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Hep C Discussion Forum -> Post Treatment -> Shifting gears
Post Info TOPIC: Shifting gears
hrsetrdr


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RE: Shifting gears
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Iris Dragonfly wrote:

Hey Tim, I too am glad you will be staying on..Hang in there, I'm pulling for you!  BB, Iris

 Thanks Iris!   wootj.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

 

 
Iris Dragonfly


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Hey Tim, I too am glad you will be staying on..Hang in there, I'm pulling for you!  BB, 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)
hrsetrdr


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Karen wrote:

Well Tim-I am certainly glad your sticking around.. I think I am one of the very few on this forum who has not done treatment.  So...It will be you and me kid waiting out the new fancy drugs.  We can keep each other posted on trials and info as it comes across the press...and pop a NADH (discussed in an older post)every once in awhile to get enough energy to dance the night away...

Keep smiling...hope you feel a little better each and every day..

 Karen, I did not realize that you were not on treatment(maybe just my brain fog), so you are waiting for one of the 'pill only' treatments?   Rest assured, I'll have my ear to the rail, and you'll be the first to know when something good comes down the track.       Speakting of NADH, whoa- you were right!  I was all over the place that day, I was just beat though.   

 

I'm on the mend, promised myself no more "downer" thinking.   wootj.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

 

 
Karen


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Posts: 396
Date:
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Well Tim-I am certainly glad your sticking around.. I think I am one of the very few on this forum who has not done treatment.  So...It will be you and me kid waiting out the new fancy drugs.  We can keep each other posted on trials and info as it comes across the press...and pop a NADH (discussed in an older post)every once in awhile to get enough energy to dance the night away...

Keep smiling...hope you feel a little better each and every day..



__________________

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
hrsetrdr


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mallani wrote:

Tim, Very happy to hear you will still be with us. Was your visual problem due to the Interferon induced optic nerve neuropathy? Hope that rapidly subsides. Fingers crossed for you continuing undet. If not you have time to wait for the interferon-free stuff. I would be anxious too, particularly as I do not have time on my side. Good luck buddy.

 Malcolm,   thank you so much my friend.    Yes, the interferon is the culprit for the auto-immmune type swelling of my right optic nerve.     It's been nine days since my last pegasys shot, my eye hasn't gotten better, but at least it hasn't gotten worse.   

 My best wishes & prayers for you to complete treatment and achieve SVR.   Tim

Cinnamon Girl wrote:

 

I`m really glad you`re staying around too, Tim, and I`m sure it will be beneficial for you to share your feelings as you try to come to terms with what`s happened.  It`s great that you`re feeling better from the sx already, this must be such a bittersweet time for you.

Keeping my fingers crossed that you remain UND, and if not there will be other opportunities down the road for you.

Take care and go easy on yourself as you recover.   All best, Jill xxx  

 Jill, thanks so much for your words of insight, encouragement and upbeat attitude- very priceless indeed, sincerely from the heart- Tim

JoAnneh wrote:

Tim , thanks for staying on formun! We all don't know what tomorrow will bring
Hope u get on new trail program soon
JoAnne

JoAnne,    Thanks for just being you, and rest assured that I'll be here to cheer you on to cross the triple tx finish line!
My best,
Tim
davesf wrote:

Tim,  with or without treatment you're still part of our team as we all take this journey together.  You've had a setback but you've given your liver a nice break from the virus.  Easily enough to justify the time wait for the new friendlier drugs coming down the pipeline.  Plus there's even a chance you may not need them (knock on wood). 

Best,  Dave

Dave,  this is so important to me. and the mere thought that I may have lost that (however erronous as it is in real life)is such a big part of the grief that has attacked my senses.   Intelectually I know that all is well, but the message seems to take time to soak in within the limbic system.      Thanks for helping point out to me the real parts of reality!

my sincere best wishes,

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

 

 
davesf


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Tim,  with or without treatment you're still part of our team as we all take this journey together.  You've had a setback but you've given your liver a nice break from the virus.  Easily enough to justify the time wait for the new friendlier drugs coming down the pipeline.  Plus there's even a chance you may not need them (knock on wood). 

Best,  Dave



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All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo
JoAnneh


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Tim , thanks for staying on formun! We all don't know what tomorrow will bring
Hope u get on new trail program soon
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!
Cinnamon Girl


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I`m really glad you`re staying around too, Tim, and I`m sure it will be beneficial for you to share your feelings as you try to come to terms with what`s happened.  It`s great that you`re feeling better from the sx already, this must be such a bittersweet time for you.

Keeping my fingers crossed that you remain UND, and if not there will be other opportunities down the road for you.

Take care and go easy on yourself as you recover.   All best, Jill xxx  



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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.

 

 
mallani


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Tim, Very happy to hear you will still be with us. Was your visual problem due to the Interferon induced optic nerve neuropathy? Hope that rapidly subsides. Fingers crossed for you continuing undet. If not you have time to wait for the interferon-free stuff. I would be anxious too, particularly as I do not have time on my side. Good luck buddy.



__________________

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
hrsetrdr


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news wrote:

I really admire your candor and honesty. It has to be a huge, life changing event, with all the stuff that comes with that. But you were wise enough to see the good side of this on day one. You can now begin to feel better. And having experienced treatment, now you won't be anxious when the next opportunity comes along. Those new drugs are not far away. And perhaps the coolest thing about this is that you got a long way into treatment using some ass kicking meds. You just may have put that virus to sleep. Wouldn't that be rosy? You betcha! Alan

I became obsessed and driven to throw off the Hep C, I'm not normally like that in life.   Now my challange will be to let go of that type of mentality , because there will be considerable waiting periods where intense focus will do little, except to cause my mental health to suffer.      However, I am willing to hold my breath a little longer, to see what the VL labs have to say. 

Shep wrote:

Tim--you are incredible!! So glad you are sticking around. Take it slow. Coming off these drugs is not as easy as one would hope for. But it does happen!

I completely understand the anxiety---the what comes next part is huge--but new meds are just around the corner. Keeping you in my thoughts!!

Thanks Shep, it's sentiments such as yours that make this forum such a meaningful, important and just all round safe place for a person to bring their thoughts, feelings and fears to be exposed to public scrutiny.

 



__________________

"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

 

 
Shep


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Tim--you are incredible!! So glad you are sticking around. Take it slow. Coming off these drugs is not as easy as one would hope for. But it does happen!

I completely understand the anxiety---the what comes next part is huge--but new meds are just around the corner. Keeping you in my thoughts!!

__________________

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!!!!
news


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I really admire your candor and honesty. It has to be a huge, life changing event, with all the stuff that comes with that. But you were wise enough to see the good side of this on day one. You can now begin to feel better. And having experienced treatment, now you won't be anxious when the next opportunity comes along. Those new drugs are not far away. And perhaps the coolest thing about this is that you got a long way into treatment using some ass kicking meds. You just may have put that virus to sleep. Wouldn't that be rosy? You betcha! 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!!
hrsetrdr


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After halting treatment  the On Treatment section of the forum will now no longer be of of my venues, at least for another 3 or 4 years.    

Admittedly, I didn't get here  to the Post Treatment section by the same means as most folks, but I still have a vital need to be here, to be connected with my friends & fellow dragon slayin' warriors.

smilenl.gif

I have been off medication completely since mid afternoon Aug. 8th(72 hours), as of the present, I have missed:

1. one Pegasys injectin

2. eight Victrelis doses

3. six Ribavirin does

The side effects that are lessoning are:

1. All skin problems are repidly disappearing...about 98% gone!  

2.Fatique -  better, but  still not ready tackle a new job.

3.Emotional- when I was on-treatment I never was 'depressed' per se, maybe a little manic though.   Now, I've been dealing with "acute "anxiety-extreme stress", which I think is partially due to withdrawal from the drug regimen(mainly Victrelis-?) and just plainly the normal disappointment of having your life's hopes & dreams dashed to pieces by one single little problem.     Xanex and the healing of time will make this emotional turmoil go away...of this I am certain.  waveye.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

 

 
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