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Post Info TOPIC: Sore tongue


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RE: Sore tongue
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Nic,
Thank you for the zinc suggestion!
Will call Doctor about it.
Hopefully it will work for me too!
I bought sugar free pops and they made
My stomach hurt.
My tongue likes Popsicles like a finger that
has been burn wants to stay under cold water!
I started tx in May finish in April!
Thank you VERY MUCH for zinc suggestion
JoAnne

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!



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Wow - I have been suffrring from a sore mouth, sinus drainage and the awful taste in my mouth, even affecting my sense of smell for weeks. Maybe since Sept (started tx in July) but no real answers. Tried all different kinds of mouthwash and toothpastes with little success. Sugar-free popsicles help the burning. My family doc suggested I try 50 Mg (1 tab) of zinc per day and it seems to help tremendously.

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Diagnosed 1997, Genotype 1b, unsuccessful tx in 1998 (interferon), 2004 (interferon & riba). Started victrelis/interferon/riba 7/20/2012, finally UND at week 24, will continue for 48 weeks. EOT 6/20/2013 UND, 12 weeks post tx Relapsed



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Popsicles and staying away from tangy and
Spicy food has helped my tongue and throat!
Hope it stays improved.
Douglas, I hope your pain improves soon!
Everyone needs love, support, empathy and
Encouragement. I wish all of these upon you!
Hope u have a great day today:)

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!



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Hi did you always have a lower blood count on Tx.? Or did it start after awhile? You must feel beat. You are a trooper! God Speed!


 No, my blood started lowering during treatment and yes I am completely 'drained'. I don't know where my energy went but sometimes I can walk a few steps and I am out of breath so bad and so weak. I have had 7 back operations and already have leg/back pain so bad. Been on Oxycodone and Morphine for quite a while after trying other 'loopy' meds. I also have a Dorsel stimulator 'installed' for the leg pain which was working until I started treatment. Sometimes pain is so bad that I just don't want to move and stay in bed all day long.

By the way, I am just stating how treatment has been affecting me, I am not looking for 'sympathy', I can find that between sh!t and syphilis in the dictionary  biggrinsmile



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@ Mark sorry for the theft .. that stinks, hope things get settled.. 

@ Jo Jo .. I am having the DRY throat, use the biotene, sinus drainage  is awful constantly clearing my throat or spitting up junk gross, it's clear no infection..  got a humidifier for my room, gargling with salt water and eating yogurt and using that saline nose spray stuff.. my nose so dry and sore it has been the whole time I started treatment. PA didn't seem to think this was any concern?

@ Butch hang in there dude.. just keep an eye on your hematocrit.. 

 

all the best and hang tuff MJ



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Do not go where the path may lead, go instead where there is no path and leave a trail.Ralph Waldo Emerson

1a - VL 22 million  F2- IL28B- CT / Inck-Riba- Peg triple therapy 9/15/12 UND 4/8/14  8 wks BT ..3/1/2013 done! 3wks Post UND



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Mark, you are so right! Let someone else take care of Your company 'baby' never works For me. Sorry to hear you were robbed. Hopefully you and your wife will have a Better Christmas next year when u r off The med.

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!



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JoAnneh wrote:

I have coughing attacks too. Only help is water, water, water. It can be annoying. It's the RIBA! My throat will get so dry at times And I drink a lot! Wow, we are both in the 30 weeks. Great time w the family for Christmas! The excitement gave me energy. We have our first grand child a boy! So extra special and we now have a baby lab too. I hope u were able to enjoy Christmas w your family too. Are you able to work?

-- Edited by JoAnneh on Thursday 27th of December 2012 05:18:19 AM


 Sorry it took so long to get back, some equipment was stolen from my home yesterday and i spent last nite dealing with police and the insurance company. I am able to work, my brother and i own a company(unfortunally) and if I dont work it just makes it harder on everyone. My brother has been very understanding and absorbs a lot of the pressue off me while i've been on treatment. As a former business owner you know there is no way you can just sit back and let someone else take care of your "baby".  My wife and I didn't really celebrate x-mas this year, just not felling it. We just relaxed and enjoyed a rare white x-mas in N.Texas.



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Butcheeyboy wrote:

JoAnneh wrote:

Butch, so u r in week 34-35 and telling us your whole mouth Is a fire pit. Throat too? How long Has it been hurting? Has it increased in the past Few weeks? Thanks for joining in! Now there are three Of us. We are all in weeks 30 too

-- Edited by JoAnneh on Thursday 27th of December 2012 05:09:22 AM


 Yes the throat has been sore as well. There seems to be a 'hole' in the roof of my mouth also, not a big one but it's been really sore.

Went for blood work this morning and the Dr. called me within 3 hours and said I was more anemic this week than last and lowered

my riba down to 1 pill in the AM and 2 pills in the PM. She keeps asking if I want to continue with treatment. All I can say is that I

have come this far and gone through hell and back with all the side effects, viral load has been NEG. for weeks and I am not giving up!! no


Hi did you always have a lower blood count on Tx.? Or did it start after awhile? You must feel beat. You are a trooper! God Speed!

__________________

25 yrs HepC. type 1a geno. 6mill viral load,3.5 out of a 4 liver biop.started Sept.19, 2012,Tx.Rib.,Incivek, Peg,4wk. Vl 61,undetected @12 wks,undetec.Wk 24



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JoAnneh wrote:

Butch, so u r in week 34-35 and telling us your whole mouth Is a fire pit. Throat too? How long Has it been hurting? Has it increased in the past Few weeks? Thanks for joining in! Now there are three Of us. We are all in weeks 30 too

-- Edited by JoAnneh on Thursday 27th of December 2012 05:09:22 AM


 Yes the throat has been sore as well. There seems to be a 'hole' in the roof of my mouth also, not a big one but it's been really sore.

Went for blood work this morning and the Dr. called me within 3 hours and said I was more anemic this week than last and lowered

my riba down to 1 pill in the AM and 2 pills in the PM. She keeps asking if I want to continue with treatment. All I can say is that I

have come this far and gone through hell and back with all the side effects, viral load has been NEG. for weeks and I am not giving up!! no



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Guru

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I eat yogurt but have started back daily! Thanks for the idea

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!



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Yeah I had a sore mouth/ tongue. I starting eating yogurt more and it went away.

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25 yrs HepC. type 1a geno. 6mill viral load,3.5 out of a 4 liver biop.started Sept.19, 2012,Tx.Rib.,Incivek, Peg,4wk. Vl 61,undetected @12 wks,undetec.Wk 24



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Week 34 or 35, but any way my whole mouth is like a 'fire pit'

Everything I eat seems to be spicy and the sore throat

Just thought I would give my bit of drama cry



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JoAnne, i'm on week 30. I'm to see my Dr on the 10th for a quick look over and to get orders for more blood work. I need him to look at my throat, i also have a nasty cough i need checked out, it just comes out of no where. Just fine 1 minute then coughing my head off. I been putting my visit off as long as possible, kinda good at giving advise, not so good at taking it. Did you have a good Holiday with your family?



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KCCO

 

 



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I read awhilr ago that if rash spreads down the throat They may stop tx, that's my big fear! We can deal w discomfort; that's normal On tx, but we just want to make it to the finish line. I am calling and reporting to my doctor tomorrow. Has your doctor seem your throat?

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!



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Mark, So glad I am not alone in this! On week 32, sore tongue comes And go w pain but throat bothering me Now. I looked in mirror and there are blisters At back of my throat. My NP told me last visit that people who Have sore tongue keep it on and off thru out tx. I drove to grocery store in 35F to get Popslice. I read that popslice numbs the tongue Works great!!! Which week are you on?

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!



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JoAnne. I've been having the same problems, I'd hoped it was the Incivek but that came and went and the raw mouth stayed. My throat  feels raw and sore also. I think it's worse now because of the cold, dry weather and having to run the heat alot. It kinda makes sense, or maybe I'm just grasping at straws.



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Not only does my tongue hurt now my throat
Is tender and hurts when I swallow.
Maybe I am getting sick or rash is
At back of my throat.
Popsicles help, using mouthwash, Biotene products
And warm salted water.
Blah.... Guess all the fun of Christmas and
Family time has caught up w me.
JoAnne


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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!



Guru

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Butch, so u r in week 34-35 and telling us your whole mouth Is a fire pit. Throat too? How long Has it been hurting? Has it increased in the past Few weeks? Thanks for joining in! Now there are three Of us. We are all in weeks 30 too

-- Edited by JoAnneh on Thursday 27th of December 2012 05:09:22 AM

__________________

JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!



Guru

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I have coughing attacks too. Only help is water, water, water. It can be annoying. It's the RIBA! My throat will get so dry at times And I drink a lot! Wow, we are both in the 30 weeks. Great time w the family for Christmas! The excitement gave me energy. We have our first grand child a boy! So extra special and we now have a baby lab too. I hope u were able to enjoy Christmas w your family too. Are you able to work?

-- Edited by JoAnneh on Thursday 27th of December 2012 05:18:19 AM

__________________

JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!



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Thanks Jime, i am so happy that u are almost finished w new trail med.
What a brave spirit! Seems like it has been pretty easy compare to Triple tx.
Doc pushing for 48 weeks that's April!!! You should have your 6 month post answer
By March or close to it. I Can't believe how well y'all felt on this trail even swimming etc...
I wonder when we will see this drug on the market.
Thanks to you, Vicky and ur other friends it will have opportunity to BR on market sooner.
Thanks for the encouragement
JoAnne

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!



Guru

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I carried a toothbrush, toothpaste, and a bottle of mouthwash with me at all times. I brushed my teeth every 2 hours if I could. It helped but it really didn't clear up until about 2 weeks off the Incivek. Hang in there.

__________________

jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 



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Try BIOTENE items - touthpaste, gel, spray etc. - for dry mouth symptoms.



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Gen. 1b. 1st Tx in 2003 Rib/Peg. Biopsy F3-F4; 2nd Tx started 2/28/12, Pegasys+RibaPak+Victrelis for 48 weeks. VL: 260,000 (starting), 125,600 (4 weeks), UND-weeks 6-45.EOT 1/7/13 after 45 full weeks. Post Tx 4,12,24 weeks -UND  SVR!



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Captain 12-step u try that mouthwash 1st! :)
Alan and Margo, Food isn't tasting as good as it use to,
My tongue a d taste buds are my main symptom....today!!
I have been feeling human again, yet today has been a laid back day.
Alan how did u work full time??? Bless your heart.
Love my hep c pals
JoAnne

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!



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This too shall pass, my dear friend. I guess I had two different bouts of ulcer-like symptoms in my mouth during treatment, making eating even more difficult. But it went away all on its own. It actually got to the point where I would be anxious to see the next stupid side effect. Not that I expected to enjoy them. I just loved to see what they were. Never a dull moment on the Incivek triple. Alan

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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!



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Hi Joanne, I've had that on incivek. Give it another few days.

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Geno 1b, relapsed in 2009 a week before my treatment was to be over. Started triple therapy on April 28th, 2012. UND at week 4,8,12,24,3 months post tx.



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Is anyone having problem w tenderness in their mouth and tongue. Makes eating anything w salt hurt and uncomfortable to chew cereal, nuts etc... Any ideas?? I am using sensitive toothpaste. Just finished Invicek a week ago. JoAnne

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!



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Maybe others can chime in on this, not sure of the % or strength but most Pharmacys can make it up.

Super Miracle Mouthwash"

1. Benadryl
2. Lidocaine
3. Hydrocortisone
4. Tetracycline
5. Nystatin -- antifungal



-- Edited by 12Step Guy on Sunday 19th of August 2012 12:45:20 AM

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Genotype 1a, IL 28 = CT  Interferon and riba 48 wks in 99, Daily Peg and Riba 18 months in 2007, Started Incivek, Peg, Riba 6/21/12. 4th stage cirrhosis. Last Dart will be May 23 2013.

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