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317787 tn?1473358451

SVR after tripple treat of Incivek

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 :)
32 Responses
5432782 tn?1368806956
Hi I don't really say much ,but I do look forward to reading all of the posts nightly. It's the post like Dee and pooh that remind me to keep my eye on the prize. Tonight is the start of week 6 for me , of peg Riba and Incivek , I feel like a bag of ...... , I go to my hepatolagest on thurs for my week 4 PCR test and you all know what I'm looking for. So keep these after TX post coming because they are an inspiration to all of us here.
Thanks you guys for all of the helpful information I use it daily
Mike
Avatar universal
Hey thanks for coming on bringing us up to speed. I am 2 months post EOT and undetected. I was undetected early on so hopefully I will also see SVR. Some of my lab results are still out of range, but seem to be moving in the "in range" direction so... Great that you're feeling better.  
4652753 tn?1364581946
Congratulations to you for sticking with it and getting the prize at the end.  Also thank you for posting for those of us who are continuing to treat.  While I still have 26 weeks left I know that I can reach the end and one day post those three letters SVR.  

It is also nice to hear that you are doing so well.  I get very nervous when I read from folks who have completed that they are not doing well way after completing tx.  I know that all folks are different but it really makes my heart happy to know there is the possibility of doing well after tx.

Thank you for sharing and now that I am going bald on top of my head and so thin everywhere else I can take a deep breath and know one day I will also have hair again :-)

Linda
317787 tn?1473358451
Please excuse my typos, I really do know how to spell.

Thank you for your responses, I just remember how I wanted so much to hear from others.  I hope this will help
317787 tn?1473358451
I should mention that I lost all the hair above my ears and the back of my head.  In hindsight a silk pillow case would have helped keep some of it from breaking off.  My hair completely dried out within two weeks of tx.  If I had known I would lose so much, I would have had it cut and donated it to Locks of Love. Mainly there is not much you can do to keep it if it is going to fall out.
Like NYGirl said, there is no magic pill, even though I searched. she was right.  Keep an eye on the thyroid as tx can affect that.  
Best wishes, Dee
Avatar universal
Thanks for posting. These are the posts that give all of us in treatment the inspiration and encouragement to keep fighting. I'm RVR but still have 14 weeks left and feeling it but your post keeps me looking forward to the day that I'm hopefully SVR along with gaining back my strength and some weight (doc said I was losing muscle mass and I said nothing from nothing equals nothing so where am I really losing from). This is tough but this post reminds us all of the possible reward! Thanks.
Avatar universal
Thanks for posting this, Dee.  It is very heartening to read that you made it to SVR with 24 weeks of treatment.  Drs are still recommending the same for my husband.  So glad you are feeling good and reclaiming your health!  Very encouraging.  thanks for thinking of everyone coming up behind.  Prayers for Hector.
1815939 tn?1377991799
I agree that our success stories help those who are treating to know that there is an end in sight and that things do get better.

Genotype 1; infected about 38 years ago; diagnosed July 2011; started Triple Med Tx with Interferon, Ribavirin, and Incivek Sept. 26, 2011; ended treatment Aug. 25, 2012. Starting VL 14.4 million; Week 4 VL DET; Weeks 8, 12, 16, 20, 24, 28, 32, 36, 48 VL all UND; 12 weeks post EOT VL UND.  25 weeks posts EOT VL UND. No dose reductions. 48 wks of treatment.  Attained SVR.

Pretreatment, I did have several extrahepatic manifestations:
*Systemic Vasculitis with Pericarditis, Pleuritis, & Hemolytic Anemia; Severe Fatigue in 1993-94;
*Gradually Increasing Blood Glucose;
*Unexplained Weight Gain;
*Sudden Onset Unexplained Allergies and Asthma;
*Dry Eyes;
*Dry Skin;
*Peripheral Neuropathy.
*Back pain (which was a real problem) and joint pain/aches.

Post treatment:
*Absolutely NO fatigue. I have tons of energy and pep and zip and motivation. I am going hiking in CO this year.
*Blood Glucose trending down. Blood Glucose lower than it has been for years. Perfectly normal.
*Weight decreasing.
*Allergies greatly improved.
*No problems with Asthma (have not used my inhaler since before treatment)
*Eyes are normal - no longer dry and no longer feel like there is sand in them. No longer need eye drops.
*Peripheral Neuropathy (feet) seems to be gone.
*Back pain is gone, totally gone.
*Dry skin is gone, but I do still have a few rash issues left from Tx.
*Joint aches and pains ... most of these are gone, but I do still have some knee and hip aches and pain, mainly when I go from sitting to standing. Walking is no problem.

Overall, I feel great, better than I have felt for 20 years. I feel like a new woman. Treatment was definitely worth it.  : )

Avatar universal
Wow - so great to read how well you are doing now!  Thanks for posting about your experience.
1815939 tn?1377991799
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.
1840891 tn?1431547793
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!
Avatar universal
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
317787 tn?1473358451
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
683664 tn?1330966324
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.
Avatar universal
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.
1815939 tn?1377991799
I had no medication reductions. I stayed with the full doses throughout Tx.
Avatar universal
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!
Avatar universal
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
317787 tn?1473358451
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
317787 tn?1473358451
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 :)
4973930 tn?1361789738
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
317787 tn?1473358451
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
4896357 tn?1360670904
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!! :)
4896357 tn?1360670904
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.
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