts going down, but "nothing to worry about at that point"  the nurse told me four weeks ago. But I didn't have mouth sores like this then either. I wish I could take something to sleep until it goes away...

Oh, and did I mention that the irritation of it all is making me downright miserable to be around? Hard to feel positive today. Sorry for whining, but I am a total  mess. Any help, suggestions, magic potions welcome. I hope no one else is going through this right now. It is terrible. Thanks for listening.  Judi

[CYSCO]

my husband has had hepc for almost four years. he has completed two rounds of treatment,combination therapy treatment. the hep c is currently active. mouth sores come and go,sometimes he has a condition called harry tongue. i am very releived to find this site,i hope everyone here is doing well and following the doctors advice as well as you can.

[hepcgetlost]

Wow, great suggestions. Wanted to let you all know that FINALLY, the ulcers are disappearing...I think it's been the combination of everything, especially the yogurt. Or maybe they're just done with me for now. In any case, I'm greatly relieved for the moment and I can eat and talk. I'm going to continue with biotene, yogurt, lots of water, L=Lysine, and try the kaopectate too. Right now I'm back to dealing with my very upset stomach...but it's a picnic compared to the mouth sores. I don't think I could have taken much more of that. Love you all. Judi

[audreywald]

There is a medicine, it is a pill for this sort of reaction, please those of you who are really suffering, ask your doctor. It is called Famvir, it usually works.

This is the worst side I had, I damn near stopped tx because of it, and I was off Riba for a week. I think it does not have to get as bad as mine did, but you need to talk to your liver docs about this medicine. I still am on 800 mg of riba instead of 1200 because of this side. I waited about 5 or six weeks.

Don't do like I did, do as I suggest, call your docs. (lol)

[cheriums]

Another thing which is helpful for me is tincture of myrrh.  Didn't mention it before, as many may have trouble finding it.  It's an herbal, would be found in a health food store (or on-line similar shopping).  Myrrh is a natural antibiotic and antifungal, and very potent.  The hard part is that it stings.  I grimace and bear it, tho, because the mouth heals faster -- whatever the affliction -- when I use it.   I mix the tincture with water to dilute, and use as a mouthwash while brushing my teeth. (Then before bed & sleep, swish and spit or paint on, either Magic or Kaopectate.)  .. Three years in treatment?!? ... It's also true that people with inflammatory diseases of the GI tract are prone to having Recurring Apthous Stomatitis (i.e. canker sores) -- I had them off and on for years before I started treatment.  The difference = treatment has made them worse (more painful), more numerous, and constant.

[cindyazure]

I have always rubbed salt into canker sores all my life but now on tx I'm too sissy for that; can't even pluck my eyebrows anymore so you can imagine what I look like.  Someone here once said that sunglasses are an essential part of our tx; now more that ever.  I'll try the milk of magnesia thing next but I have sores INSIDE my tongue.  Don't know what to do for that.

[britpeter]

Past2/3 weeks...thrush,ulcers,swollen tongue creating minor speech difficulty,really awful but I don't/won't give up. Here's a tip to help the inner life of this horrorshow called combination....try Healing pt1, Healing pt2 and pt 3 from Todd Rundgren's album "Healing" and enjoy the rest...the harmonics CAN help and so can the Silence. Be still, get well...ALL OF US....PLEASE GOD. Shalom, Salaam, bonjour/nuit, peace be on all of us!!!

[layla]

I find the anti fungal med working for you very interesting. About the 3rd month of tx I developed a rash that didn't sound like anything here and went to my PG. It looked like a fungus, ringworm like. He scraped it and it was negative but he also thought it looked like a fungus so he gave me an antifungal cream to try anyway and it went away in 2 days. It starts to come back in the exact same spot now and again and when I put the cream on it it goes away. Have a good day LL

[mikesimon]

This is one side I have had throughout nearly 3 years of tx. This last round the sores are on the inside of my cheeks. The ONLY thing that works for me (except magic mouthwash which alleviates the pain temporarily but does nothing to heal) is NYSTATIN. This is often prescibed for thrush, and though I know I don't have that, this stuff works if I use it daily. I've had fungus tests and I don't show evidence of any type of fungal infection. I have no idea why this works for me but it does. If I stop it the sores return and get progressively worse. Mike

[cheriums]

Most of the ingredients in Magic Mouthwash can be bought over the counter:  Benadryl liquid/ diphenhydramine elixir (look in the children's allergy section) 30 ml, calcium carbonate + magnesium hydroxide liquid (= Mylanta) 60 ml and sucralfate (Caratate) 4 G/ 40 ml.  This last is the Rx ingredient.  My doc gave me an Rx for a large bottle, as it's less expensive for me to buy the ingredients and mix it myself.  You can add, and I highly recommend this, it will surprise you:  Kaopectate.  Buy the brand, the "real" Kaopectate; the new flavor is like coffee flavored ice cream.  I suggest trying the Kaopectate alone, as soon as possible.  It is not only soothing, it helps the ulcers heal faster.  Really.  It stimulates the regrowth of the cells which line the mouth.  Amazing but true. I "swish and spit" or paint it on with a saturated Q-tip.  Do switch to Biotene or another toothpaste which does not have the sudsing/foaming ingredient SLS (sodium Laureth/Lauryl Sulfate) -- very irritating. Some believe it causes mouth ulcers/ canker sores. Jason naturals line toothpastes are all free of it.  Stopping taking vitamin C helped me a LOT (was actually mouth ulcer- free about a week later,to my amazement, and tho I have one now, it's only one small one which started after I got bold and ate salty chips ... after so long not able to, it was too tempting!) Yes, as you can probably tell, you have more than my sympathy, you have my company. Nobody wishes you good luck more heartily!

[cuteus]

Hey, he is around, list your addy in the contact pts list or e-mail me on it.
take care

[audreywald]

Please ask your doc about the "famvir" I waited so long it did not sure me but it can cure you. Don't let this torture continue if you do not have to.

[hepcgetlost]

Happy spring. Maybe the changing weather will make these mouth sores disappear.

I did eat yogurt this morning. I am using biotene and lidocaine and drinking my water with a straw. Tomorrow morning I'll call the doctor to ask for magic mouth and some of the other stuff you guys have mentioned.

I wake up every morning hoping the sores are healing, but if anything they're worse. The lidocaine does help a lot, but only for a few minutes. As soon as it wears off, life is miserable again. I wish I had better news... I'm so grateful for all your good suggestions and encouragement. Thank you all so much! Even though the mouth sores are still there, your support does make it all a little more bearable. Blessings of good health to every one of you. Judi

[liv4GOD]

ihad them bad, my gi told me about the yogurt not the lite kind. fat free yoplait original any taste you like,it worked for me.  liv4GOD      ROBERT

[susan400]

Oh, I just forgot to say it previously, but I wanted to echo the eating yogurt remedy.  I eat 4 tablespoons every morning of the plain yogurt.  I had originally started that for the yeast problem, but it helped prevent mouth sores, too. When I used to be a smoker, I'd get them frequently but I've been quit not for about 9 years and I don't get them so often now.  

By the way, someone asked who else was 1A/1B,  It's me!!!

Susan400

[audreywald]

I also got biotene toothpaste which hurts less than most toothpastes; so does rembrandt toothpaste for sensitive teeth.

For me, nothing really CURED it; it is still here but berable now. I am hoping that the regime I am on now will keep it manageable. They are mostly all over my tongue, but there is a stubborn area at the corner of my lip that has it too,

This sucks.

[lackalustre]

my mouth was terribly painful with sores on the tongue too.  the thing that helped me the most was a solution of food grade hydrogen peroxide solution.  rinse your mouth with it and i even brushed my tongue with it (when it isnt so sore)   it helped clear up my mouth and i used it to keep the sores under control all during treatment. i still use it every nite even off treatment now.   you can purchase it in health food stores and it has the mixture solution on the label.  or maybe you could find it on the net with a search.
   i also used biotene toothpaste.  it is milder and helps with dry mouth.  even so i got some new spots of tooth decay while on tx.  dry mouth i guess and some fractured fillings.

[jg2001]

I just wanted Befud's message to be heard louder!  Happy B-day!

Jamie

[cindee]

Hey I too "feel" your pain. I had a horrible time w/ this while on tx. I was prescribed "majic mouth". It worked for me...it has lidocaine and a few other meds in it. I was also prescribed diflocan....it's for yeast infections. I only had to take 4 pills during tx. It was the miracle drug for me, along w/ the majic mouth. Also DO eat yogurt....everyday!!!!!! This sounds gross but I couldn't brush my teeth some days because of the mouth sores. I agree, this is one of the bad sx. I wish you the best....get  the meds and eat your yogurt!!!!!! Let us know your progress. I will be praying for you. Cindee

[litecloud]

THere was a crooked hepper
Who walked a crooked mile
She found a hepper sixpence
against acrooked stile
She bought a hepper cat
who coughed a hepper mouse
They all did pegs together
in a little hepper house.

Sorry I could not help myself after that joke,which was funny by the way.
Hope everyone is enjoying their weekend and doing well
God Bless

[kojak66]

After using some horrid over the counter witches brew that the nurse practioner suggested, I tried some "Oxyfresh Dental Gel" that my sister who runs a dental clinic sent to me.  
Go to www.oxyfresh.com or call 1-800-223-7374 for more info.

[cindee]

Hey Hep C family....got to pass this joke to you all!!!!!

A college professor was doing a study testing the senses of 1st graders, using a bowl of lifesavers.

The children began to say: RED...Cherry, Yellow...Lemon, Orange...Orange  Green....Lime.  Finally the professor gave them all a honey lifesaver. After eating them for a few moments, none of the children could identify the taste.  "well, the professor said, I'll give you a hint, It's what your Mother may sometimes call your Father."  One little girl looked up in Horror, spit out her lifesaver and yelled, "Oh my God!!!!! They're assholes!!!!!!"

Okay soap for my  mouth now! Sorry I couldn't resist this one from my "crazy" sis.   Love ya'll, Cindee

[painted**posies]

Ah Ha!  I read somewhere that toothpaste with laurel sulphate (might not be spelled right)in toothpaste will aggravate the mouth sores. They suggested natural kinds, like Tom's or any toothpaste without that ingredient...and there are only a few that don't have it as an ingredient.  I quit what I was using and switched to the kind of Sensodyne that doesn't have that ingredient and while it certainly didn't heal the mouth stores, it did not excerbate the pain I was already experiencing.

Right now I don't have mouth sores. But I have restless leg syndrome which is driving me nuts. It is really really bad right now and if I don't take meds, I don't sleep for days.I take Requip which is used for Parkinson's which makes my legs calm down so that I do get some sleep. The downside is it's not good for the liver and it causes nausea. My dilemma is always do I suffer from sleep deprivation and pace the floors 24/7 or do I take drugs that I know will harm my already fragile liver and at least be able to rest some.  For now, I'm taking the meds because I just had to have some rest. It's hard to decide which is worse, the thing that's bugging us or the thing that's curing us.

I hope your mouth sores are gone quickly.

[hepcgetlost]

thank you all so much...I'm going to try everything. I'm actually feeling a little better tonight--if I stay very still and don't try top interact or talk it's bearable for awhile...at least while the lidocaine works.  Audrey, when I brush my teeth...and I brush them as often as I can, it's painful...how do you do it so often and bear it?? yes...this side really really bites!
judi

[audreywald]

More tips:

I began to take folic acid and L Lysine. both ae recommended for mouth sores. Oral Gel helps a bit. I use biotene mouthwash right after brushing my teeth. I also brush after I eat anything at all.

LOTS of water. LOTS of it. I think this happens at least partly from the dehydration of the riba.

If I think of anything else I will let you know. Most of these tips, I got here.

This side really bites, doesn't it?