Hep C Discussion Forum

darkstar · Senior Member

RE: Solvadi & Olysio Relapse??

Isiscat2011 · Guru

darkstar wrote:
Thanks for all of your good wishes and thoughts. After almost 40 years. Interferon for 7 consecutive years (yes, not a typo), and then ifn again with boceprevir and telapravir ribavirin multiple time and then sofosbuvir and simprevir I am ready to clear virus for good. Hepatoma screening MRI on Friday. Hope is an important thing and I am not ready at age 63 to cash in the chips!

Wow, you have really done your time in tx. Hang on, your time for SVR is coming.

How's your liver holding up, darkstar?

darkstar · Senior Member

Guys,

Thanks for all of your good wishes and thoughts. After almost 40 years. Interferon for 7 consecutive years (yes, not a typo), and then ifn again with boceprevir and telapravir ribavirin multiple time and then sofosbuvir and simprevir I am ready to clear virus for good. Hepatoma screening MRI on Friday. Hope is an important thing and I am not ready at age 63 to cash in the chips!

Dzdayscomin · Senior Member

Fireman Rob wrote:
Darkstar,
Thanks for clearing up Gilead's statements. I can't wait for you and Greg to achieve SVR. Keep us posted.
-Rob

Add me to the list of people that would like to see both of you realize some long term success in the the fight against HCV...you definitely have put in your time trying.

Duane

Fireman Rob · Senior Member

Darkstar,

Thanks for clearing up Gilead's statements. I can't wait for you and Greg to achieve SVR. Keep us posted.

-Rob

Tig · Admin

Here is some information from the FDA calendar. ISIS mentioned it yesterday.

http://www.biopharmcatalyst.com/fda-calendar/

Tig

darkstar · Senior Member

Has anyone seen anything on timing for the next FDA approvals??

Groupergetter · Guru

darkstar wrote:
Sorry, haven't been on line for a while. First, my HCV is genotype 1a and has the Q80K mutation. I cleared after two weeks and normalized everything. I was treated for 24 weeks and relapsed 4 weeks after stopping. The comments attributed to Gilead about exercise and diet are simply BS. My level of exercise had declined as my degree of inflammation increased pre-treatment. With treatment, my energy level increased as did my level of exercise and I rapidly lost weight with a healthy diet. My pre- and post treatment mutational analysis showed new mutations. My plan is to start sovaldi and ledipasvir as soon as the second drug is available.

hey, darkstar glad to see you back. Been wondering how you were doing? You and I both relapsed, and yes it is a drag I'm hoping to do the S/L as well. Hope this does it for both of us. Take care.

BobK · Member

darkstar, I'm glad you have a plan of action.

I was becoming worried I was not exercising enough or eating right. I do eat fast food every now and then, etc.

darkstar · Senior Member

Sorry, haven't been on line for a while. First, my HCV is genotype 1a and has the Q80K mutation. I cleared after two weeks and normalized everything. I was treated for 24 weeks and relapsed 4 weeks after stopping. The comments attributed to Gilead about exercise and diet are simply BS. My level of exercise had declined as my degree of inflammation increased pre-treatment. With treatment, my energy level increased as did my level of exercise and I rapidly lost weight with a healthy diet. My pre- and post treatment mutational analysis showed new mutations. My plan is to start sovaldi and ledipasvir as soon as the second drug is available.

Huey · Guru

Hi Bob, i got your message so here is a chime.

The Sugar craving , Me too. What I did was to take probiotics . This helped but not mutch,

I think the sugar craving is caused by the virus and the higher the load the worse it is," I Think" So if you won't to lower your VL, for a short time a liver cleansing supplement will help flush out some of the virons but this must be vary limited. Watermelon is the best thing to satisfy the craving, fructose is the best of all the sugars for you and watermelon has a positive hydrating effect as-well. It does not have to be junk sugar, any sugar will help. Toast is sugar.

We are all in this together keep your stick on the ice. 'Red Green Show'

Huey · Guru

Isiscat2011 wrote:
BobK wrote:
So if Huey's findings are correct, it would seem that there is a direct correlation between the virus and diet...in as much as what types of food one should eat. Cause anti-oxidants are found in foods we eat, correct?
Yes anti-oxidants are found in foods but not in the quantities one gets from supplements (and some people take mega doses). Eating a healthy diet is always good advice but there is no evidence that any specific diet will prevent relapse. There is only so much we can control and trying to control everything will drive one crazy!
It seems more likely that pumping supps into your body during tx could derail tx. I don't believe there is sufficient evidence that supps cause relapse post-tx but I will probably be eliminating most of my supps post-tx as well for other reasons. Mainly, I'm just not convinced they are helping my overall health.

Simple Logic , eliminate the variables less to worry about, Glad your on-board even if for different reasons.

Tig · Admin

Congrats Dee Dee! You should post your happy results in a more appropriate section though! I wish you the very best!

Tig

BobK · Member

That is awesome Dee Dee! I am happy for you.

Might be worth the effort to create a thread or section devoted to diet and health in the way of daily routines, etc. I know there are a lot of factors involved in these new medications, but it is nice to see what others are doing beyond just taking the newer meds. I'm sure everyone that has this virus wouldn't mind seeing what others are doing and things that are helping.

I'm not a health nut but would be willing to alter my lifestyle if it increases the chances of a better outcome in the tx.

Just a thought.

Dee Dee · Senior Member

I had 1a with Q80K , took S/O for 12 weeks and 12 weeks EOT showed no signs of the virus. It can be done!

biggrin

-- Edited by Dee Dee on Monday 22nd of September 2014 03:09:27 PM

BobK · Member

Isiscat2011 - I didn't know that. That is interesting.

Isiscat2011 · Guru

The Q80k mutation is almost nonexistent in 1bs, BobK. It is a 1a problem; about half of 1as in the US carry it.

BobK · Member

@Groupergetter - So sorry to hear that news. I think you are right, there is too much speculations happening.

Did you test positive for the Q80?

Hopefully these newer drugs will do the trick.

Groupergetter · Guru

If someone has conclusive evidence of things that will improve chances for SVR, on S/O please share. Speculation isn't helpful;. I was 100% compliant. Took almost not other meds, no supplements, and ate a somewhat healthy diet during tx. I suspect those with cirrhosis, may need extended tx. My doc didn't order riba thinking the S/O was the cat's meow. Wish she would have now. Who knows, may not have helped. Can't let what's in the past ruin the future. Have too much to be Thankful for. I did start taking supplements after relapse. B complex, and multivitamin. Also started taking glucosamine as I have increased joint pain after tx.

BobK · Member

I had stopped all my vitamins and supplements about 1 month or two before treatment. Initially I did notice that the vitamins did help some with fatigue, but as my liver seems to be getting healthy, I don't notice it that much. The only vitamin that really makes me feel good now and Vit D.

My current diet on tx is not very good. I find that I have a fast food meal at least once a week. And I always crave sugar...

I was planning on starting back on the multi-vitamin after tx, but now I'm definitely not going to do that. I'm just going to try and eat healthy and let my body deal with everything.

Isiscat2011 · Guru

BobK wrote:
So if Huey's findings are correct, it would seem that there is a direct correlation between the virus and diet...in as much as what types of food one should eat. Cause anti-oxidants are found in foods we eat, correct?

Yes anti-oxidants are found in foods but not in the quantities one gets from supplements (and some people take mega doses). Eating a healthy diet is always good advice but there is no evidence that any specific diet will prevent relapse. There is only so much we can control and trying to control everything will drive one crazy!

It seems more likely that pumping supps into your body during tx could derail tx. I don't believe there is sufficient evidence that supps cause relapse post-tx but I will probably be eliminating most of my supps post-tx as well for other reasons. Mainly, I'm just not convinced they are helping my overall health.

Huey · Guru

I don't think that a diet change will release the free radicals fast enough to make a differance. Things like Aloe and strong anti-oxidants are vary potent. I eat what i crave, I find if it don't look good to me , it is bad for me. But I am not making a extrema fad out of healthy , I am drinking a smoothie but one a day.

BobK · Member

So if Huey's findings are correct, it would seem that there is a direct correlation between the virus and diet...in as much as what types of food one should eat. Cause anti-oxidants are found in foods we eat, correct?

Huey, based on what you have researched and your findings, may I ask what you are eating? Activities, etc?

Fireman Rob · Senior Member

That is interesting information, Huey. Send that info my way too when you get it. Funny how this topic is so relevant for me today as the chance of relapse has been wearing on me lately. No use in any of us worrying at this point, I've done all I can to live healthy and mitigate that chance.

Time will tell the truth about the S/O combo. Good Luck Everyone!

-Rob

Isiscat2011 · Guru

Huey wrote:
The reading I have done points to one finding by a Dr. Lemmon who has found a mechanism in the HCV virus that puts the active replication process to sleep. This happens when our metabolic status is somewhat less than Redox or normal. What this means is to stay away from things like liver cleansing herbs and supplements, anti-oxidants and just let your body recoup on it's own, Milk Thistle, Aloe-Vera juice, all this is best to stay away from right after treatment, Waite a year or more. These things cause Redox and that can wake the virus up.

Very interesting, Huey, and I'd like to know more about this. I just started a thread to discuss when to stop and restart supplements for those who are interested, so we can discuss this till we drop or get bored discussing it, whichever happens first! Here it is:

http://hepcfriends.activeboard.com/t58605109/preparing-for-tx-when-to-stop-and-restart-supplements/?w_r=1411327699#lastPostAnchor

Huey · Guru

BobK wrote:
@Isiscat2011 - I completely agree. It is causing a lot of stress on me right now and I'm sure others that read that email blast they sent.
I was waiting to hear back from darkstar, cause I think I read he was Geno 2 and Q80K mutation was present in his case. I was just trying to see if others that relapsed have had a common issue be it the Q80K or diet, exercise...whatever. Trying to find the common denominator even though I know that will probably not show itself. I just think these meds are too new and too much going on that will show a clear cut answer.
I've got about 8 weeks more on treatment and was going to gear myself and put together a plan of action for the next 8 weeks to hopefully improve my chances.
My prayers and thoughts go out to darkstar, even though I know there are more treatments on the way and can be healed once and for all.

Hi,, I am recent SVR and was a geno 3a , The reading I have done points to one finding by a Dr. Lemmon who has found a mechanism in the HCV virus that puts the active replication process to sleep. This happens when our metabolic status is somewhat less than Redox or normal. What this means is to stay away from things like liver cleansing herbs and supplements, anti-oxidants and just let your body recoup on it's own, Milk Thistle, Aloe-Vera juice, all this is best to stay away from right after treatment, Waite a year or more. These things cause Redox and that can wake the virus up.

At least that is what I think and have gathered from my own experience.

BobK · Member

@Isiscat2011 - I completely agree. It is causing a lot of stress on me right now and I'm sure others that read that email blast they sent.

I was waiting to hear back from darkstar, cause I think I read he was Geno 2 and Q80K mutation was present in his case. I was just trying to see if others that relapsed have had a common issue be it the Q80K or diet, exercise...whatever. Trying to find the common denominator even though I know that will probably not show itself. I just think these meds are too new and too much going on that will show a clear cut answer.

I've got about 8 weeks more on treatment and was going to gear myself and put together a plan of action for the next 8 weeks to hopefully improve my chances.

My prayers and thoughts go out to darkstar, even though I know there are more treatments on the way and can be healed once and for all.

Isiscat2011 · Guru

BobK wrote:
I received an email from Gilead that tells on what to do to improve your chances of staying SVR. Some of the things was exercise, eat very healthy, etc.

_________________________________________________________________________________________________________

Okay, this irritates me a little bit. I'd be tempted to write back to tell Gilead to fix their RAVs problem and stop pretending relapse is due to a faulty diet or lack of adequate exercise on the part of the patient!! %&#@!!

skewedButNotBroken · Senior Member

I'm very sorry to hear about your relapse. I know it must be really tough to handle. At the very least, you know that during the 24 weeks of therapy your liver went through substantial healing. That will buy you more time until you are able to treat once again.

BobK · Member

darkstar, I am so sorry to hear that. That concerns me very much.

I received an email from Gilead that tells on what to do to improve your chances of staying SVR. Some of the things was exercise, eat very healthy, etc.

May I ask you if you were exercising or how your diet was during and after treatment? Personally I am eating just okay, but have been eating junk food every now and then and not really exercising very much.

Thanks for sharing.

darkstar · Senior Member

I took the combination for 24 weeks and was undetectable after 2 weeks, relapsed after 4 weeks off meds.

bassetgirl · Veteran Member

hepcfriends.activeboard.com/t58464211/treatment-outcome-thread-svr-or-relapse/ here's another thread to look through: "Treatment Outcome: SVR or Relapse"

BobK · Member

Yeah, I bet the doctor might not like the nurses going around talking like that.

@OldenSlow, I believe this was within the first month of stopping treatment.

I know the odds are in my favor, but like to get all the information I can gather.

OldenSlow · Senior Member

Hi Bob,

I would be interested in knowing at which point post-tx she is seeing these relapses. The vast majority seem to be happening within the first month after stopping treatment, though I've read of a few happening beyond that point. Thus far, thankfully, they have been rare. There have been two forum members that I'm aware of who relapsed after S/O therapy, specifically, and maybe five others who failed using other Sovaldi-based protocols. You might be interested in reading through the following thread:

http://hepcfriends.activeboard.com/t58207768/relapse-with-sovaldi-treatments/

wayne

Dzdayscomin · Senior Member

A lot of people on this forum that are taking that tx represent a pretty good cross section, and I think there is only one that relapsed (not 100% sure on that) so I'd be a bit curious as to why she would make such a casual statement like that ? I would bet that the dr would not be real pleased about that.

I really understand that being a friend and saying that is a bit different, my clinic has reported the complete opposite in the fact that all treated to date with that tx have cleared it.

Seems like putting an un needed or fact based seed in your head at a time you really don't need that. If I were a betting man id say not to worry the odds are in your favor.

Duane

BobK · Member

Hi all,

I was somehow able to get my medication extended for 24 weeks instead of the 12. I had read that there were higher SVR rates at 24 weeks.

Anyway, I am at around 16 weeks and got a call from the nurse from my doctors office. She was just checking in and wanted to make an appointment for me when the treatment was over with some blood work.

She casually mentioned to me that they have noticed some people starting to relapse that were on the Solvadi and Olysio treatment. She is a friend of mine and I think she just kind of mentioned it as a matter of fact, but it kind of sucked a little of the wind out of my sails.

I was wondering has anyone here relapsed after the 12 weeks on this protocol and how many have been able to stay SVR?

Thanks Bob

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