Author Topic: Vosevi log (Read 41512 times)

Patrick226 · « **on:** October 18, 2017, 04:12:15 pm »

First time posting. I was diagnosed in 2011. 26 year old male. Type is 1b. Started Zepatier Nov 2016. UND within 2 weeks. Bloodwork good until approx 4 months after treatment, I relapsed. I started Vosevi one month ago today. Got first bloodwork done today. Will be keeping a log as I don't see many on here with Vosevi. Few side effects so far, some tiredness. We can beat this!

gnatcatcher · « **Reply #1 on:** October 18, 2017, 05:04:39 pm »

Welcome, Patrick! May the Vosevi slay your HCV permanently. Thanks for thinking of others: your log and forum participation will be highly valuable.

Gnatty

sandrooney · « **Reply #2 on:** October 20, 2017, 04:36:33 pm »

Good Luck. Hope all goes well.

Patrick226 · « **Reply #3 on:** October 23, 2017, 06:59:54 pm »

30 days. Everything was within range with bloodwork, and UND VL. Working full time and going to school, so the tiredness is most likely due to that.

gnatcatcher · « **Reply #4 on:** October 23, 2017, 08:05:49 pm »

Glad to read the great news; rooting for things to stay that way!

Full-time work + school = tiredness makes sense to me.

singinasong · « **Reply #5 on:** October 24, 2017, 01:34:06 am »

Awesomesauce! This is good news!

PattheCat · « **Reply #6 on:** October 31, 2017, 10:28:48 pm »

Sounds great Patrick. I am in week 5 of Vosevi. First blood work at 4 wks showed undetected virus. I previously relapsed at 4 wks post tx after 12 wks or Harvoni. Prior to that, relapsed at 4 wks post tx after 12 weeks of Sovaldi, Peg Interferon and Ribavirin. Like you, I have not noticed any side effects.

gnatcatcher · « **Reply #7 on:** November 01, 2017, 05:37:26 am »

PattheCat, since one purpose of this thread is to be a resource for people on Vosevi, could you let us know how you managed to get the Vosevi? On September 19 you wrote that your insurance didn't cover it. Thanks.

Gnatty

PattheCat · « **Reply #8 on:** November 01, 2017, 06:19:31 am »

When I initially contacted my insurance company and looked on this list of approved medications, Vosevi was not one of them. I confirmed by phone that it was not covered. My doc suggested submitting a request and the request was immediately approved, though I'm not sure on what basis. The same company denied my Harvoni prescription and two appeals. I eventually participated in a clinical trial with Harvoni.

PattheCat · « **Reply #9 on:** November 01, 2017, 06:27:57 am »

Patrick - You say you were clear at 12 wks post tx with Zepatier but then relapsed after 4 months (16 weeks)? Wow, that must have been really disheartening. You must have assumed you were cured when your 12 week labs showed undetected virus. I'm sorry about that but hoping the Vosevi will knock it out for you.

gnatcatcher · « **Reply #10 on:** November 01, 2017, 08:30:51 am »

Thanks, PattheCat -- glad your insurance company did the right thing!

Patrick and PattheCat, I'm rooting for both of you -- Go Vosevi !

Gnatty

Patrick226 · « **Reply #11 on:** November 01, 2017, 07:06:42 pm »

Quote from: PattheCat on November 01, 2017, 06:27:57 am

Patrick - You say you were clear at 12 wks post tx with Zepatier but then relapsed after 4 months (16 weeks)? Wow, that must have been really disheartening. You must have assumed you were cured when your 12 week labs showed undetected virus. I'm sorry about that but hoping the Vosevi will knock it out for you.

Yes it was. When i was told about my bloodwork, it was like being told i had it again initially. It's all uphill from him. I wish you all success in your treatment. Good vibes!

PattheCat · « **Reply #12 on:** March 16, 2018, 07:45:54 pm »

I just got the results of my 12-week post-tx labs -

UNDETECTED!!!!!!!!!!!!

Vosevi has delivered!

gnatcatcher · « **Reply #13 on:** March 16, 2018, 08:14:40 pm »

Wonderful! -- I'm so glad that you are well past your personal 4-weeks-post-tx danger zone and are now officially CURED!

PattheCat · « **Reply #14 on:** March 17, 2018, 06:15:00 am »

Thanks Gnatcatcher!

Just looked at your sig and noticed your Fibroscan has gone from F4 to F1-F2. Does that mean your cirrhosis has healed? Wow - that is really encouraging. My Fibroscan prior t o treatment was F1-F2.

I appreciate all the encouragement you provide on this forum.

gnatcatcher · « **Reply #15 on:** March 17, 2018, 07:44:15 am »

Yes, the very first post-treatment FibroScan put me at F3, so I was no longer cirrhotic then. The next was F2-F3, and now F1-F2, so I no longer need ultrasounds 2x/year.

-hope you'll stick around and provide encouragement for others. My time checking the forums is getting more and more limited as my caregiving duties increase.

PattheCat · « **Reply #16 on:** March 17, 2018, 07:50:09 am »

Congratulations! That's fantastic.

Yes - I will stick around the forums. I welcome any advice you might have about how I can be helpful to others.

northfork · « **Reply #17 on:** March 18, 2018, 10:14:41 am »

Congrats on 12 week SVR. Vosevi is the dragon killer.

mcmaklin · « **Reply #18 on:** March 31, 2018, 07:10:40 pm »

Hello
I am waiting for Vesevi. I relapsed after Viekira/Exviera in 2015. I have Genotype 1b and L31M in NS5A region.
1. Do I need to take Ribavirin with this? Is there any advantage of Riba with Vosevi?
2. How do you feel on Vosevi?
3. Do you know why you relapsed before?
4. Where do you have your treatment. Thank you

Here my story:
Compl. Viekira no Riba Nov2015. 1b,TT,F1, 1400000U start of treatm. After 2 weeks 120U. After a month below possib of detect. After 3 months UND.3EOT UND. 4wEOT RELAPSED,14Dec2016 VL 27000 IU.mL,Feb 2016 VL 24296 IU/mL, May 2016 VL 106675 IU/mL .L31M in NS5A.Y93H not pres. No NS3 D168/A/F/H/N/Y

northfork · « **Reply #19 on:** March 31, 2018, 09:14:12 pm »

I relapsed on Daclatasvir and Asunaprevir combo and after 24 weeks of Harvoni. I was told I was NS5a resistant, though I never had a test that I know of. I was in a clinical trial for the first treatment. I was also in a clinical trial for the drug that became Vosevi. I did not take ribavarin with it, and 12 weeks did the trick. 1 year post treatment and undetected. Genotype 1b.

mcmaklin · « **Reply #20 on:** April 01, 2018, 11:40:48 am »

Congratulations! Any knowledge of simillar cases? I wonder of Ribavirin would add just a pain of it may do good things. Maybe Vosevi would be enough for me. Any side effects?

Lynn K · « **Reply #21 on:** April 01, 2018, 12:52:43 pm »

Hi mcmaklin

This is from the current recommendations from the AASLD (American Association for the Study of Liver Diseases)

https://www.hcvguidelines.org/treatment-experienced/gt1/ns5a

NS5A Inhibitor DAA-Experienced Genotype 1 Patients

Daily fixed-dose combination of sofosbuvir (400 mg)/velpatasvir (100 mg)/voxilaprevir (100mg) 12 weeks

Recommended Regimen
Sofosbuvir/Velpatasvir/Voxilaprevir
The placebo-controlled, phase 3 POLARIS-1 trial evaluated a 12-week course of the daily fixed-dose combination of sofosbuvir (400 mg)/velpatasvir (100 mg)/voxilaprevir (100mg) in patients with a prior NS5A inhibitor-containing DAA regimen. The majority (61%) experienced a failure with a combination regimen of an NS5B inhibitor plus an NS5A inhibitor, such as sofosbuvir/ledipasvir (Bourliere, 2017). The overall SVR12 rate was 97% (146/150) in genotype 1-infected patients. SVR12 rates were 96% (97/101) for participants with genotype 1a infection and 100% (45/45) for those with genotype 1b infection. A single genotype 1-infected patient experienced relapse; this individual had subtype 1a infection and cirrhosis. Baseline RASs and the presence of cirrhosis were not significant predictors of virologic failure in genotype 1 infection. Serious adverse events were similar between the placebo and treatment arms; only 1 patient discontinued therapy due to an adverse event. Headache, diarrhea, and nausea were more common in those patients receiving sofosbuvir/velpatasvir/voxilaprevir compared to placebo.

This is Vosevi there is no mention of using Ribavirin.

northfork · « **Reply #22 on:** April 01, 2018, 10:18:56 pm »

Mcmaklin,

The only side effects I had was slight nausea in the morning after taking my pill.
The nausea wore off after a couple of hours.

Lukey · « **Reply #23 on:** May 10, 2018, 09:17:24 pm »

Quote from: northfork on March 31, 2018, 09:14:12 pm

Viral load 890,000 approx. F2. Undetected after week 1.

That sounds like me. I relapsed Harvoni 8 weeks in 2015. I now have F2 and VL of about 540,000.
I may go on Vosevi soon. Glad to hear of your UND status.

mcmaklin · « **Reply #24 on:** October 25, 2018, 05:37:56 pm »

Dear Friends having Vosevi. WHEN which week on treatment you were UND on vosevi?
1 am week 6 and am <12 detected.

Lynn K · « **Reply #25 on:** October 25, 2018, 07:00:08 pm »

The only test that matters is the 12 week post treatment test result. All on treatment testing is really just to ensure patient compliance as everyone will either test not detected or very nearly so on treatment.

Try not to worry about being weakly detected on treatment. It doesn’t mean anything

andrew j · « **Reply #26 on:** October 27, 2018, 05:47:20 pm »

Hi mcmaklin,

It's that huge drop they're looking for at week 4 / 5 / 6 - and that's most definitely you!

I had 18 left at about week 5 (Harvoni).
It felt to me as if the thing ... the beast, was finally resolving itself at about week 8.
Don't know if that means anything, or was just a by-product of that hyper sensitivity so many of us feel going through Tx.

It's good that you've got the security of another month's Tx.

You should be fine.

A.

mcmaklin · « **Reply #27 on:** November 02, 2018, 11:38:16 am »

Hello here again.
VOSEVI (not Harvoni, sorry mistake). End of Week 7 this Monday, still detected <12.
I am thnking of making treatment longer a month with Vosevi (paying for this).
I read a few articles here and how should it be, when should it be UND while on treatment? What shall I do?

2ndTreatmnt geno 1b- Vosevi 12 weeks - SOT Sept 12 2018 to EOT Dec 5 2018. Pre-treatment - VL 1.4 mil, ALT 45, AST __, ALP 69, GGT 90, bilir 16. 2 weeklabs:VL 49, ALT 26, AST __, GGT 53. Bili 21, 4 weeklabs:VL <15, GGT42 other normal, 5weeklabs:ALT 17,AST 27, Bili 11.8, ALP 68, GGT 36 ... VL 12, 6weeklabs ALT 19, AST 26, Bili 16,20, GGT35, VL<12
7week GGT34, ALT 19.1 AST 26.4, Bili 17,9 , VL<12

Lynn K · « **Reply #28 on:** November 02, 2018, 02:29:13 pm »

Look at some of dragonslayers posts from 2015. He was detected at 4 weeks post treatment but was still able to achieve SVR12. He is still cured today. While his situation was unusual it is not unheard of.

Not detected on treatment is not a requirement. The only test that matters is the one done 12 weeks after you have taken your last pill.

andrew j · « **Reply #29 on:** November 03, 2018, 05:58:07 pm »

Hi mcmaklin,

Again - everything looks fine!
Your readings are just where they should be.
There are - or were, when you got your blood test done - a few stragglers left, sure - and you've got - what? - five more weeks of Tx?
Chances are you're already clear!

(If there were more than 50 there - or if there were hundreds - there might be some cause for concern - but that's not the case in your situation) ...

Many have been where you are (I was one of them) - and cleared just fine.

Relax.
All is well!

mcmaklin · « **Reply #30 on:** November 09, 2018, 11:50:24 am »

Hello, news from last tuesday. Undetected! I will also have soon results from Monday from another laboratory.

Lynn K · « **Reply #31 on:** November 09, 2018, 12:36:10 pm »

Congrats!
Now all you need is the 12 week post treatment result to confirm cure

mcmaklin · « **Reply #32 on:** November 19, 2018, 10:11:09 am »

Dear Friends, I do not know what to do and what it means.

I was at my official doctor, I told them that I want to buy more Vosevi, they said that they cannot discourage me of this, if I want so.

My labs from official place of treatment from the 5th of Nov UND, I tested myself again the 6th of Nov and as well UND.

Today I received my labs (as I wanted to make sure what to do - I am going to buy more Vosevi) and my labs from the 15th of Nov (after the beginning of week 10, which is 9 days later) are saying <12 again and that they found the HCV sequence.

I think I should do another test today again.
But what does it all mean.
My labs from the 15th GGT27, Alt 16.5, AST 23.7, Bilirubin High 23,30 and normal would be up to 21, VL <12

Lynn K · « **Reply #33 on:** November 19, 2018, 06:29:45 pm »

It means the only test that will tell you if treatment was effective and you are cured is the test for the virus drawn 12 weeks after you have finished treatment.

I assume all testing you are referring to is the HCV RNA by PCR test or similar name that is looking for the Hep C virus itself and none of these tests are an antibody test as anyone who was ever infected with hep c will forever test positive for hep c antibodies.

You can drawn no conclusions or meaning from any on treatment test or even the end of treatment test unless it is definitively positive with a high viral load.

Any test result with a below the LLOQ for the test but detected while on treatment has no clinical significance.

We have had a couple of people here who had similar test results as yours while on treatment who went on to achieve SVR12. The only test that has meaning is the one drawn 12 weeks post treatment all other earlier testing is statistical noise.

Hang in there and best of luck.

badbradley · « **Reply #34 on:** November 19, 2018, 07:08:39 pm »

Quote from: mcmaklin on November 19, 2018, 10:11:09 am

Dear Friends, I do not know what to do and what it means.

I was at my official doctor, I told them that I want to buy more Vosevi, they said that they cannot discourage me of this, if I want so.

My labs from official place of treatment from the 5th of Nov UND, I tested myself again the 6th of Nov and as well UND.

Today I received my labs (as I wanted to make sure what to do - I am going to buy more Vosevi) and my labs from the 15th of Nov (after the beginning of week 10, which is 9 days later) are saying <12 again and that they found the HCV sequence.

I think I should do another test today again.
But what does it all mean.
My labs from the 15th GGT27, Alt 16.5, AST 23.7, Bilirubin High 23,30 and normal would be up to 21, VL <12

July 2018

SVR was achieved by 32/33 patients (97%) with detectable and even by all 14 patients (100%) with quantifiable HCV RNA results at the EOT.

CONCLUSION:
Detectable and even quantifiable HCV RNA results are quite frequent if highly sensitive HCV RNA assays are used. However, treatment prolongation is not indicated, as SVR rates remain high in these patients.

https://www.ncbi.nlm.nih.gov/pubmed/30022590

mcmaklin · « **Reply #35 on:** December 26, 2018, 06:44:00 am »

Hello I would like to update you and ask for some help.
So far I took Vosevi for 12 weeks, than, because of virus still detected I decided to buy privately more Vosevi for 1 month. So the 1st of Jan I am ending week 16.
Then my question shall I try to take for one more month Epclusa from India that I have at home, just in case. I know it would be a less potent drug but maybe if I have no side effects and if it does not harm maybe it would be a wise decision?
Here my results:

2ndTreatmnt geno 1b- Vosevi 12 weeks - SOT Sept 12 2018 to EOT Dec 5 2018. Pre-treatment - VL 1.4 mil, ALT 45, AST __, ALP 69, GGT 90, bilir 16.

2 weeklabs:VL 49, ALT 26, AST __, GGT 53. Bili 21,

4 weeklabs:VL <15, GGT42 other normal

5weeklabs:ALT 17,AST 27, Bili 11.8, ALP 68, GGT 36 ... VL 12,

6weeklabs ALT 19, AST 26, Bili 16,20, GGT35, VL<12

7week GGT34, ALT 19.1 AST 26.4, Bili 17,9 , VL<12

5 Nov Official test at the hospital UNDETECTED
8week (6nov) GGT31, ALT15.6, AST22.4, Bili 16.6, UNDETECTED
15 nov after the beginning of week 10
GGT 27, Bilirubin 23,30High, ALT 16.5, AST 23.7, VL<12

15 Nov a few hours later UND

19 Nov ALT 17.10, ast 26.5, ggt28, bili 17.5, UND

3 DEC 12week ALT20,7. AST24,3, GGT 27, Bili 12,10, UND

4 Decision I make my treatment longer one month more with Vosevi

21 DEC. ALT 28.5 AST 27.4 bili 13, phosphataze 76, GGT 32, UND

My Vosevi finishes 1st of Jan, can I take one more month of the generic Epclusa that I have at home?

Lynn K · « **Reply #36 on:** December 26, 2018, 02:55:56 pm »

I would recommend you speak with your doctor and stop any additional treatments

mcmaklin · « **Reply #37 on:** December 29, 2018, 10:18:00 am »

Hello, I would like to emphasise that I am not doing anything with a knowledge of my doctor. Doctor told me that there is no data, and that he things that anyway because I extended Vosevi Treatment to 16 weeks there should be no virus. That the drugs are not toxic and if I want to "eat" more drugs nothing should happen because there is no virus replication. So it can be only my decision.
As you probably know I was a relapser after Viekira/Exviera and genotype 1b. I have a big trauma when I found myself in 1%.

Can you please advice me - with all the scientific knowledge (I made treatment longer because I was UND after month 2, and because I am TT and it looks maybe a slow responder) - what harm or bad can happen if I now add one month with a generic Epclusa that I have on my shelf. My current treatment finishes the 1st of Jan so it is urgent to know. I am thinking of extending treatment one more month with less potent drug. My way of thinking that it may help if there are some hidden virus in body tissues. If there are not it does not matter, but I can win here. If there is something still there I would relapse when I stop. I have no side effects.

Can taking less potent drug (Epclusa after Vosevi) cause any problems. Is this good for organs >

Lynn K · « **Reply #38 on:** December 29, 2018, 04:50:12 pm »

All these drugs are very potent.

You are sailing into uncharted territory and making yourself into a lab test there is no data. No one has done what you propose to do.

The general thinking in science and medicine is to not take more of a drug than is needed or for longer than required.

andrew j · « **Reply #39 on:** December 29, 2018, 05:07:54 pm »

By the looks of it, you were clear at the EOT i.e. in early-mid Nov.
I think you can afford to leave it now.
In the extremely unlikely event that you have relapsed (Vosevi is a powerful drug, with a close-to 100% success rate) - do another Tx.

... If you can't not take the Epclusa (?!) - I don't think it'll do you any harm.
But again - statistics-wise - it's next to impossible that you're not clear already.

mcmaklin · « **Reply #40 on:** December 29, 2018, 05:27:10 pm »

Dear Moderator, so it would be unwise to continue, but what if - then I would say oh I why I have not done it especially while drugs are in my closet.
Taking less potent drugs may be harmful?

andrew j · « **Reply #41 on:** December 29, 2018, 05:48:45 pm »

Assuming that you had some sort of resistance to the Zepatier - what are the chances that you also have some sort of resistance to the Vosevi?!!
The chances of that are so remote as to be infinitesimal - and on top of that, you've taken an extra month's worth of Vosevi!

Remember - we are talking almost 100% success rate with these drugs.
... You must be clear!!

If (by some miracle) you have relapsed - put the Epclusa towards another Tx.

mcmaklin · « **Reply #42 on:** December 29, 2018, 06:36:15 pm »

It was not Zapatier - it was Viekira+Exviera.
Before I started Vosevi my doc tested that my virus is suspectible for Vosevi apart form saying that I have L31M

mcmaklin · « **Reply #43 on:** December 29, 2018, 06:37:37 pm »

1. and EPLCUSA IS LESS POTENT THAN VOSEVI - so what are you saying me to put?

2. What wrong would cause making treatment one month longer with the Epclusa

andrew j · « **Reply #44 on:** December 29, 2018, 06:45:26 pm »

Oops ... sorry about that. I was looking at Patrick's post!

Reading over your posts again, I would still advocate leaving it for now - and seeing how you get on.
... But it's up to you, of course.
From where I'm standing, you're going to win either way!

Lynn K · « **Reply #45 on:** December 29, 2018, 09:11:30 pm »

Just Lynn

All these drugs are potent medicines they just at better at some species of virus than others that does not make one less potent.

I have no idea what difference it would make even on whether you will be cured with or without. There is zero data no one has done what you propose you are entirely in experimental treatment mode.

I would just do what your doctor says.

I am not a medical person of any kind I do not work in the medical field I have no medical training I am simply a patient who had hepatitis C for 37 years and is living with liver cirrhosis. What knowledge I have is from reading a lot because I have been in this situation since 1978 and known I had hep c since 1990

mcmaklin · « **Reply #46 on:** December 30, 2018, 07:18:23 am »

To understand it with your great knowledge that I do not have. May less potent drugs after Vosevi cause that I will not be UND? Is there ANY logical possibility of this to happen when I take Epclusa now? Thank you for your patience - this is the basic question. If this is possible to happen I will stop the treatment definitely.

Lynn K · « **Reply #47 on:** December 30, 2018, 10:14:12 am »

Just do what your doctor recommends

The drugs are not less potent just different from each other. Some are more effective against one species of hep c than another.

mcmaklin · « **Reply #48 on:** December 30, 2018, 10:26:07 am »

Vosevi is sof, Vel and Vox so continuing with Sof and Vel only would be less potent

Lynn K · « **Reply #49 on:** December 30, 2018, 11:53:08 am »

Just follow your doctors advice.

Mugwump · « **Reply #50 on:** January 01, 2019, 02:25:30 am »

Quote from: Lynn K on December 30, 2018, 11:53:08 am

Just follow your doctors advice.

Usually the best advice. I doubt that taking the extra meds will make much of a difference to mcmaklin in achieving SVR. As you said this is "uncharted territory".

We really do not know how RAVs are created with a retro virus like HCV, but I would strongly suggest to mcmaklin that, even though taking more meds than necessary might do no harm, doing so may suggest to others that too much is not enough. The same problem occurred with physicians and penicillin and goes way back to the 1950-60 when it was prescribed for just about everything so that the patient had a sense that the meds were doing something. WHAT A MISTAKE THAT WAS!!
All that aside logically HCV should not be as prone to genetic variation as the common flu and cold because the methods of transmission are much slower. So chances are if one extremely unlucky individual does accidentally create a RAV it has little chance of making it out into the wild the way say, a disease like Norwalk or GI bugs, etc do.

Hopefully HCV RNA is not as prone to genetic modification by exposure to medicines the way bacteria have proven to be; and the holy grail SVR really is the end of the line for HCV and like polio it can eventually be eradicated with DAA treatments or even a future vaccine.
HAPPY NEW YEAR FROM

ERIC THE MUGWUMP!!!

mcmaklin · « **Reply #51 on:** January 01, 2019, 04:13:50 am »

Please clarify this because I do not understand it is extra important for me to take the decision because tomorrow I am out of the Vosevi. Doctor say that he thinks it would be good to stop, although, as there is no replications of the virus - eating more drugs should not do any harm.
The question: What way continuing the treatment when you know you are UND for 2 more weeks with just removing one drug (not the most important drug going from Vosevi to Epclusa ) could cause RAVs? I know there are no trials about this but how could it be technically possible? That there would be an advantage of stopping . What, that the virus could brake through because I remove Voxilaprevir? Or that my Immune system may have problems with this and stop killing the virus?
I was a slow responder so this is why I am thinking of it. If the virus is still hidden when I stop drugs it would multiply and survive. So why not to take for a while more especially when I have it on the shelve. Thank you for all your knowledge here and it is urgent.

Lynn K · « **Reply #52 on:** January 01, 2019, 04:47:34 am »

On treatment testing means nothing the only test that matters is the 12 week test after finishing treatment.

If you continue taking these meds there is no way to know what may occur no one had done what you are proposing to do.

“Doctor say that he thinks it would be good to stop”

Listen to your doctor.

mcmaklin · « **Reply #53 on:** January 01, 2019, 05:24:16 am »

But please help me understand what I asked. You saw problems of slats1056 here on the forum. What way continuing the treatment when you know you are UND for 2 more weeks with just removing one drug (not the most important drug going from Vosevi to Epclusa ) could cause RAVs?
What is my risk here? Am I not increasing my chances do be cured?

My way of thinking was: The vosevi hits the virus at 3 spots, and the Epclusa hits it at two spots. So I would be continually hitting 2 of the 3 spots for an extra 4 weeks. Could it cause ravs at the two spots I would be hitting with the Epclusa?

Or maybe, I have no such knowledge, if Vosevi 4 months would not work this means that it was able to only supress the virus while on drugs and making treatment longer does not make any sense. I know I must take the decision myself, but what are the risks when I see more benefits of it

If the answer is unknown - maybe at least this: Does Vosevi or Epclusa affect the immune system, or it just works exactly the same while on treatment?

Lynn K · « **Reply #54 on:** January 01, 2019, 02:34:00 pm »

All of the new drugs are in the class of DAA’s Direct acting antivirals so primarily they simply attack the virus. However, there are a number of people here who complain of long term post treatment side effects of taking any one of these new meds.

No one knows what the long term effects of taking these new meds for extended duration. The goals of therapy have been to reduce the duration of treatment not increase it. This is why some populations of patients may only need to take several types of these new DAA meds for as few as 8 weeks. They are studying the possibility of reducing treatment even further.

Your doctor has recommended you to stop treatment. He has years of medical training along with ongoing training every year he is a doctor. Unless you have years of medical training I suggest you follow your doctors recommendations.

mcmaklin · « **Reply #55 on:** January 01, 2019, 02:40:18 pm »

Dear Moderator,

What long term effects you mean?
(on drugs I have no side effects at all) And there were trials with Epclusa 24 weeks.

I feel this is very important what you are saying now. I should take the next pill in 14 hours. I was trying to study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4600576/
I am just thinking if taking more can increase my SVR (As I have the generic drugs here already). On the other side it should have worked already. I read in the article that the virus is somewhere hidden in the liver cell for 2 weeks sometimes. I am also trying to find out what do you thinkg in my treatment history about the sudden VL<12 after I had UND and the same day again UND, and of what do you think that I responded slowly (UND after 2 months and then one episode of <12)

I am very close to not to take it more, although I am extremely affraid. I WOULD MAKE IT LONGER IF I HAD MORE VOSEVI, longer for 2 weeks to have full 2 months on UND. But Vosevi without Voxilaprevir, I do not know how important is the Vox. Sorry - tomorrow the decision will be taken, so please give me some patience, I indeed need you now

Lynn K · « **Reply #56 on:** January 01, 2019, 02:49:37 pm »

Just Lynn ok I’m just a volunteer I am not in the medical field I am simply a patient who had hep c for 37 years and was diagnosed with cirrhosis 11 years ago. I just read a lot.

Some folks here believe they have side effects from treatment like chronic pain and lowered quality of life. Look around at other posts if your interested in the subject.

You are considering mixing one treatment post another on your own advice.

Don’t how many times I can say this trust your doctors opinion.

Or do what you want on your own advice but I don’t think most would agree with your decision.

mcmaklin · « **Reply #57 on:** January 01, 2019, 02:52:10 pm »

Lynn, I have corrected my post a bit, Please have a look if anyone here has anything to add. And again thank you for your patience.

mcmaklin · « **Reply #58 on:** January 01, 2019, 02:53:29 pm »

And could those post treatment effects appear just after they finish the treatment while not on treatment?

Lynn K · « **Reply #59 on:** January 01, 2019, 03:02:07 pm »

Don’t know not a doctor.

Follow your doctors advice

Lynn K · « **Reply #60 on:** January 01, 2019, 03:07:38 pm »

“I am also trying to find out what do you thinkg in my treatment history about the sudden VL<12 after I had UND and the same day again UND,”

My thinking is why are you testing so much

On treatment means nothing it only proves you are taking your medicine. Everyone will have an exceedingly reduced viral load to not detected on treatment.

The only test that matters is the 12 week post treatment test every other test before that is noise. All tests before then won’t tell you if you are cured or not. We had a couple of people here who are weakly detected four weeks after finishing treatment but went on to achieve SVR at 12 weeks post.

I understand your concerns but we can’t stay on treatment forever stop treatment and find out if it worked and go on from there. These new drugs are highly effective I strongly believe that you are cured now. But again I am not a medical professional, but your Doctor, who is a medical professional, did say you should stop taking treatment.

mcmaklin · « **Reply #61 on:** January 01, 2019, 03:10:29 pm »

Thank you, I was trying to look a bit of Postreatment forum. Do you remember someone who was feeling well on treatment and than started to have some unwell feeling after he finished?

It was coincidence I had tests twice the same day. I was still in old trials (they took 5 years with my previous Viekira/Exviera - I told them that I take vosevi but it was a postreatment observation, so they say that it does not matter)

Lynn K · « **Reply #62 on:** January 01, 2019, 03:14:10 pm »

I don’t personally recall but one person I am also answering is saying the may have developed symptoms I don’t recall how her treatment went.

You are very likely cured why increase you risk of any potential post treatment issues

Follow your doctors advice

mcmaklin · « **Reply #63 on:** January 01, 2019, 03:28:30 pm »

But you were taking Harvoni for 24 weeks with Riba. I guess Harvoni was much worse drug.

Lynn K · « **Reply #64 on:** January 01, 2019, 03:36:42 pm »

I treated 3 times in the past with interferon based treatment had no response to interferon infact my viral load actually increased on treatment. I was diagnosed with cirrhosis 7 years before any of the new DAA’s were approved. So basically during that time I was waiting to develop decompensated cirrhosis and die from liver disease.

When the new DAA’s finally we’re approved I treated with Sovaldi/Olysio for 12 weeks but unfortunately was found to have relapsed 12 weeks after treatment ended. The next month Harvoni was approved so because of my multiple treatment failures and my long-standing liver disease my doctor decided that treating with Harvoni and ribavirin for 24 weeks would be the best choice for me at that time.

That was the recommended treatment protocol at that time for a patient like myself. It is known that people who were null responders are more difficult to cure. It is also know that those with cirrhosis are more difficult to cure. In addition I had failed one of the new generation DAA’s. In fact when I joined this forum I had just failed Sovaldi and Olysio and was the first treatment failure here.

mcmaklin · « **Reply #65 on:** January 01, 2019, 04:06:35 pm »

Thanks God and the science it helped you.

I think I will stop. They should help - this was so long. I am not cirrotic, my genotype was 1b not 1a. I had no Y93h only L31M. I was not taking Riba though. I am not going to experiment just to experiment. Nobody was taking the Vosevi for 16 weeks, just I know one cirrotic person from another forum and very ill who didi it. With genotype 3. And the more I started to feel those drugs in my muscles some strange being tired, I had that feeling but I thing I have enough of these drugs.

Lynn K · « **Reply #66 on:** January 01, 2019, 04:41:15 pm »

Yes thanks

I owe my life to Michael Sofia the inventor of Sovaldi which is the primary ingredient in Harvoni

I really do believe stopping is the best choice I doubt it will change your treatment outcome

Best of luck and have a great new year!

andrew j · « **Reply #67 on:** January 05, 2019, 04:22:14 pm »

I think you've made the right decision, mcmaklin.
Hopefully you feel that way, too!

16 weeks was routinely prescribed in Australia, soon after the new meds became available there, 2 or 3 years ago.
(I'm not sue what the current situation is).
At least now you can have a clear shot at another Tx if the unthinkable happens and you don't clear this time.

... But how likely is that?!

Best wishes - and hopefully you're doing OK today!

A.

mcmaklin · « **Reply #68 on:** January 20, 2019, 06:36:51 pm »

What is Ribavirin for, to secure what? To secure the UND while on treatment (in harder cases then mine) or to secure (I know it means too much because anyway 12 weeks after the EOT is more important) or maximise probability of the SVR after treatment?

My way of thinking is that when virus disappeares and goes to UND while on treatment, with Riba or without it - is just the same? Or I am only quite right? Or is the Riba for hard cases to help to ensure that patient goes to UND while on treatment? When he is UND

without Ribavirin does it mean the same as if he would take the Riba? I am lucky to be UND without Riba while treatment. I am UND at the EOT and now waiting for the test that I will do a month after EOT>

Mugwump · « **Reply #69 on:** January 20, 2019, 07:33:36 pm »

Ribavirin is not a direct acting drug. It does not rely upon working inside liver cells to stop the replication of hcv. So the concentrations in the blood are how it is absorbed. Unfortunately it also effects the replication rates of cells that the body requires naturally and some people like myself do not tolerate it well and must have their dosages reduced during treatment.

The necessary reduction of the levels of ribavirin during my first treatment in 2004 most likely lead to my first treatment failing. My blood cell counts became dangerously low and the drug level was halved by the specialist.
What ribavirin does is give the body a higher chance of clearing HCV with the human immune system because it slows the replication of HCV drastically. But it does not completely halt HCV replication the way new DAA treatments can. The dosage levels necessary to completely halt HCV replication using ribavirin alone could be fatal, that is why it is used only in combination with other drugs and at levels that do not seriously harm the individual.

mcmaklin · « **Reply #70 on:** January 20, 2019, 08:23:40 pm »

Thank you. So does it mean when you become UND while on treatment which is the aim while on treatment, does it mean that you maybe would not be able to achieve without adding Ribavirin?
As I said, I achieved UND on Vosevi, without Riba in Week 8 or 10 the most.
Does it prove that Ribavirin was not necessarry and would not change anything? (maybe I would be UND any faster only)?

Lynn K · « **Reply #71 on:** January 21, 2019, 02:55:41 am »

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099343/#!po=0.724638

Mechanism of Action of Ribavirin in the Treatment of Chronic Hepatitis C

“the mechanism of ribavirin action against this virus is not clearly understood. This article will review proposed mechanisms of ribavirin activity, along with their supporting data, covering ribavirin's roles in the direct inhibition of hepatitis C viral replication, the inhibition of inosine monophosphate dehydrogenase, the induction of mutagenesis to the threshold of error catastrophe, and immunomodulation.”

Lynn K · « **Reply #72 on:** January 21, 2019, 03:05:06 am »

For a patient like myself being a 3 time null responder to interferon based treatment including with and without ribavirin plus having a history of cirrhosis the recommended treatment with Harvoni would normally be 24 weeks. But since I also failed a round of treatment with 12 weeks of Sovaldi/Olysio and was starting to run out of options as I had cirrhosis for 7 years at that point and was having symptoms of advancing liver disease I discussed with my hepatologist the idea of adding ribavirin to my 24 weeks of Harvoni.

She agreed I might need all the help I could get so we added ribavirin part way into my treatment so I ended up taking 15 weeks of ribavirin although I did have to dose reduce because I was becoming very anemic as I had in the past when taking ribavirin.

For me that did the trick 24 weeks of Harvoni and 15 weeks of ribivirin and I was cured 4 years ago this May when I took my last pill.

For me ribavirin was extra insurance.

I was not detected at 4 weeks of treatment and at EOT with sovaldi/Olysio but was found to have relapsed 12 weeks after stopping treatment. On treatment testing means little to nothing it really only confirms patient compliance as most everyone will test not detected on treatment and even the few who don’t several have still gone into acheive not detected at 12 weeks post and were still cured.

mcmaklin · « **Reply #73 on:** January 31, 2019, 05:43:03 am »

I did a VL test 2 days ago and the liver panel.

For now I have: AST 30, ALT 23,6, Bilirubin 16,40 Phosphatase 74, GGT 30

It is 28 days after EOT, and today I got the news that HCV RNA NOT FOUND.

To remind you I was 16 weeks on Vosevi because I was UND in week 8 and then I had for a while again <12.

I had a big trauma because after my previous treatment in 2015 week 3EOT was UND and week 4 was 27000.

How big is my chance for the SVR?

Lynn K · « **Reply #74 on:** January 31, 2019, 10:54:04 am »

“How big is my chance for the SVR?”

For Harvoni people who make it to SVR 4 I have read the odds of being SVR 12 are about 98.5%

I am sure it is similar if not better odds with Vosevi

Congrats and good luck

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