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Hep C Discussion Forum -> Post Treatment -> Relapse and severe body rash three months following treatment with Viekira Pak.
Post Info TOPIC: Relapse and severe body rash three months following treatment with Viekira Pak.
Gracie


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RE: Relapse and severe body rash three months following treatment with Viekira Pak.
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I think waiting between treatments or being tested for RAVs is the way to go. Time gets rid of some Ravs as they can hang on for awhile. There are so many new treatments on the horizon I expect RAV testing and matching treatments will be the future of treatment protocols. We are on the verge of the end of this virus. You'll get there... We all will!



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
Scott18927


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Hey Disappointed, I go to the VA too.  They ran out of money in June.  My next appointment is Nov 4th because they expect to have more money then.  Probably same reason you are not going back until 24th.  This has been the longest 5 months of my life because of the major symptoms and sickness I feel now. 

 

I am pushing for Harvoni.  Hope you get the same. 



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40 y/o M, GT 2A, Dx 2000.  Attempted 2 Tx with interferon and rib. Fibroscan F3; Tx 3 - SOT 1/26/16 Rib/Sov.  EOT 4/18/16.  AST/ALT 16/11.  VL = UND.  EOT + 4 tests will be 4/16/16
mallani


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Hi disappointed,

Here is a list of Abbreviations used on the Forum.

http://hepcfriends.activeboard.com/t51085702/forum-abbreviations/

RAVs are common after some of the DAA's.  How long they persist is still not certain. The AbbVie drugs are fairly weak in their action. Paritaprevir is prone to RAV's at the NS-3 site, particularly in Geno 1a's, where only one simple change in structure is needed to produce a RAV. The Geno 1b's need two complex changes in structure at this site.

Ombitasvir is like most of the current NS-5A blockers. RAV's develop quickly. The new Gilead Blocker will be more RAV resistant.

Dasabuvir is fairly hopeless. It is a NS-5B blocker, and I note is has been dropped from AbbVie's new drug, Technivie.

Sovaldi is a nucleoside NS-5B blocker. It is RAV resistant, and it appears that any RAVs that do appear, only survive for a short time.

Waiting for re-treatment is prudent to give any RAVs time to dissipate.

You should have a copy of your 'new kind of Ultrasound' - try to find it and we can tell you what it means. Cirrhosis is something we should all try to diagnose correctly, as it may affect treatment length and choice. Cheers.



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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
disappointed


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Mallani, I do not know what an RAV is or what an DAA is. Could you please explain? I was told I was not cirrotic after the tech did a new kind of ultrasound where he pushed a probe between my ribs by my liver. Thanks



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disappointed


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Hi BillS Thank you for the encouragement! Does anybody know why the VA would have me wait until November 23 for another appointment after telling me I had relapsed August 24th? My treatment ended May 26th and they said I had been clear of the viris for 8 weeks when my treatment ended. I waited five years to be vetted for Viekira Pak, with clean drug and alcohol screening etc.what new drug are they waiting for now?, why am I not put on Harvoni now?. I have a sneaky suspicion that they knew Viekira Pak was not that effective and they already had it purchased and had to use it on someone.



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Bills


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Ouch 

I'm so sorry Disappointed,  Just seeing this gives me the scary feeling in my stomach too. I've been off this site for over a month and see this as first post Just kills me. There are many of us who relapsed treatment 3 and 4 times. and the disappointment and feeling you may have has never left me. So I Identify with you completely. We did soldiered on. We are warriors fighting a very strong dragon. Geno 1 with cirrhosis as you know is very hard to kill.  I finally got Harvoni  I'm past SVR 12 and Hope I'll be saying SVR 24 soon. I'm  thinking you needed Harvoni, and may have some cirrhosis?  The insurance company's are as much of an enemy as the virus. May God have mercy on us. I'm hoping that you also got a false positive and as someone said  Detected is not an absolute. They should have retested the next day.  Again insurance seems to run our lives and fate. You have stumbled on a very good site here. lots of experience and lessons learned hopefully you'll be directed to a solution  that will get you to where you want to be. They are great here and if anything else. You'll find relief in sharing and listening you will learn somethings and how to sidestep some of traps, better I did. And I'll keep you in mind for that moment of silence before the serenity prayer.

BillS   

 

 
cirrosis


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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

coolheat


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Since finding out on Harvoni, my only 2 VL tests said "Dectected", I am ok with just waiting another month to have another test. I am feeling more better every day now. Don't feel like the hep c is back. Lucinda Porter told me that EOT "detected" are out there in large #'s; but the news down the line is people are actually coming up "undetected".  This is what Malcom and Tig and some others said when I got my EOT "Detected."  Lucinda confirmed it again.  I have been saying the serenity prayer more.  Even had a flu shot at the reg Dr. office.

Our own immune systems must pick the slaughter up after EOT in many cases. Death to Dragons. Wow, that feels pretty Barbaric, YES!  Penny, you're undetected!



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65 YO F, GT 1a1b, ast 14 alt 21, fibrosis 3/4 DX 1968 non a or b, TX 12 wks Harvoni, SOT 6.1.15, 1st bld wk: detected unquantifiable EOT 8.28.15 detected unquantifiable, 3 mo.EOT mid Nov.~SVR 12: ) UNDETECTED
Tig


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Takes every bit of 3 - 6 months to rid your body of that evil (but beneficial) drug Ribavirin. I had problems with anger, itching and sun sensitivity for a full year after I ended treatment. That garbage leased a Condo in our body and we all have to wait for the Sheriff to evict it for good! Hang in there and this too shall pass! It'll be a great day when they can eliminate that stuff from all protocols. 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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disappointed


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On a positive note I finished treatment May 26th and I believe all the Riba is out of my system. I feel like a normal human being again, aside from the rash which began about 8 weeks after the treatment ended. the emotions I experienced on the Riba were terrible.



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Tig


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Penny,

This is one of those times that Riba can really set you off. Might be better to turn off the Internet and concentrate on how much you have both achieved so far and will continue to achieve. This is nothing but information that has been out there and doesn't change your excellent chance to destroy the beast within. Your Dragon is dead and your husband's is writhing in pain, doing it's damnedest to get back at you. Don't give it a chance to hurt you anymore. Trust in yourself and your own knowledge that this is the end of it's control of your life! Don't let this rain on your parade, in my book and from my vantage point, the sun is shining upon you brightly!!

                                                                                                                                                   



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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disappointed


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Penny I am so sorry that I caused your "buzzkill", I have a feeling that my experience is not the norm. I was so thrilled and have been so careful with my lifestyle and diet and such, I was sure the 5-10%ers were just not caring for their bodies or had an advanced liver damage. I was so shocked that I have just now started talking about it, I mean just today on this post and I have known since May 26th.



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disappointed


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Mike thank you for the encouragement. The thought of a "false positive" never occured to me I will check on it.



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Penelope PePod


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Thanks, Tig, you're right.  Just between this and the FDA warning, I'm getting a wee bit freaked out. But regardless, I need to get a grip and find my positive place.  I'll be happy when all the riba's out of me and I stop getting so emotional at every little thing.  Sorry 'bout that.

P.



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65;  Dx 1997 1a; VL 1.1m; TX naïve; SOT 7/20/15; 12 wks viek/riba 1200mg

09/14/15 draw: Undetected 8 wks into tx

10/12/15 draw: Undetected at EOT

01/05/16 draw: Undetected at E0T+12
disappointed


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Tig, Thank you for the encouragement. I finished treatment May 26th and was "clear". August 24th blood draw they said I had relapsed and my next appointment is November 23rd.

Thank you for the shower advice, the rash gets really red all over after a shower (I shower daily). I have a friend with severe eczema and he really suffers, mine is worse and I sure hope it is not permanent but I have had it for a couple months now. I have never had any skin problems and few health problems before.



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Tig


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Hi Penny,

Your chance to achieve SVR hasn't been reduced at all. The rates of success have always been approximately 90-95% for all of the new DAA's, in some instances higher. The incidence of failure remains very low overall. Not to worry my dear! You got this! Remember that little thing we talked about? REMAINING POSITIVE is the right thing to do. Your chances (everyone's chances) have never been better.



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Penelope PePod


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Malcolm,

This is the first time I heard that "5-10% of Geno 1a patients will relapse after 12 weeks of Viekira Pak/Riba".  I just finished my 12er with EOT undetected.  What a buzzkill; I feel like I just got punched in the stomach.  No offense, Malcolm, you're just the messenger, but this is making me want to cry.

Penny



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65;  Dx 1997 1a; VL 1.1m; TX naïve; SOT 7/20/15; 12 wks viek/riba 1200mg

09/14/15 draw: Undetected 8 wks into tx

10/12/15 draw: Undetected at EOT

01/05/16 draw: Undetected at E0T+12
mallani


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Hi disappointed,

Sorry to hear your news. Unfortunately, 5-10% of Geno 1a patients will relapse after 12 weeks of Viekira Pak/Riba. Many of us old-timers relapsed many times, but soldiered on.

May I ask, how do you know you're not cirrhotic? Have you had a recent biopsy or Fibroscan?

You will have RAV's at one or more of the viral replication sites, so I'd wait a while before starting new treatment.

I'd try to get Harvoni or one of the new DAA's. You'll get there in the end.

Your rash is probably due to Riba. Athlete's foot cream is pretty useless, as it's antifungal. You need some mild hydrocortisone ( like 0.5% triamcinolone ointment). Don't scratch and follow Tig's advice. Cheers.



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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
wmlj1960


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 Like others, I also failed treatment and the news hit me hard. But I continued to take care of my body and put one foot in front of the other. This is not a death sentence, it is a set-back and there is a solution. This may be a false positive but if not, there are options available and more on the way. Yes results can be less than positive. There is no guaranteed cure. But there are many many who have failed treatment, then went on to achieve SVR on subsequent treatment. I'm really sorry to hear your bad news and I hope you can pick yourself up and keep strong. We are all in this together and many of us know how you feel. We made it through it and you will too. #1 Get an appointment to re-test. One foot in front of the other. Hang in there. You are not alone! smile



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Tig


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I'm also saddened by your news, sorry bud. I have to ask you though, did they repeat the test? After a full treatment like that, an undetected EOT viral load and then a subsequent positive at EOT +12, is unusual and they should've sent you over for a repeat to rule out a false positive. Do you have a copy of your results that you can share with us? I'd like to see what the report has to say. The reports of detected viral load tests at EOT and a follow up undetected at EOT +12 are being reported more and more often. At the very least, you should have a follow up VL now and certainly at EOT +24. Call and request that repeat viral load. 

There are some RAV's that can develop, they can determine if that has occurred by doing some additional testing. I don't know how willing the VA will be. They fight me all the time for just about everything, so you have to be insistent to the point of being rude. I hate that we have to fight so hard to get the care we were promised. If your rash is Ribavirin related, if your doctor/nurse gives you the okay, I suggest trying one of the OTC hydrocortisone creams versus athletes foot cream. If it's itching, I took Zyrtec and Benadryl, they helped immensely. A good quality moisturizer like Aveeno helped me a lot. Limit your exposure to the sun and showering every other day in less than hot water and a mild soap, like baby soap or Ivory may help you too. 

There are some very good protocols knocking on the door and should be released any time now. Gilead and Merck both have some very promising protocols in the final stages of testing now. While the thought of having to go through treatment again is never an entertaining thought, but it sounds like your liver is strong enough that time is still on your side. Reach deep and find that kernel of positivity remaining inside of you, grasp it and let it catch fire. You're going to beat this, I know it will happen. Stay in touch with us okay? We're here to help...



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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disappointed


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Thank you for the encouragement Groupgetter.



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disappointed


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Thanks for the encouragement Robert and for letting me vent.

 



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disappointed


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Thank you for the link Scott. So much money is at stake here that it is hard to get at the truth...the truth is Viekira Pak failed me and it was a very expensive fail.



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Groupergetter


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RE: Relapse and severe body rash three mreonths following treatment with Viekira Pak.
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Truly sorry to hear of your relapse.  We sometimes seem to be on a roller coaster.  So much good news and then the disappointment of relapse.  Many on the forum have at least some understanding of how you're feeling.  I had high hopes of the Sovaldi and Olysio working only to fail.  Things will work out,  You'll find SVR.  Stay strong and keep the hope. 



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
disappointed


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I am normally a very happy, positive man, certainly not a complainer. I am very careful with my health and was so thrilled to get the treatment with Viekira Pak and be finally free of this disease and the stigma. I waited a long time and was virtually guaranteed a cure. No one suggested the outcome would be less than positive. To anyone reading this THE RESULTS CAN BE MUCH LESS THAN POSITIVE WITH VIEKIRA PAK, they can be devastating. Expectations can cause resentments. Viekira Pak was not a cure for me.



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disappointed


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funny they are so busy selling this stuff but after a relapse they give you athletes foot cream to deal with the rash afterwards.



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robertsamx


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Really very sorry to hear about your relapse. Dont give up, there are several new DAA"s in the pipeline now that are just about ready to get the FDA approval. Two from Gilead are gs-5816 and gs-9857, and a couple from other drug companys.  As you know 1a"s are a little harder to cure.  Its hard news to get I have been there, but now 18 months later i am one week into a re-treatment and hopeing for svr.  Stay tough.  Your re-treatment will come. RC



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Scott18927


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Sorry to hear about your relapse. I have not learned enough yet to give you any suggestions, I am still learning about my own symptoms and stuff, but you should read this. I just stumbled upon it on the internet. Looks like this was released today.

www.fda.gov/Drugs/DrugSafety/ucm468634.htm

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40 y/o M, GT 2A, Dx 2000.  Attempted 2 Tx with interferon and rib. Fibroscan F3; Tx 3 - SOT 1/26/16 Rib/Sov.  EOT 4/18/16.  AST/ALT 16/11.  VL = UND.  EOT + 4 tests will be 4/16/16
disappointed


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The rash looks just like pictures of ECZIMA and I am concerned if it will be permanent- I have already what appears to be scarring of the skin which looks like stretchmarks, my VA primary care nurse prescribed Atheletes Foot cream for me to put on affected areas but it hasn't helped much.


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disappointed


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So I had a three month follow up blood test after being pronounced free of the viris after completing the twelve week treatment with ribavirin and the shocking news is the viris has returned. I am a non-drinker, non-smoker, non drug user, very healthy eater, and celebate. To say the least I am very disappointed. Further I am plagued with a terrible itchy red body rash. The VA said I should wait for another drug (I waited five years for Viekira Pak) because to use the drugs presently on the market may make the viris drug resistant. Any suggestions on how to proceed now from the readers? I am on no other meds, I am 66 years old, no liver cirrosis, Hep C type 1a.



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