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Hep C Discussion Forum -> On Treatment -> Worst nightmare- forced to stop treatment
Post Info TOPIC: Worst nightmare- forced to stop treatment
K2


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RE: Worst nightmare- forced to stop treatment
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Best of luck Tim. Glad you're feeling better. I do hope that there are no serious problems with your heart and that in the instance you don't achieve svr you have the opportunity to 'nail' this thing with the new meds.

Onward, it's all we can do

KristyX



__________________

genotype 1a. started pegasus and riba on 25/03/2012 added victrelis after 4 weeks, treatment naive. CHC. 4 weeks UND & continue to be so far. Finish tx 6/10/12. Fingers crossed for SVR.
12Step Guy


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See. This is just what I've been claiming all along. It turns us into Pirates. First it's an eye patch and soon it's a parrot on your shoulder.

Having eye problems and having to end Rx may seem like a huge set-back.  I feel your pain; those of us going down this road know the commitment and single mindedness that it takes to stay on RX. Being forced off is bummer. All I wish for you is that when the time comes, you'll find the strength to start again.



__________________

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.
hrsetrdr


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Today is so much better than the last couple days, having two really good nights sleep(10 hr.s uninterrupted last night!) is priceless!  wootj.gif

I think I'm pretty much back on an even keel now,which is just in time, because now my GP wants to see me about my heart.

rolleyesil.gif



__________________

"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

 

 
Sed3


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Wow - sorry to hear that.  no



__________________

Type 1B - Unknown for 30 years, diagnosed September 2011, started treatment February 2012

8 weeks Incivik - stopped early due to rash.

Continuing Pegasys and Ribavirin until January 2013 - 48 weeks

Undetectable from week 4 --> present
hrsetrdr


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LanaiSurferGirl wrote:

Hey Tim!  From what I have read in reasearch it is the interferon that is the culprit of eye problems and they usually clear up once you stop the medication.  You had a good run at 17 weeks and who knows, maybe you will still have SVR after this...it is a new treatment so you never know :)  Stay positive and if you don't achieve SVR your doc is right in that those all oral treatments should be available in the next few years as long as the trials continue to go well.  Keep cool and hydrated up there in Victorville...San Diego is HOT right now so can't imagine what you are feeling up there! :)

aloha,

Meghan

I am cautiously hopeful about the possibility of 17 SVR; that would truly be a godsend...will be anxious to see the next VL lab result.
It'll be another triple digit day for sure.  I am comitted to continuing with a high level of hydration, my two 64 oz. water bottles are a permanent part of my life.  
Judy S wrote:

I'm so sorry Tim; I am imagining how you must be feeling.  I was 100% certain I was done with tx while in the hospital again last Sat; what emotional turmoil! My hope is that you will achieve SVR anyway, with the amount of time you've done.  It is possible!  Interferon affects my eyes in many ways; none good.  My last Ophthalmology exam showed my eyesight has worsened; I had to get new glasses.  You are in my prayers; please keep us posted. 

 

Thanks so much for the thoughts and prayers, I will try to be positive, and focus on "what can be" rather than "what could have been"...

Yesterday was a real bad day for me, went to urgent care and was given a script for Xanex("acute anxiety-extreme stress" ) it is helping but I still get some painful moments.



-- Edited by hrsetrdr on Saturday 11th of August 2012 04:11:56 PM

__________________

"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

 

 
hrsetrdr


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Edited- merged posts.



-- Edited by hrsetrdr on Saturday 11th of August 2012 04:13:19 PM

__________________

"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

 

 
Judy S


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I'm so sorry Tim; I am imagining how you must be feeling.  I was 100% certain I was done with tx while in the hospital again last Sat; what emotional turmoil! My hope is that you will achieve SVR anyway, with the amount of time you've done.  It is possible!  Interferon affects my eyes in many ways; none good.  My last Ophthalmology exam showed my eyesight has worsened; I had to get new glasses.  You are in my prayers; please keep us posted. 



__________________

Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.
LanaiSurferGirl


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Hey Tim!  From what I have read in reasearch it is the interferon that is the culprit of eye problems and they usually clear up once you stop the medication.  You had a good run at 17 weeks and who knows, maybe you will still have SVR after this...it is a new treatment so you never know :)  Stay positive and if you don't achieve SVR your doc is right in that those all oral treatments should be available in the next few years as long as the trials continue to go well.  Keep cool and hydrated up there in Victorville...San Diego is HOT right now so can't imagine what you are feeling up there! :)

aloha,

Meghan



__________________

geno 1a, mother & brother also hep c +...mom got a blood transfusion and passed it along.  Started tx with incivik 11/23/11 and brother started 2/8/2012.  Both of us und. at 4,8,12 and me at 24.  I am going 36 wks and brother is going 48 weeks.
hrsetrdr


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jrc wrote:

I had allot of vision issues myself while on tx, but never said anything to my dr cuz i knew it would prob stop my tx. That probably wasnt smart on my part  but luckily my vision is back to normal again! after 17 weeks there is still hope for svr!

 Wow, pretty gutsy gamble- so glad that it paid off for you!    I debated whether or not to say anything about the vision thing, I wasn't even sure how to describe it or if it was just my imagination, or something like "dry eye".

I am afriad to get my hopes up about anything right now(pretty beat-up emotionally) but I shall quietly hope and pray for SVR @17 weeks...



__________________

"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

 

 
jrc


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I had allot of vision issues myself while on tx, but never said anything to my dr cuz i knew it would prob stop my tx. That probably wasnt smart on my part  but luckily my vision is back to normal again! after 17 weeks there is still hope for svr!



__________________

Geno 1 A Started Tx w/ Victrelis  8-3-11, Viral Load  21.2 Million,  Und Weeks 4 Through 28 ,End Of Tx 2-15-2012 !SVR
hrsetrdr


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jrc wrote:
hrsetrdr wrote:
peanutbutter wrote:
davesf wrote:

Stay optimistic Tim.  Yes, your odds may lower, but they are definitely way over zero in terms of staying UND if you've made it this far.

Best,  Dave

 I agree. I know it's hard but try to stay positive you. One of my favorite quotes is "you never know". Praying good things come your way.

Thanks Mike, I meant to come back and comment on Dave's post;  I did mention to my Gastro doc when he called to give his condolences- he agreed that there was a posssiblilty but we didn't come up with any betting odds.

 sorry for your news ! were u on the 28 week plan? There is stilll hope

 Yes, tonight I would have taken shot #17 of 28, and would have had less than 3 months to go.

 

It's very hard for me to look around at my "on treatment" stuff, and realize that none of it is any longer important.   My water bottles, the pill containers, even my "dart chart" no longer are relevent.   I feel displaced(even worse) and like I'm outside of my life, drifting with no purpose, no hopes, no joy.    I'll expand on all this in a new thread here, in a little bit.



__________________

"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

 

 
jrc


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hrsetrdr wrote:
peanutbutter wrote:
davesf wrote:

Stay optimistic Tim.  Yes, your odds may lower, but they are definitely way over zero in terms of staying UND if you've made it this far.

Best,  Dave

 I agree. I know it's hard but try to stay positive you. One of my favorite quotes is "you never know". Praying good things come your way.

Thanks Mike, I meant to come back and comment on Dave's post;  I did mention to my Gastro doc when he called to give his condolences- he agreed that there was a posssiblilty but we didn't come up with any betting odds.

 sorry for your news ! were u on the 28 week plan? There is stilll hope



__________________

Geno 1 A Started Tx w/ Victrelis  8-3-11, Viral Load  21.2 Million,  Und Weeks 4 Through 28 ,End Of Tx 2-15-2012 !SVR
hrsetrdr


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peanutbutter wrote:
davesf wrote:

Stay optimistic Tim.  Yes, your odds may lower, but they are definitely way over zero in terms of staying UND if you've made it this far.

Best,  Dave

 I agree. I know it's hard but try to stay positive you. One of my favorite quotes is "you never know". Praying good things come your way.

Thanks Mike, I meant to come back and comment on Dave's post;  I did mention to my Gastro doc when he called to give his condolences- he agreed that there was a posssiblilty but we didn't come up with any betting odds.



__________________

"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

 

 
peanutbutter


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davesf wrote:

Stay optimistic Tim.  Yes, your odds may lower, but they are definitely way over zero in terms of staying UND if you've made it this far.

Best,  Dave

 I agree. I know it's hard but try to stay positive you. One of my favorite quotes is "you never know". Praying good things come your way.



__________________

Diagnosed in 2008. Geno 1a. 6 month treatment of Incivek. UND at 4 weeks, and have remained that way as of 2 months POST treatment.
hrsetrdr


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Karen wrote:

Sent to me by a friend today-thought a good time to share.  

"Wisdom ceases to be wisdom when it becomes too proud to weep, too grave to laugh, and too selfish to seek other than itself." --Khalil Gibran

 

 

 Thank you Karen, I shall save that quote in my collection of meaningful sayings.   



__________________

"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

 

 
Karen


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Sent to me by a friend today-thought a good time to share.  

"Wisdom ceases to be wisdom when it becomes too proud to weep, too grave to laugh, and too selfish to seek other than itself." --Khalil Gibran

 

 



__________________

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
Karen


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Tim...Do what makes you feel good..you have earned it. 



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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
packerfan24


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Praying for you Tim.



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Packerfan24
hrsetrdr


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Well, my "stiff upper lip" just cracked, am feeling a bit sorry for myself- I guess lettn' out the poison is somehow good for the soul.   not something I'm used to doing



__________________

"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

 

 
Margo


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hrsetrdr wrote:

To all,

Thank you for your words of kindness and support, means a lot to me. I have mixed feelings about the pre-mature end of my treatment, as disappointing as it is to have essentially 'failed' to reach the ultimate goal of SVR, the flip side it that it's just such a welcome relief to getting away from the side effects of medication.

My gastroenterologist called a while ago this morning, pretty much reiterating that I will make a good candidate for one of the oral-only treatments which are currently in clinical trials.

I shall continue to be here on these forums, to help-if-I-can, to lend a sympathetic ear or just to share life's experiences. For me SVR may be 2 or 3 years away but when that day arrives ya'all here will be the first to know!

Sincerely,

Tim

At least you have another chance with the new drugs. Since you tolerated these pretty well and responded well, you will have a much better chance of curing next time.

__________________

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.
hrsetrdr


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To all,

Thank you for your words of kindness and support, means a lot to me. I have mixed feelings about the pre-mature end of my treatment, as disappointing as it is to have essentially 'failed' to reach the ultimate goal of SVR, the flip side it that it's just such a welcome relief to getting away from the side effects of medication.

My gastroenterologist called a while ago this morning, pretty much reiterating that I will make a good candidate for one of the oral-only treatments which are currently in clinical trials.

I shall continue to be here on these forums, to help-if-I-can, to lend a sympathetic ear or just to share life's experiences. For me SVR may be 2 or 3 years away but when that day arrives ya'all here will be the first to know!

Sincerely,

Tim



__________________

"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

 

 
Iris Dragonfly


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Gosh Tim, that sucks. I am so sorry. 

I hope they have caught any trouble there in time. I have you in my prayers.

Blessings dear,....... Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
JoAnneh


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Yes Tim hope u can continue w some treatment!
Hate this! 17 weeks is a long time.
Keep us posted.
Joanne

__________________

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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Hi Tim...so sorry.  Cannot imagine your disappointment... Thankfully you were able to catch the issue with your eye(s)-that is the great news.  Hang in there...small moments at a time.



__________________

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
news


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Tim,

Good catch on the vision issue. I might not have been so observant. But what a kick in the butt to have to stop after all that time. Please keep us posted. Maybe they will decide you can continue with a portion of the drugs.

Alan



__________________

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!!
reglenn58


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Tim, so sorry to hear. We were so close in time on treatment. Hope you can come back!

 



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Geno type 1b VL=4m started triple treatment April 6 2012. Tryed treatment back in 2007 VL never dropped below 10 HOPE this works
greenqueen


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So sorry to hear this news, Tim. Unfortunately, this is a rare side effect of tx and thankfully it was picked up on.

Please keep us updated.

BIG hug from me aww

Steff xx



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Geno 3a. 24 wks tx 20/10/05 - 06/04/06. Achieved SVR.
Margo


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Oh my, I am so sorry Tim...I am so used to seeing you here and for your endless support. The news came like a bucket of hot water upon me. PLease keep us posted, what is the prognosis on the viral load? What is the chance you can stay SVR?? All the best Tim, it broke my heart...

__________________

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.
mallani


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Sorry to hear Tim. At least your liver has had a "rest" for 17 weeks. Good luck with the next phase.



__________________

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
davesf


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Stay optimistic Tim.  Yes, your odds may lower, but they are definitely way over zero in terms of staying UND if you've made it this far.

Best,  Dave



__________________

All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo
Kellyw


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Sorry, that is a tough blow, but really good they caught it before you had more vision issues, you may yet be able to treat in future? Please keep us up to date on what is happening particularly with your eyes

__________________
Kelly 2b dx 8/11. Tx begun 12/30/11. Apparently had it for decades.
Phil G


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So sorry, Tim. Our vision is important, too. Hang in there.



__________________

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
Shep


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Tim
So sorry you had to stop --but glad you are getting eye issues addressed. Know this must be an unexpected shock. Sending big hugs your way.


__________________

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!!!!
hrsetrdr


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Today I had some ophthalmological testng done, as for the past week I had been experiencing a visual 'anomoly' in my right eye.   I still have more testing coming up in ophthalmology, but the doctor had detected some swelling of the optic nerve.

Tonight the ophthalmology doctor called and told me she had consulted with my liver doc, and the concensus was that I should immediately stop the Pegasys-Ribavirin-Victrelis triple treatment.

So there it is, almost 17 weeks of treatment behind me, and now....what?   I have not yet heard(probably in morning) from gastroenterology, but it looks like I won't be able to finish this particular treatment regimen.

I have yet to react to this emotionally...still kinda numb.



__________________

"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

 

 
Cinnamon Girl


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Oh Tim, what a shock, you must be reeling. .but thank goodness they picked up on the problem, your sight is so very important. 

You`ve done a good long stretch on tx, so that will have really helped your liver.  Give yourself some time for this to sink in, and try and keep your chin up, it`s got to be for the best.  Let us know how it goes. Best of luck to you, hugs, Jill xx



-- Edited by Cinnamon Girl on Thursday 9th of August 2012 07:23:25 AM

__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
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