hvc treatment (bms-790052)

[philbert58]

I have terrible sores on my tongue, is there anything available to help?

[AWorriedMom]

Ask your doctor for a prescription for Magic Mouthwash. Or, you can make something similar by mixing one part Maalox with one part liquid benadryl. It is soothing and even provides a slight numbing effect. A prescription would likely work a bit better as it usually has something like lidocaine mixed in. Feel better soon.

[sniddo]

i have one ulcer on the side of my tongue for the last 12 weeks. Currently am on Harvoni (new hep C drug). been to several drs who did a brush biopsy which came back negative and tried antibiotic ointment which didnt help at all. It just started bleeding two days back spontaneously and am having pain in my ear and neck on the same side. Anyone have similar symptoms or advise? Been to an ENT, oral surgeon and dentist and all are at a loss for what it may be and keep saying its probably autoimmune. At this point i cant eat or bear the pain and the bleeding is scaring me. I have no autoimmune disease but have Hep C and am immunocompromised bc on this new treatment. HOwever my Dr says the treatment wont cause this :(
im so confused!

[Janee56]

My Oral surgeon told me to get trays made and weekly fluoride treatment from the get go.  If your Tongue is the issue you could have thrush.  Ask doc about MYCELEX TROCHE, a suck and swallow med to eliminate yeast/thrush.  Takes a couple of days. Don't forget tongue scraping and flossing no matter what your teeth look like.  Brush often with a soft brush and just Water to keep those old gum tissues circulating.  
...Dry Mouth can start all of the above problems.  Salagen good for that.  
Hope Some of this helps.  Peace, J.

[cm1958]

Hello,I had the same problem.I rinsed my mouth daily with salt water it helped alot.

[philbert58]

Well bless your heart. Sounds like you're a lot worse than myself.,allthough I'm only at wk6. Yes it is good news  that you're getting real drug. I'm guaranteed real drug since I'm considered non-responder from 1st go round w/soc. Wow same drug and allready at week 12. Thats great. I'm assuming being "randomized again" means you've got your results back from  week 12 testing and everythings clear, for remaining 12. Thats the best news sores or not. I was told that if my viral load was not clear by wk 12 I would be taken off program so you must be clear. Yaa hoo for u. And your getting energy back as well. That seens to be my biggest problem, especially in the am. I'm sure you'll be cleared,cured and ready for new life before you know it. Good to find someone in same study. Good luck and hang in there,

[andrey77]

Hi philbert!

I have the same horrible problem (couldn't eat, drink, speak) and I am also on the bms-790052 treatment. Yes: Biotene, Colgate 'Oral guard', Zilactin-b. My nurse told me that two other patients on the treatment also have it and they didn't expect it in this quantity from the standard therapy. So probably it is from the new drug. And this is kind of good news. Firstly, it means that I got non-placebo. Secondly, this Thursday was the end of 12th week,so I was randomized again. You know, it looks like today is the beginning of new life! Canker sores are still here (it also looks like that they are going away), but I am full of energy!! Probably now I have placebo or lower dosage. I hope this 12 weeks of new drug therapy is enough for clearance:) .

[blondie717]

Hi philbert. I had irritation in my mouth too. Bill 1956 suggested magic rince or wash. sounds good. he can explain it to you better. So my study doc said he had heard of it but had not had any experience with it and he told me what all was in it (and so can Bill1956) I was very upset when he did not perscribe it for me. instead he told me it was from the interferion. and to use ora gell. it took me 2 hrs to realize he was right. I bought it 6 hrs later used it once and im fine, it went away. but that stuff taste like -hit and i swallowerd it too. uck. He said mine was inflamation of the tissue caused by the interferion. I am not in that study but RobertBeWell is. And he is a pretty smart ole dude too. I dont know what kind of sores you have and they may not be the same as mine. I have heard of canker sores??? or cold sores??? that may require some sort of anti fungal??? Hope your feeling well soon, try the ora gell if that is the soonest relief you can get, it cost 2.50 at a dollar type store...and hook up with the names mentioned. Also I see my doc 1 X a week. So im assuming you see yours often too, call him

[nygirl7]

I learned quite a bit from 1st treatment but never got the sores on tungue figured out"

They are from the interferon.  Two weeks after you end it they should go away.

[EyesofBlue55]

I think Blondie717 is also in this study

[willbb]

Hi there

I just came on and noticed your post mentioning you can" t seem to find anyone in this study.
I am in that paticular study. If  you like go to my profile and the "send a message" link and let me know how things are going for you!

All the best...WILL

[philbert58]

Hi Jaz, Thanks for the advice. I'm presently 4 wks into my 2nd treatment.(bms-790052). My first was about 21 weeks of soc which I believed to be bociprivir plus soc.Was the only unlucky one to get placebo. I learned quite a bit from 1st treatment but never got the sores on tungue figured out. I'm sure drinking a lot of water helps but I just don't seem to be as thirsty as pre treatment. I did find that sun light or tanning salon type deals helped lesions from anemia. I lost about 40lbs in 1st study so I'm taking caloric supplements and trying to eat like a pig to combat weight loss. Did I understand that you are also in bms-790052 study. I can't seem to fine anyone in this particular study. Thanks and good luck...

[nygirl7]

I had them horribly as well and nothing really helped me but within two weeks of stopping the interferon they were gone (which shows how quickly at least that stuff gets out of you!)

I'm sorry I dont have anything helpful to say just know that you aren't alone with those dumb ulcers I sure hated them!

[paen53]

Boy, I can empathize with you on this one. I had horrible sores down the sides of my tongue towards the end of tx-  on top of the ever present breaks in the corners of my lips. Like the others say, good oral hygiene is so important, but at times like these , it seems to irritate even more. Biotene was too harsh for me by then, but I used a blend of salt and soda in diluted in water recommended to me by my Dr. and friends that had been through chemo. The miracle mouthwash really made things more bearable though by numbing the pain. You need an Rx for it, but it is worth every penny.

On a positive note, they were the  first of my sides to subside after tx - and very quickly!

[viaduk]

I also expereinced the mouth sores during both treatment attempts.  They were ultimately diagnosed as oral lichen planus.  You should probably mention these sores to your treating doc, and also see a dentist or oral pathologist to accurately diagnose what these sores are.

Jazzy's advice of water and the use of biotene toothpaste is good.  You will find that the biotene toothpaste will not irritate. Good oral hygiene is very important during this time, but also very difficult when your mouth is hurting. You can get it at walmart/target/cvs/ etc.

Another thing that helps me when it is really painful is a compound called "magic mouth wash."  Your doc has to prescribe it and the pharmacist will formulate it.  It greatly relieves the pain for about 15-20 minutes (kinda numbs it) so you can eat your food pain free.  Try to google it and you can learn more,

I hope this helps.   Mouth sores seem to be a common sx, but they are somewhat treatable, at least to a point where you can be more comfortable.  Good luck to you!

[jazzy578]

Hi, I am on treatment, too and had really red sores which made my tongue swollen and raw.  I looked it up on the web and found out that if my sores were white, then I probably had thrush, a bacterial infection. So I bought a mouth wash for dry mouth called Biotene, as welll as their toothpaste and then I made sure I drank at least 64 oz of water each day and I have kept the raw tongue to a minimum.  My guess is that the meds which dry out our bacteria-fighting saliva causes this problem so that the extra water and dry-mouth mouth  wash eases the discomfort.

However, if your sores are white you should go see a doctor.  If the above doesn't work in a couple of days, you should probably see a doctor anyway.  It is very uncomfortable, expecially when eating certain foods.  

I hope you are able to resolve this problem quickly.  

Jazzy