SVR after tripple treat of Incivek

[Dee1956]

Hello, one thing that I was desperate for during tx was for people to come back and tell us how they were doing.
I started out with HCV, Cryogloinema, Cirrhosis, Diabetes, low Thyroid.  My doctor said that in my case it would be very hard to treat.  He then said he was only having me do 24 weeks, since I was a previous relapser.  He said he would not subject my liver to the additional 24 weeks that "may help" me get to SVR.  He has been involved in trials and Studies at Translational Inst at INOVA Fairfax VA Hospital with Dr Younnissi
I did the tx, it was awful as people can probably see in my journals or in my posts here and there :)
I did get to UND within the first 4 weeks, then UND at 24 weeks, 3 months later, 6 months later same
Now I am almost 16 months post tx.  I recently had blood work, I am SVR and my doctor said they are now considering this a cure.  He also said they are finding that while the liver regenerates it is also regenerating the scarred tissue.  I feel better than I have in years. My mind is clear, my hair is growing back, my muscles are building back up.  I am very happy that I took the chance

JimJim530 came back and said he went from a 3-4 and now is normal, that is great news and I hope encouraging to others on tx.

I hope that others will comment on how they are doing post tx to encourage those behind us, just like we were encouraged by those who went before.
I try to pay is forward.  

MedHelp, thank you for this wonderful site where so many fantastic loveing, supportive people have all come together to help each other.  I could not have gotten through the tx without everyone here

Please say a prayer for HectorSF, he is my hero.

Thank you all so much for your encouragement, support, advice, tips, etc.  I wish I had bought some stock in Walmart before starting tx, we were there every day or two :)

[crossroadsec]

Dee, you are the sweetest thing. And you sound awesome!
It's good to touch base with the old gang. We're a tough bunch, aren't we?
I go back to transplant doc next month. Another banding. Geez. Cirrhosis *****, but at least I'm virus FREE!
Working out and doing very slow 5Ks. haha.
My love to all, I think of you all every single day. I would never have made it without you.
xoxoxoxxo Karen:)

[Dee1956]

I am so sorry, some day you will come on here and tell us all that you are SVR
That is what gives all of those fighting in the trenches hope, the thought that there are those up ahead doing well..living their lives...happy.

That is why I started this, to give other hope.

My best to you
Dee

[bluebird305]

I was told I had hcv in 1983.  I was told  notjing to worry about  your going to live a long life.  How stupid they were  in those dayl  also was diagnose with cirrhosis  which now is severe.  I was told last year that I shouldstart interferon but I was scared of the sides.  You guys give me hope!  thanks  bluebird305

[Dee1956]

So nice of you to post, thank you.  I hear you!  I wish I had known I had hcv before 2007, perhaps I would not have gotten to cirrhosis
I did test positive before an operation in 2004 but no one ever looked at my blood work.
96 was tested, it came back neg (was false neg) I have a lot of "if only's" in my life.
I walked around for years with the "smug" knowledge that I did not have HCV, hah

I am really glad to hear that you are SVR.  It was a very long hard battle but you did it!
So happy for you
Dee

[can-do-man]

Found out I had Hep C in 2003, didn't much worry about it as I felt great. Big mistake on my part. Biopsy in early 2005 found me cirrhotic, treated for 86 weeks only to relapse by 4 weeks post. Hepa got me into the last Vic. (Boceprevir) trial. Treated another 48 weeks and now SVR. While I am not as "active" as I once was I am also 10 years older.

Besides that I am doing fine, would I do it again? Yes in a minute, would I have loved to treat before I become cirrhotic? Sure as life would be a whole lot easier but it is what it is.......... Good luck people.

Good thread Dee, best to you always......

Candy man

[Dee1956]

Thank you so much for adding your story.  I was hoping to encourage others who are treating or thinking of treating
I am happy for the first since treating and I guess I want to pay it forward or share.
Thank you for all of your hard work on the charts for all of us
Dee

[Dee1956]

Thank you, I am praying for you. I know how hard the tx is.  Frijole has a really neat chart on her home page you can see all the people who treated with what and how they are doing.
My best to you
Dee

[frijole]

great post, gang.  I have also reached SVR after two treatments, the first with Ribavirin and Interferon and the second with those two drugs plus Victrelis.  I treated 48 weeks because I had developed cirrhosis.  It has been about 11 months since I finished treatment and I do feel well.  My only problem is post-tx weight gain (happened the first time too) which I have not been able to get under control.

With a lot of help from friends on this forum, I have kept record of the success and failure of triple therapy.  If you go to my home (click on my name or picture) and go to my photos, I have about 6 sheets which document members treatment .  Please check it out, if you haven't already.  And if you want the actual excel spreadsheet just send me a pm

frijole (bean)

[Carlhcv]

Dee, thank you for mentioning Hector. What a wonderful person to still be here helping people when his own situation is not so good. Hector deserves better.

[Carlhcv]

Great news! Thanks for sharing. I'm on week 20 of triple w/Victrelis. I'm a man and I'm losing my hair and what's left is turning white. I was barely detectable at week 8 (VL 9) so am probably in this for 48 weeks. In fact I want to do 48 weeks to maximize my chances of SVR. Big test coming up for me at 24 weeks when I MUST be und. Then I will be over the hump! Yay! Congratulations. I'm very happy for you and maybe I can post good news like that in a year or so!! :)

[Dee1956]

Hello thank you so much.
I am so sorry to hear you had to have your teeth pulled.  I worry about same for me in the future and can imagine it was a hard decision.
When my platelets fell to 65K and I realized what it was...HCV.  I tried very hard not to ingest anything that could thin the blood ore reduce platelets further.
My doctor told me that ibuprofen paralyzed platelets for 3 days while aspirin does it for a week.  Not saying you are taking either, it is just there are things that can affect the platelet.
All my best to you

[jpv1]

Nice to see all these updates. Dee and Pooh your inserational to a lot of people  here and hope Hector is doing better. I just got my blood work done and looks like my Plates have fallen even further down to 60 now 18 months ago they were 255. I had all my teeth pulled which was advised by the doctors here in Australia. They werent that bad but I could not afford the dental cost (thousands of dollars for bridges and implants) so I had to make this decesion. Now Im ready to start treatments in next 5 weeks they are starting triple treatments. I look to the challange many of you have faced and beat. Your words of encouragement mean everything to me. Living in Australia is like a third world country ( Im American) health care may be free but its a long time comming. I was told I had Hep C 2.5 yrs ago and stage 2 cirrhosis which has moved to the stage 4 cat now. I have 3 beautiful children and 3 grand children that I want so much to see and be close to. I hope to move back after my treatments and spend the rest of my life with them in Ohio (columbus). I am happy to add anyone here and help any of you all I can. God bless and keep us all in his hands as we go through this part of our lives. Cheers John

[Dee1956]

Hello I read each on of your posts and they brought tears to my eyes.  I know how hard the tx is.  Any of them are hard.  It is also very isolating because no one else knows what you are going through.
The worst for me were the mental side effects.  I thought I was losing my mind, thank God my husband convinced me I was not and that I would get through this.  Thank God for all the care takers out there who walk with us through this hell.  Sorry ...I get a little corny at times :)

[Dee1956]

Your words really spoke volumes to me
You are right, it was hell, at one point Gerbils and I were saying we were pioneers, our doctors had never treated anyone with Incivek and it was a nightmare.  One I am very happy to forget..well except on here to share with others :)  My hope is that everyone will share their story....give hope to those still in the trenches fighting the war
My best to you
D

[bbj2856]

This is wonderful  DEE. So glad for you . I got back Monday June 17 for my blood work I finished EOT  in  June 2012 and was UND went back in Dec 2012 was Und so I understand that is SVR . I am praying this blood work on Monday is still  a SVR . It is so good to hear when others have a good out come and  reach SVR. God Bless all of you and  lets keep praying for everyone who is still fighting to get there . Less keep in contact and help everyone we can with support and lots of love.
bbj

[shocked60]

Yes I had to stop Incivek 3 weeks early and my Riba was cut back because of severe rash. I was svr @ 24 weeks. I am now 3 months post tx and feeling good. Hair has started to grow back and skin is starting to be normal after the inclusive dermabrasion that comes with tx, Thank God for the foggy brain that let me forget the sore joints the swollen face, arms and legs and the relentless itching. If there is a Hell, we went there. But it was all worth it and I would do it again if I do not get the SVR in 3 months. My side effects may not have scared me so if I had come to this site more often to see others survive the same. Hang in there. All my best to all of you in the middle of tx. This will pass and be just a memory and you will have gained more compassion for others. All my best!

[pooh55811]

I had no medication reductions. I stayed with the full doses throughout Tx.

[nzkiwilife]

Thank you all of you for posting your results.
It really does give those of us still treating a boost while we persevere with our sx and look forward to our last day.

Can I ask if anyone that has now completed tx whether they stuck to the protocol or had to reduce the meds and if so, whether they still achieved svr?

I love the support and knowledge of this forum. Its like we are fighting our own private war from the rest of the world due to no one knowing what its like to go through this unless you are doing it yourself or are supporting someone that is going through it.
Goodness Ceanothus you are one tough cookie. Well done!!! Your perseverence paid off.

[lapis]

Some of you will remember me, I was in a clinical trial for Incivek (Telaprevir at the time).  I was diagnosed in 1996 and did not treat till 2008 because I was concerned about the psychiatric side effects of interferon, and because the chance of cure then was only about 30-40% after a year of tx.  So I waited, and worried about my health.  I had already been diagnosed with hypothyroidism many years before but other than my liver disease, my health was very good.  I had some vague GI issues, sometimes heartburn, irritable-bowel symptoms, morning nausea, and severe muscle spasms at times, but overall I felt well.

I was in a group that only got the study drug, telaprevir, for the first 8 wks, and I completed tx at wk 24.  At my 3-yr hepatology visit, I was told that they did not need to see me anymore, every VL had been UND, and I am no longer a liver patient.

My biopsy before tx was G1, S1-2 (it had been G2 S2 the year before).  I felt so fortunate to have been able to complete tx in 24 wks, and it is good to think that my liver damage is regressing.

It was a year before I really felt like myself again. I slowly lost some weight after tx (without really trying, had been overweight for years).  My cholesterol, which had always been around 176, became elevated after tx but still did not go above 200.  Sometimes I get odd rashes, which I did not get before tx, but they are manageable.  I no longer get the painful and long-lasting muscle spasms I used to get.  Everything else has returned to normal or better than before.

For those in tx or waiting for the SVR report, hang in there!  It is worth it.  Tx was difficult, the anemia was the worst side for me, and the GI side effects were horrible, but it was worth it for me, to be rid of Hep C.

[Dee1956]

WOW!  You guys are the best!  Pooh, Cean, thank you so much for sharing your experience it helps those behind us to hear,  it gave me hope to hear of those ahead in the journey.  Gerbils was a couple of months ahead of me and she really gave me hope that I would improve.

Cean, you will get there, everyone percolates a little differently.  You are so right, I meant to type triple threat, no way was that a treat.  Other than making me realize I am stronger than I ever thought, it was not treat.  If my husband had an account he would triple that one :)
The charlie horse cramps that brought me to my knees while walking scared him a lot.  The mouth sores, th boil ugh. being half bald, not fun
And those are just the highlights ha ha

I do have to say that every day does get better, what helps me is to look back to where I was a year ago.  A year ago I was obsessing about my hair loss, did not have any and it was still falling. I was worried about my platelets.  I could not see the forest for the trees.  I don't want to say it took me a year but it did.  My mind is so clear it scares my husband ha ha, cause now he can't blame my memory  for things he never told me.  

To everyone who posted, you help me too.  You help me remember where I was, how far I have come and I remember the people up ahead of me on this journey who reach back and lent a hand.  I will always be grateful.  I could not have done it without this community.

Keep your eye on the prize.  When you get down, tell yourself it is the medication.  I thought I would be able to do that but I could not remember from day to day.  I finally wrote it every where "It is the medication"

Of course you want to get help for your side effects there is no reason to suffer if there is something  that will help you
All my best, Dee

[cheflady]

You made our day Dee its great to hear and gives us all such a lift. My hubby 8wk post tx with Teleprevir so we wont know for a while if he SVR he to did 24wk and was UND from wk4 so you given us much needed hope! Thanx for sharing i to think Hector a hero and you are to Much love Jules xx ps Big hug coming all the way from England!! xxx

[ceanothus]

Triple treat? That is an ironic typo! Dee and Pooh, you two are great, and I'm so happy for you. I'm happy for myself too, although I'm a little disappointed that I'm not YET doing as great s either of you – but I'm emphasizing the yet. I am SVR, and that is what is most important. I was diagnosed in 1986 (with non-A/non-B initially), treated in 1994 and failed, developed cirrhosis by 2005, treated again in 2005-2006 (72 weeks of interferon and ribavirin) and relapsed, then finally did 48 weeks of triple tx with Incivek, finishing in September of 2012 and finally achieved SVR. I'm about 9 months post-EOT and I'm not yet back to feeling great, but I AM still getting slowly better. I will catch up with Pooh and Dee one of these days! You guys who are still struggling with tx, take heart. Most people do achieve SVR on it, and most people start feeling a lot better, its just that we all need different amounts of time to do it. Hang in there, the SVR is worth it!

[pooh55811]

Correction:

The part about the extrahepatic manifestations should read:

*Systemic Vasculitis with Pericarditis, Pleuritis, & Hemolytic Anemia 1993-94;
*Severe Fatigue

The systemic vasculitis was in 1993-94. The severe fatigue came later, progressing slowly, but by 2007 or so it was severe and stayed that way until after Tx.