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Hep C Discussion Forum -> General Discussion -> Fussy!! 48 weeks!
Post Info TOPIC: Fussy!! 48 weeks!
JoAnneh


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RE: Fussy!! 48 weeks!
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Thanks for info On SLS Karen and rinsing w warm salty water too!
I read on line last night that Maji Mouthwash is used by many ppl on interferon!
Doctor has to prescribe it. Hope she knows what I am talking about.
Also, frozen Popsicle are helping my tongue feel better.
Thanks everyone, love my hep friends:) 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!
Karen


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Dave is right about the SLS (sodium lauryl sulfate) in toothpaste.  SLS are known to cause canker sores in the mouth...I find Tom's of Maine more difficult to find w/o SLS since getting involved w/ Colgate-Palmolive.  Which one are you guys (dave/phil) using???  Any none "mint"??? Best thing..read the label.."no SLS"...please...  

Malcolms' recommendation "gargle with salty water"...a tried and true way to sooth and heal.



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
mallani


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Hi JoAnne, For the sore tongue and gums I gargle with salty water. Wish I was on my boat, so I could just jump overboard and get a mouthful. Regular (in my case 3 monthly) cleaning by the Dental Tech. keeps the scale (tartar) in check, so it is easier to clean the fangs.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Phil G


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I had to change toothpaste about mid way thru tx. More gums than tongue. At first just the plain jane colgate without whitening, tarter control, peroxide, etc. That helped a lot. Then to the Tom's natural. Good stuff, just hard to find in my area.



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Geno 1A, VL 1.9 mm, SOT 12/2/11 - Pegintron/Ribavirin/Victrelis, UND since wk 8, EOT 6/15/12 (28 wks), SVR 11/30/12
JoAnneh


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Dave, thank you for the info! Will get gel ASAP and yes I may have thrust too. Go for doc visit and labs tomorrow. And yes will change toothpaste too.
Thank you, 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!
davesf


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Are you getting white bumps on your tongue? Some people get thrush infections during treatment. If so get treatment from your doc. Is your tongue drying out at night from mouth breathing? If so use a dry mouth gel at bedtime. We're also much more sensitive to SLS, the foaming agent in toothpaste. So maybe try switching to a non foaming brand such as Toms natural. Hope this helps. Dave

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All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo
JoAnneh


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I love having y'all! Thank you so much so support!
Also, glad to know Malcomb I am not the only person
sleeping 12-15 hours some days! 14 shots to go....I am jealous
Of you! But we will get to the end! We will keep on keeping on!
Sure is good to know others suffer too! Haha
Xxoo




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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!
Shep


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Hey JoAnne--bless you girl! You have every right to whine or whatever you need to do. Wish knew something about a sore tongue. Hang in there --you are tougher than theses drugs!

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
LUV2RYDE


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JoAnne,

I am sorry your having a ouchy tongue. But sending ya healing vibes your way and clearing this nasty virus for good!



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Geno type 1A Started Abbott clinical trial mid Jan 2013. :-)

Viral load when I started this trial 4.75million  Went 12wks on placebo and started real meds on 4/5/13 after 1wk  on real meds 25 after UND @3wks,6wks.w00t: Done trial 6/27/13 and still UND.

 
Karen


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and don't forget...you have a great attitude and lots of courage to add to the list of blessings..big hug;)



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
JoAnneh


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That's right guys! Got to live one day at a time and after living busy lifestyle it's time for some R&R!
Thank you! Counting blessings.... I have a home, a bed, a husband, 2 dogs that love me and host of friends:)

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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!
hrsetrdr


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JoAnne,

I don't know what to say about your tongue hurting, but I can see that you need a hug, so here goes:     grouphugn.gif      

     A long time ago when I attended a small town church, the pastor had a sign hanging on the wall in his office which read:  "when life serves you lemons, make lemonade". 

  I have never forgotten that, and I will never forget a portion of what you posted a few days ago in another thread: "I find counting my blessings and not my burdens gives me the right perspective! "  this saying has given me the courage to cast off the crutches(Xanax) and return to managing my sanity on my own; for this gift I thank you.   

     Tomorrrow will be a new day, I hope & pray that it will be a better one for you, JoAnne.     



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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
kiwi


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you can handle it mate. one day at a time eh. i know how ya feel, yeh 48 weeks is a long long time out of our lives. i cant tell ya it is gonna get any easier coz it wont, but i can say, after a while, it becomes ''the new normal''', i guess we just get used to how we feel and carry on anyways.

always feel free to whine mate. i got a couple of friends who have listened to me whine for the whole 48 weeks, haha, they would say, '''ya want some cheese with that wine kiwi''' cheeky buggars.

i go for appt on tuesday, hope my viral load results are in by then. ive been so freakin nervous and worried. i hear ya, its like omg i hope its ok after that slog. but ya know what, if it wasnt ok, i almost feel like saying ''bring on the treatment,'' i could do it again. we have no choice. and i lost about 15kg, which is AWESOME. helluva diet, probably wouldnt recommend it. but hahaha im lookin pretty good. and all my jeans hang off my ass, i need a belt or they literally fall off. hahaha. even the last pair of jeans i bought, only bout 3 months ago, are too big now. wooo hooo. now thats a bonus i like.

and yeh, 'why did we do drugs''', yeh mate, same ol same ol for me too. ah well, least we have a chance of gettin rid of it ay.??

spring here, i am gettin a little energy back, so i been busy catchin up on the ton of chores that have piled up coz i didnt have the energy of the ooomph to even bother. and ya know what, thats fine. its all gonna be there waiting for me. no worries,.

take care mate.



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kiwi. genotype 1. started pegasus and riba on 10 nov. VL 17.6 million. (4 weeks VL 1368)  week 15 UNDETECTED... :)
JoAnneh


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Since starting triple tx in May my tongue hurts! And I am on shot 25 of 48! Any suggestions? I use sensitive toothpaste And doc prescribe mouth wash too. Is this staying till I stop tx? I have slept all day after my 25th shot too. To think some stop at 24 Oh I just need to focus and be thankful for any chance to beat hep c! I get VL checked Monday. I need some encouraging that I won't be wiped out all the time. It has allowed me lots of time to study Old Testament. 48 weeks is a LONG time! Wonder what percentage of SVR Do the 48 weekers with geno 1a achieve? I can't bear staying on this 48 weeks to relapse but what choice do we have. I don't want liver transplant. Sorry for whining I am just wiped out after shot 25 and have 23 more to do. Grrrrrrr why did I use drugs as a teenager!! I need to know 48 weekers make it and get SVR! Tomorrow will be a new day, 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!
mallani


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Hi JoAnne, think on the bright side- at least you're not on Victrelis! I completely agree about the Rx length. I've had a bad couple of weeks, sleep 12-15 hours/day, crawl onto couch and watch rubbish TV for the rest of the day. I have this illogical, depressing feeling that my Rx outcome has already been decided, and I'm just making up time doing the last 14 weeks. This probably started when my doc admitted there was now controversy over Rx length for cirrhotics with an eRVR. Previously he was adamant that 48 weeks was non-negotiable.  I'm probably depressed, but as I will not take AD's, there is no point seeing anyone about it. The mental and physical effects of Rx seem to be cumulative, and we reach a point where we say 'enough'! We have to get past that point, stop the 'stinkin' thinkin'', and summons the strength to go on. The forum plays a huge part in this for me, as I feel I would let you all down by saying 'I can't take it anymore'. I can, and will. We can both help each other over the line- XXX Hugs



-- Edited by mallani on Sunday 4th of November 2012 02:49:47 AM

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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
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