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Hep C Discussion Forum -> Post Treatment -> 2 1/2 years after tx
Post Info TOPIC: 2 1/2 years after tx
Labrat


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2 1/2 years after tx
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I'm currently 6 year and two months from my first negative or almost 6 years off the drugs.   I only did the pegylated & rib combo.   I have very cold fingers and toes the fingers are getting better but the toes go really cold numb achy especially at night waking me up every night after 5 or 6 hours of sleep they call  it raynaud syndrome.   The finger got worse each year now their getting better.    My muscles, tendons, joints everything achy.   The joints are so tender it hurts to walk. My liver was a 3 and irritated it still getting better my Dr just double check me and I'm still negative here some of my chart from the study~



-- Edited by Labrat on Saturday 7th of April 2012 09:38:01 PM

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Isiscat2011


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I sure hope not too, Alan.  You are such a great guy and deserve so much better; we all do. 

I think these are just risks that people should be aware of, especially before they dive in.  That doesn't mean everyone will experience them, and for many people the risk is worth it.  smile 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
news


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The discussion between isiscat, drivingon and others raises a scary but obvious question we will all face sooner or later. "In our role as Guinea pigs, what sorts of long term effects, other than SVR, can we expect?". I sure hope it isn't a long list of neurological disorders, even slight ones. Also I don't want joint and back pain, chronic dry skin, thin hair, weakness and tiredness, and so forth. And has anybody taken a look at what this poison is doing to my ailing liver? Today I feel pretty good, and am playing it to the fullest. Tomorrow I will give myself the 17th in a series of 36 weekly injections, which will be followed by major labs Monday AM. I am in this up to my neck. It feels too good to be bad. But I just pray for no big surprises later in life.

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!!
Cinnamon Girl


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Hi KAB, great to hear you`re doing so well!  It`s always good to hear a success story.  thumbsup.gif

I remember seeing you around the forum when I first started visiting, good to hear from you again.

Take care, hope that problem with your lips clears up.

All the best, Jill xx



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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.

 

 
KAB


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HI everyone

 

I completed  treatment  after Simon (approx 2 yrs and 3 months ago) , but we  were on treatment and on this forum  at the same time.

I too, am still negative and agree it is worth it!!!! One thing that I have post treatment is nagging chellitis on my lips ... my lips seem to be chronically chapped ..(in spite of a clean diet, lots of excercise  and being well hydrated)...My eneregy came back post treamtent and the brain started firing...no residual brain ffog.  Thankfully ..It is worth it.. Best of luck to all you on treatment ...



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Isiscat2011


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drivingon wrote:

having been through it, I would say pretty emphatically that my symptoms in those areas came directly from intereferon.

I  wasn't doubting this, drivingon.  My meaning was that many people will choose not to believe this and that the doctor who treated you with interferon is not likely to acknowledge it.  I expect we will all look back some day and say "Yup, interferon can and has caused some very nasty long term health problems." 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
LadyAlaise


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I am in week 12 of Treatment; Started Triple Therapy and ended Incivek at week 6. Going on with Riba & Pegasys Interferon.
I also suffered a car accident at 19 and broke my neck. (Got LUCKY).
I have suffered for years with "Tingling" "Numbness" and "Pain" and "Weakness" in my Extremeties, Esp. my arms, hands legs and feet; Before I started Treatment.
Now this very well could be due to damage to my neck (at least in terms of my arms and hands) but I was assured by a Nerve Specialist that my problems with my legs and feet are not from my neck injury.
The only damage I have had to my back is a Siadic Nerve pinch but that only effects my right side rarely.
I also experienced brain fog before Treatment as well in the past 5 years.
These symptoms have been slowly worsening since my 20's.
I have noticed and increase with numbness and tinglies since starting treatment. most of my toes on my left foot are 24/7 numb. Weakness was almost immediatly worse after starting treatment.

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Genotype 1A, Genotype (from parents) CC, Viral Load=7,514,000 (as of 12/6/11) Started Triple Therapy TX: 12/17/2011.UND @ 4-48 Wks Taken Off Incivek @ 6 wks due to Rash Response. Finished TX 11/17/12. SVR year 1
drivingon


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having been through it, I would say pretty emphatically that my symptoms in those areas came directly from intereferon.



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Isiscat2011


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drivingon wrote:
Isiscat2011 wrote:
The other side of the tx caused brain fog and nerve damage argument is that the hep c virus also causes these sx. 

 You lost me on that one.  no

(those empticons are funny!)

Permit me to rephrase. biggrin  Many people will argue that brain fog and nerve damage can be caused by the virus.  So, the argument will be (a) the patient already had these sx but they had not manifested yet, or (b) without the tx the patient would have gotten these symptoms anyway.



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
drivingon


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Isiscat2011 wrote:
The other side of the tx caused brain fog and nerve damage argument is that the hep c virus also causes these sx. 

 You lost me on that one.  no

(those empticons are funny!)



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Isiscat2011


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drivingon wrote:

Most gastroeneterologists have no idea of the scope and extent of side effects brought on by treatment.  They usually don't treat them.

Well, of course, they have a vested interest in not acknowledging treatment caused sx since they prescribed the tx.  yawn  This is not intended as a slam; it is just human nature and life in the real world.

The other side of the tx caused brain fog and nerve damage argument is that the hep c virus also causes these sx.  I guess for now it just depends on what we choose  to believe b/c the medical profession simply doesn't know these answers and you can find (result oriented) studies that support either theory.



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
drivingon


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Congratulations on SVR.  The tingling in hands and feet are probably from nerve damage caused by combo treatment. Interefron is  a neurotoxin.  It damages nerves.  Hence the brain fog, etc.

 

I treated with inteferon in 1992.  My toes went numb and I developed miild case of psoriatic arthritis in them.  Didn't put two and two together until I treated again in 2008 and my feet went numb and I developed choreic movements in my fingers. 

 

An anti-inflammatory diet might help. 

 

Most gastroeneterologists have no idea of the scope and extent of side effects brought on by treatment.  They usually don't treat them.



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alohaKim


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Thanks for updating us, Mr. Simon. Congrats to you! And yes, it's SOOOO encouraging to those of us doing battle right now.

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Genotype 1a, non responder to Peg/Riba in 2005. Started triple therapy 1-27-12 with Victrelis.  UNDETECTABLE as of 8wk labs (after 4 weeks of Victrelis) 4-3-12. UND at week 8, 12, 16 & 20 of tx. Completed triple therapy Oct 2012. relapsed 10/2012
Minerva


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Hi Mr Simon.  As everyone has said, great to hear from you and hear your encouraging words.  Always helpful for others considering, during tx.

Good luck getting the other issues sorted and best wishes.

Hugs

Heather xxx

 



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Finished TX 2005. Geno 3. Achieved SVR - Heather.

When You Are Up To Your Neck In It - Keep Your Chin Up!!

'Knowledge. Is knowing that a tomato is a fruit. Wisdom is not using it in a fruit salad'. My dad. X.
Cinnamon Girl


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Hi from me too Mr Simon,  that`s great, congrats! smile 

As the others have said, it gives real encouragement to other people on tx, or considering tx, to hear this sort of good news, thanks for stopping by!

Hope all goes well and you get some info soon about those other nagging probs.

Cheers, all the best, Jill xx



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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.

 

 
greenqueen


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Hi Mr Simon, good to hear from you smile

Thanks for popping in and sharing your good news - it's very encouraging to hear for those who are currently treating.

Hope you manage to sort out the other problems you're having.

Love Steff xx

 



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


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Hi Mr. Simon, Thanks for that encouraging update, It is great to have past posters back to relay the way they have been feeling. You are very lucky to have a good relationship with the Dr. Hope they figure out what is happening, perhaps the tingling is nerve related, like carpal tunnel.

Wishing you the best, 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)
mr simon


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Hello All,

Well it has been 2 1/2 years since I finished tx and I have maintained a great relationship with the Dr that I had for my tx. I was having a few post tx symptoms that just won"t go away so he felt I was feeling uneasy as to my status of being hcv negative and slipped in a test with my blood work. He graciously had the results enlarged and high lighted and handed them to me at my visit yesterday, still neg and as he stated, you are CURED,,relax lol.

He is a great guy and told me yesterday he has over 1300 "cured patients" under his belt with less than 2 percent not going neg, I gave him a big hug and a thank you from all of us.

Now if they can just figure out why I am still having some headaches and have developed tingling in my hands and feet I will be much better. He is truly feeling it is related to my neck and back injuries from the past, will be getting that checked out soon.

Just wanted to say "Hello" again and tell everyone, tx really is worth it!!



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