Author Topic: relapsed after harvoni.startin viekira with riba this week (Read 12553 times)

guitarplayer86 · « **on:** November 17, 2015, 12:22:36 am »

Hey guys I'm matt I'm 29 I found out I had hepc last yearn was blessed to have these drugs all be approved compared to some of you who have went along time. I was aaccepted quickly for assistance n done harvoni but six months later my vl has went back to 330,000 it went from 1.6 to Ud on harvoni. But I'm starting viekira with ribs Thursday and feel blessed to have another option I'm just nervous hope it works and worried about side affects cuz had none with harvoni I plan to post throughout cuz I have no one to talk to in my life about this. God bless you all and hope we all are cured from this!

Philadelphia · « **Reply #1 on:** November 17, 2015, 12:40:44 am »

All the very best Matt. I've done the VP+riba combo - 24 weeks. Post away, we are all here for each other. There is a lot of wisdom in the forum and people have often been down the same path. In fact I saw a post from another Harvoni relapse person who was starting VP only a couple of days ago. It's always useful to talk with people who know what you are going through.

guitarplayer86 · « **Reply #2 on:** November 17, 2015, 01:19:54 am »

I agree it helps a lot and I look forward to it cuz I don't have one person to really talk to about it

Philadelphia · « **Reply #3 on:** November 17, 2015, 01:50:54 am »

I blogged my entire treatment in (mind-numbing) detail - the link is below in my dig using the name Grace Campbell. Feel free to dip in and out of it - it goes back to March.

KimInTheForest · « **Reply #4 on:** November 17, 2015, 08:41:17 am »

Good luck to you Matt on your new treatment of Viekira+Riba. I finished 12 weeks of Harvoni+Riba in July. Yes, the riba can be rough. I got anemic from the riba. But it was all manageable. Stay well hydrated while on treatment. Plain old water is best. It does help with side effects. I look forward to reading about your progress!

best,
kim

dragonslayer · « **Reply #5 on:** November 17, 2015, 08:49:12 am »

Quote from: guitarplayer86 on November 17, 2015, 12:22:36 am

Hey guys I'm matt I'm 29 I found out I had hepc last yearn was blessed to have these drugs all be approved compared to some of you who have went along time. I was aaccepted quickly for assistance n done harvoni but six months later my vl has went back to 330,000 it went from 1.6 to Ud on harvoni. But I'm starting viekira with ribs Thursday and feel blessed to have another option I'm just nervous hope it works and worried about side affects cuz had none with harvoni I plan to post throughout cuz I have no one to talk to in my life about this. God bless you all and hope we all are cured from this!

Guitar, so sorry about the relapse, but glad you have an option. Can you give us some more facts about the relapse? Ie, Viral load prior to treatment, length of Harvoni treatment, degree of fibrosis, and any viral loads taken between end of treatment and the bloodwork that showed the relapse? And, was the relapse discovered 6 months from the beginning or from the end of treatment?

Thanks much, and best of luck to you!

guitarplayer86 · « **Reply #6 on:** November 17, 2015, 10:52:14 am »

Yes, well I've had the scan I don't know the score but I know I have no cirrhosis or anything but last July I found out I had the virus my vl was 334,000 in three months something mad it jump to 1.6 mill then I got the harvoni and at end of treatment I was ud. For some reason instead of three months my post labs were for six months post and my vl was back up to 330,000 which is where I am now starting viekira this week. Basically I'm back where I was last July when Ifound out iI had the virus. But I'm very confident this treatment will work. Thanks guys, matt

etgal · « **Reply #7 on:** November 17, 2015, 11:36:19 am »

Hello, Matt I am starting tx this week.... 12 weeks of Solvadi + riba. I am sorry your last tx failed, but we will succeed this time

KimInTheForest · « **Reply #8 on:** November 17, 2015, 12:20:16 pm »

Quote from: etgal on November 17, 2015, 11:36:19 am

Hello, Matt I am starting tx this week.... 12 weeks of Solvadi + riba. I am sorry your last tx failed, but we will succeed this time

Welcome to the forums, etgal. And good luck to you too!

kim

Cal · « **Reply #9 on:** November 17, 2015, 03:52:54 pm »

Hi Guitar,
I'm on 16 weeks Viekira and just finished 12 weeks of RIBA. It can get hard on the Ribas at times. Stay hydrated and tell your Doctor about side effects, because they can prescribe things to help you. Eg. Sleepers etc. wash only in a soap free wash as Ribas give you dry skin and moisturise with Aveeno a all over.

Sorry about your relapse, there's another forumer who just started Viekira after a relapse on I think a Harvoni. I'll try to find them.

Good luck, I have relapsed too before as have many on the forum, so it's a revolting feeling. So sorry it happened to you. Cal

guitarplayer86 · « **Reply #10 on:** November 17, 2015, 04:03:20 pm »

Thanks for the support guys I'm so anxious for Thursday I get the meds tommorow but starting Thursday morning. What are the side effects you guys have had from the riba?

guitarplayer86 · « **Reply #11 on:** November 17, 2015, 05:01:06 pm »

Ugh just got a blow below the belt. Express scripts just called and said they've called my doctors office three times trying to confirm my prescription because they only do generic ribavirin so they have to cancel tomorrow's shipment. I HATE MY dcs office u can never get them on the phone hopefully after I go in morning I can still get the meds before weekend. Its only a couple day delay but still a small kick to that good bag. Sigh'.

Cal · « **Reply #12 on:** November 17, 2015, 10:18:40 pm »

Guitar,
If there's one thing we get really good at on tx and with HCV it's waiting and having disappointments.
You'll start tx don't worry. Cal

jakas · « **Reply #13 on:** November 18, 2015, 06:55:58 am »

@guitarplayer86 how long were you on Harvoni tx ?

BillT · « **Reply #14 on:** November 18, 2015, 07:16:52 am »

Hi Guitar,
I'm sorry the Harvoni didn't work but welcome to the Viekirian side.I hate it when you want to get started but have to wait but at least it's a minor setback.The riba's are effecting everyone differently and there's a lot of posts here about the sx's.I'll let someone that's taking them help you with that info.In the meantime I'm going to go hide the knives(and Cali's tongue)again.

etgal · « **Reply #15 on:** November 18, 2015, 08:07:47 am »

Oh man, I know this is maddening since you were geared to start. I'll be just ahead to light the way. It may sound trite, but I do believe there is a larger reason things happen, so hold.on to that thought.

guitarplayer86 · « **Reply #16 on:** November 18, 2015, 11:38:04 am »

I was on the harvoni 12 weeks which is why I was dumfounded it came back but I talked to express scripts today I should have meds by weekend thank god

jakas · « **Reply #17 on:** November 18, 2015, 04:10:33 pm »

YES VERY VERY scary for me as I gonna start treatment in a few weeks

Cal · « **Reply #18 on:** November 18, 2015, 04:47:23 pm »

Guitar,
Can you fill in your profile signature, then we won't ask you the same questions over and over again.
So glad you are getting the Viekira by weekend. You'll feel a lot better when you start the journey. It's that damn waiting that gets to you.
Cal

BillT · « **Reply #19 on:** November 18, 2015, 05:00:42 pm »

Hi Jakas,
Try not to worry.Some people have had a hard time but it seems the majority of us have handled this well.The meds are effecting everyone differently so you won't know until you start what's going to happen and everyone here will give you any support we can.That's what this site is for.Post your stats in your profile so we don't keep asking the same thing.It also gives us a better idea where you're beginning from.You're going to make it like the rest of us so just try to relax and not worry until there's something to worry about.

Madelief · « **Reply #20 on:** November 19, 2015, 06:02:49 pm »

This is new for me...I thought that when the virus was undetectable that is was really gone. But it can happen that it was undetectable that after some time it comes back?
Oeffff , that must be very very hard , disappointment is a understatement then.
Wish you good luck with the new treatment!!
Madelief

guitarplayer86 · « **Reply #21 on:** November 19, 2015, 06:17:03 pm »

Wel they say that if you're ud at 3 months that's like the majic line I was ud at my final week of harvoni but for whatever reason my. Post labs were scheduled gor six months post. Mine most likely came back before that three month mark. Got call f2f oday ill have my meds on thanksgiving day. Hits the spot cuz God knows I couldn't be more thankful.

Murray · « **Reply #22 on:** January 13, 2016, 02:49:46 am »

Hello folks,

I'm another Harvoni victim. I did the 12 week tx. Side-effects were horrendous. Very sick. And I got the final Harvoni gift today. Relapse 2 weeks after tx completion. I was ud at week four of tx. And didn't test again until 2 week post tx. I've got new insurance and have to change doctors so I'll have to wait and see what can be done. But after the Harvoni sx not really interested in more tx. I was diagnosed in 1990 but have had it since mid 70's. I've never been sick from it in 40 years, well except for the 12 weeks of Har D voni. I know most of you didn't have sx and I'm thrilled for you, and please don't tell me how much harder interferon was. I refused interferon for 30 years and was continually told I'd be dead in 10 years, well I'm still here. Just wish I never did Harvoni. I'm 8 weeks off and still have a lot of digestive issues and occasional severe diarrhea. The only positive thing I got out of tx was I lost 15lbs. WoooHooo!!

HazelAustralia · « **Reply #23 on:** January 13, 2016, 05:01:14 am »

Sorry to hear that Murray, it must be devastating.
I hope the after effects die down soon.

Hazel

jakas · « **Reply #24 on:** January 13, 2016, 05:24:40 am »

Yes sorry to hear that, I am on Harvoni too and does give me the fear of a relapse.

FutureThinker · « **Reply #25 on:** January 13, 2016, 12:19:31 pm »

Murray, not happy to hear about your relapse. Unfortunately, none of the current drugs is 100% effective. I've been fighting to get on Harvoni since last year, so I've had a while to be able to dig thru all the research available online these days. I believe there will be a much more tailored approach to this disease in the near future. We're just not there yet, and the current philosophy is to treat first, then look at what happened if SVR isn't sustained. It's a little unnerving, but until more research is available, this is where we're at.

Most people do respond to today's treatments, but there is a small percentage who don't. If you take a look at clinicaltrials.gov, there are now several for those who have relapsed.These are very new drugs and we're still in the learning curve. But we have a lot more safe & tolerable options than ever before, and that's a good thing! Just hang in there and I'm so happy to hear you've been able to get approval for a second round! This forum will help you get thru this. Take care, FT

Murray · « **Reply #26 on:** January 13, 2016, 03:39:49 pm »

Thanks all for the kind words. Still waiting for Dragonslayer to tell me I'm lucky I didn't do Interferon and try to stop me from saying anything negative about the wonder drug Harvoni.

Further Thinker I didn't get approval for a second course nor do I think I'd do it anyway. Still waiting to get set up with a new liver doc as my insurance has changed.

FutureThinker · « **Reply #27 on:** January 13, 2016, 04:47:40 pm »

Sorry Murray, got you mixed up with guitarplayer! I am sorry that the Harvoni was so hard, just goes to show that each of us is an INDIVIDUAL and not a robot. Thus why most respond to the Harvoni, but not all. I, too, have put off treatment w/ peg/riba until the DAAs came out, but I am ready to get on with my life and stop being tired all the time. So tired of being tired!! I think I'm going into this potential treatment if the IMR goes thru with very open eyes, thanks to folks like you who post their experiences. FT

Forums Index

Welcome

Author Topic: relapsed after harvoni.startin viekira with riba this week (Read 12553 times)