Looking for Harvoni relapsers

[GP7852]

As a Harvoni relapser I am waiting on a trial that my own doctor will be conducting from Merck.I do not know the drugs that will be involved.I would love to hear if there is anyone who relapsed on Harvoni and is being treated or has already been treated to find out which drugs were used and how you are doing.The docs office just tells me November or December and nothing else.I really need them to call.I stay hydrated but the leg cramps are so very painful.
                                                                    Glen

[GP7852]

HI Dee-Is that one of the trials that you are mentioning?My doc said that I would be taking 3 different drugs for his Merck trial. Glen

[Dee1956]

Does this sound familiar?

100mg. of grazoprevir,  50 mg. of elbasvir combined in one tablet

[Dee1956]

You guys I am so sorry for the relapse.  I relapsed once, had no idea there were others out there like me until I joined here.
It is an awful feeling as if you have failed a test or you didn't try hard enough.
I was finally cleared on Incivek, horrible drug. Much worse than the first tx but it did do the job
I am talking to someone who just finished a trial with Merck I will try to find the name. I hear that it has a 99% SVR rate
Take Care
Dee

[Dee1956]

Not you it is the new format, new and exciting changes coming! LOL

[susan400]

Glen, I sent you a private message on this, but now, I'll post publicly, since I didn't hear from you on the PM.  I may be doing the same trial with the Merck.  I've been contacted by one of my former trial sites and they've reviewed my records and want me to screen sometime in Dec. before Christmas. I am like you in that I have done 12-13 treatments (I've lost count). Double dosing on Infergen, Double dosing on Peg, Double Dosing Infergen and then, high dose of Riba with it.  These different doctors were trying different ideas and I was never clearing, until last summer, finally, I thought I had beat this, got my first ever undetected with Peg/Riba/Sovaldi. I was undetected by week 4, and we und. on week 8 and then, took the week 12 blood work at 1 wk after treatment-still und.  Then, went back for my 12 wk post, relapsed. They redrew it and did another viral load 24 wks post, just to see if by some miracle it was wrong, and I was actually, clear, not the case, relapsed.  I chose not to go the Harvoni route because of the 'fighting the insurance/cost' factor.  Between my insurance and the Pat Assist Net., with the Peg/Rib/Sov.., $125,000 was laid out, and then, the insurance company, was like, 'No, were not approving Harvoni because I you don't have enough damage and basically, not cost effective, blah, blah. Also, my doctor didn't see any need to rush out and put me on the Harvoni.  I won't even consider getting it from India- because even that cost with it being cheaper, is still too high of out of pocket for me. But, I've heard good things about this Merck trial. Supposedly, it's open label, no placebo.  But, like you, it's really hard for me to feel positive.  I want to be, but I've been crushed 13 times with not clearing. I think I have a lot of resistance probably and a hardy strain. I used to have 1A AND 1B, but somewhere along the line with all the treatments, I cleared the 1B and was left with 1A.  But, Merck drug is supposed to cover Pan-genotype, 1A, 1B, 2, 3, etc.  Now, if I can just pass the screening process.  I wish both of us, luck and prayers in this trial.  Susan400  ( I don't know why this is set for double spacing because I didn't hit return or anything? Did Medhelp change something?)  How do I fix it to single line space?)

[susan400]

Now, I really have brain fog..,, when, I typed it, it was coming up with double line spacing and now, when, it posted, it posted with single line spacing.  Strange...

[GP7852]

Hi Susan-I havnt been on here in a few but I am glad I got to read your comments.It seems we are very much in common.I am wondering if this Merck trial that is being offered in many places is going to happen at the same time for everybody that is offering it.I have taken various blood tests to determine what strain I have and why its such a difficult strain to heal.I laughed when you brought up all the different combos you were on because it jarred my memory into remembering them all.That incivek with the ribo and peg almost did me in.Lots of really bad memories from the meds over the years.Like I said the doc told me that this trial is 100% that I am going to clear and stay clear for good.Its nice to hear but I have been beaten and battered so many times I must take it with a grain of salt.It just seems like when these new meds show up my dragon finds this secret bomb shelter inside me to hide out in for awhile and when those evil meds stop coming he comes back out.I just cant kill him,he is a part of me like another organ in my body.Please keep me informed on your trial as I am wondering if we will be starting it the same time.Good Luck and God Bless-Glen

[GP7852]

Susan-I also wanted to say I am not aware of where the PM is located-I am not very computer savvy-sorry,Glen

[hepcandme]

Yes, you are indeed one of the troopers!

I just don't know why some people relapse but I am rooting for you to get the Next Big Thing that will eliminate your Hep C finally and you can dance at your kids weddings!

Virtual hug and I so admire your determination - I can't imagine treating for so long.

My advantage was that by the time I started treating, Interferon was out the door and I hope Riba is following soon

Keep us posted about what's next

~ Linda

[GP7852]

Thanks Linda,I will keep you informed.Just waiting now for my doctors office to call and tell me the trial is ready.I am also waiting on a trial for Harvoni relapsers from the University of Pennsylvania.I have decided whoever calls 1st I am going with,even though my doc is right down the street and the U of Penn is an hour and a quarter away.I dont care,the quicker I start the better.Good Luck to you

[GP7852]

Its funny you should talk about all the treatments we have gone through.I have been with Dr John Santoro since the 80s.He started me buying 6 packs of interferon at a specialty drug store.6 injections came in this 6 pack.I started at 3 million,went from there to 5 million and eventually the 10 million which was so horrible.My mind is so shot I cant even remember all the combos he had me on after that to no avail.Then when I finally cleared on the sovaldi-olysio I was in total disbelief because I was thoroughly convinced that it was impossible for me to clear.That jubilation only lasted a very short while but it was enough to give me the determination to keep trying.I really want to stick around and dance at my kids weddings when that time comes.    Good Luck

[hepcandme]

Have you considered a massage? I had one a week ago and realized how much tension I was holding in my calves, feet and shoulders
Felt so much more relaxed for days and days so highly recommend it - Swedish is great but tell your masseuse that you want a gentle massage...
Go on, treat yourself

[hepcandme]

Many of our hepper friends went through many excruciating treatments back in the days of Interferon for long periods of time - 48 weeks - and the SVR rate was dismal. It's no wonder that so many people refused those regimens

My own "difficult to treat" designation is because I am cirrhotic and the back to back treatments take a toll as well

But I know how bad you must feel and admire your courage to get back on that horse! We here for you. The trend is to treat everyone now, before their disease requires transplant

Your SVR will come. Keep us posted

[GP7852]

I don't know why I keep relapsing but my guess is I must have a difficult sprain of HCV.Its like I have had it for so long that its imbedded in me.Even though my doc told me that this trial he is getting from Merck is 100% permanent cure rate I am still skeptical.The last 2 treatments got me so high when I cleared and left me totally crushed.It makes you feel deceived.

[GP7852]

Yes Linda
My 1st bloodwork after treatment showed the return of the viral load.I did not take ribavirin,doc said the ribo didn't show any difference with the 24 week Harvoni program.Sorry about your relapse on sovaldi.I also did sovaldi-olysio and cleared only to relapse immediately after ending treatment.Thanks for the well wishes and good luck to you too.
                                       Glen

[hepcandme]

And was your relapse 4 weeks EOT or later? Did you take Ribavirin as part of your treatment?
I really feel for you. When I relapsed on Sovaldi, it was just devastating but yours is the only relapse that I recall reading about (but the brain fog continues so there could have been more)
Wishing you good luck on your new treatment and I'm sure it will be even more effective than the latest miracle drug with, hopefully, fewer side effects
~ Linda

[neptune235]

Was wondering, what do you attribute the relapse to?

[GP7852]

My age is 61.I have had hcv since age 16.I cant even remember when I was told I had cirrhosis.My biopsy was at least 10 years ago.I do take very good care of myself.Never any smoking,drugs or alchohol.And so far no nosebleeds since the relapse which is a relief.
                                                      Glen

[babyblue84]

What is your age if you don't mind me asking and how long have you had hcv

[GP7852]

Thanks Dee
I do take magnesium and lots of banannas but that doesn't always work.I really have to keep drinking fluids constantly.When I lay on the couch and the cramps hit the pain is unbearable.I try to stand but its impossible.The trick is to get upright and try to walk to get the blood flowing.I am so anxious to start treatment its making me crazy.The itching is also driving me nuts.I just wish this disease would go back to hell.
                                                     Glen

[Dee1956]

Good Morning, I will look for help and I am sure others will be a long.  We have a list that Nan started where people list their status, I hope this helps a little I will look for more, Dee
Are you using magnesium for leg cramps?  Magnesium relaxes the muscles, I used at one point, a liquid kine

http://www.medhelp.org/posts/Hepatitis-C/SVR--or-Relapse/show/2281769