Should I extend treatment on Harvoni !!

[pacman1372]

Dear all , a very good day to everyone and i hope that you all are well .

Call it paranoia , or insurance , or anxiety , i cant find the right word for it !!

So here is my question .

I am 43 , geno 1A , treatment experienced as in : 8 years ago , did 24 weeks of riba and inf and was taken off due to horrid side effects , had cleared at week 12 but virus bounced back within a month of getting off the tx .

I Started Generic harvoni 10 weeks ago and had a viral load of 4.2 mil at Sot , fibroscan score was 5.2 , was Negative for the virus at week 4 and am on week 10 now with 2 more weeks to go .

Being in India , harvoni is freely available here now and i was wondering if i should go another 4 -6 weeks , ie : do 16 -18 weeks instead of the 12 .

I understand and have read the recommended duration chart by Gilead and see that i fit the category of 12 weeks , its just that i want to be 100% sure that i get this virus done and over with , once and for all .

I also know that God forbid i relapse this time due to some reason , i would have to do 24 weeks next time , probably with riba involved ..

Just wanted to know the views of others and if you guys would do 16 or 18 weeks if you could get the meds for cheap and freely available to yourselves .

I hope that i will get some responses .

Wishing you all well

God bless and warm regards  

[pacman1372]

Hello my friend Darbara and thank you for your good wishes .

Vl test here costs about 7500 - 8000 inr .

Hope you are doing well .

best wishes always ...

[darbara]

ok, yes all good just finished 8 weeks viral load less than 25. Alt and AST  NORMAL RANGE AFTER MANY YEARS so its clearly working for me but lets see

[pacman1372]

Dear Dointime , hello and hope that you are well .

thank you for your kind words and good wishes .

Wishing  you the best

God bless and warm regards .

[darbara]

Excellent so glad.
BTW how much does the viral load test cost in India ?

[dointime]

I'm so happy for you pacman.  You had a hard struggle to get your meds, like a lot of us, and now you are getting the rewards,
dt

[pacman1372]

Ah and yes , forgot to mention ,

alt and ast / sgot and sgpt are both at 15 .

best wishes and warm regards
God bless ...

[pacman1372]

Dear all , Good day to you and i hope all are well .

I had last  posted here nearly a month ago when i had finished my 12 weeks of tx and had got my vl test reports .

I have now got my latest viral load test done .

result of 4 weeks post EOT is NEGATIVE / NO VIRUS DETECTED :)

Wanted to share with everyone here and thank you all for your prayers and good wishes .

God bless and warm regards ...

[Doggie]

Hi there,
Are there any side effects with Harvoni alone?  I hear there are side effete with Riba, can someone share their exp?

[darbara]

search the forum for Harvoni side effects. There are side effects with Harvoni each individual has its own kind the common ones being headache and fatigue. Riba has more.

[Dil310]

That's great  !
Congrats dear Pacman.

[pacman1372]

thank you dointime and Darbara .

best wishes always .

[darbara]

Great !!!!!

[pacman1372]

Dear all , got my viral load report just now , hcv rna = NEGATIVE .

Lft is all normal too .

Next test ( eot +4 ) will be on the 1st of feb .
I will update when i get it done .

best wishes to all
God bless and warm regards ..

[darbara]

Realistically it has a cure rate of 90 % so 1 of 10 relapses.
We are all different . The Pharmas always portray a rosy picture, the truth sometimes is not BUT Harvoni is the best out there for the specific genotypes 1, 4, 5 & 6 yet again it does not work for everyone.

Maybe another one geno 7 comes up soon. Lol

BTW there are tons for sites besides Medhelp for stats of losers and winners in the HEPC cure.

[susan400]

There are still a few unlucky number of people who have not cleared using Harvoni. There is even one of said people, who is a member on this forum on Medhelp.  It(Harvoni) is the closest thing to a cure we have, but still realize that if there is one that actually posted on Medhelp, how many others are there that don't come on Medhelp? I would think that there is still about 5% of of people who aren't fortunate enough to get the cure.  I will probably be doing Harvoni some day, but just not jumping up and down and in a hurry to do another treatment yet.  I have to have dental surgery at the end of the month and also have a lot of 'personal life' stressors at the moment.  Oh yea, and my thyroid can't make up it's mind what it wants to do either. After my last treatment using the Sofusbuvir (Sovaldi) + plush Peg-Riba.., about 3 mon. post treatment, my thyroid went wacky and went way hypothyroid. Weird thing is, it was normal pre-treatment and all the way through treatment.  So, doctor put me on Synthroid.  The Synthroid was making me feel very weird and I told the doctor that I did not want to stay on it but just a short period of time and that I would want to wean off of it.  So, I was able to get off of the Synthroid, my thyroid was testing normal again, for about 3 mon. and now it's going completely in the other direction with NO Synthroid and it's running Hyperthyroid now.  Since I have no goiters and no real symptoms from the hyperthyroid, I told my doctor that I wanted to just monitor it. Anyway, this last treatment has really caused me alot of issues. My osteopenia also worsened after this last interferon exposure. When I had a dexascan about 6 mon. post treatment, it showed my numbers had drastically worsened and my bones were even thinner, had dropped down to one number in front of osteoporosis. I'm only 54, too young to be dealing with fragile bones. Anyway, so, you can see why I'm waiting for things to improve with the rest of my body before putting it through any more treatments.  The Hep C is not progressing any in me and my fibrosis score is fairly low, so it's not like there's a big scary cirrhosis thing bearing down on my decision. I've had the HCV for going on 33 years in another month, and if it hasn't raced into cirrhosis by now, it's not going to be doing it in another 6 mon I think.  Anyway, I think Harvoni is going to be a cure for many people. Susan400

[dointime]

Hi pacman,
Here's wishing SVR for you.  Thanks for keeping us posted,
dt  

[darbara]

Good luck KEEP IN TOUCH !!

[pacman1372]

Dear Darbara and Dointime , thank you for your valuable inputs .

Last tablet eaten about an hour ago and treatment is over ...
Shall get my eot viral load done tomorrow and then will follow up at eot + 4, eot + 12 and eot +24 .

hoping for the best and fingers are crossed .

Shall surely keep you all updated .

best wishes and warm regards .

[dointime]

Hi pacman,

My understanding is that there are no viral breakthroughs with Harvoni.  As I have previously had two with other meds, I have been following this subject carefully.  You don't get viral breakthroughs on Harvoni.

There have been cases where people on Harvoni tested not quite virus free on their EOT PCR and still got SVR.  Go figure.  But it has happened.  

I do follow your logic and understand your concern.  I agree that the V/L test at EOT is fairly useless.  Once you have become UND on Harvoni, you stay UND until EOT.  That is how it works.

Unfortunately there is no way for you to know if you have done enough at 12 weeks to get to SVR.  It would be very nice and easy if there were, but there isn't.  You just have to consider all the information available to you,  do what you think is enough, and then hope for the best.

I never met a person who did not get anxious towards the end of tx about whether or not it has worked.  That is very normal. Making up your tx plan is not as difficult as actually executing it.  I am not going to tell you not to worry and just go with the plan you started with.  I would recommend that you review your plan and how you decided on it and whether you still think it is the right plan for your case.  This process should either reassure you that it is right for you, or it may bring up rational doubts, in which case there is still time to extend your tx.  Many people do extend their tx so if you want to do it then you shouldn't view it as a big deal, so long as your body can tolerate the additional drugs.  There is really no data on whether extending tx makes much difference, unless you extend to make a total of 24 weeks.

Good luck whatever you choose to do,
dt  

[darbara]

Just do the V/L test EOT  then 4 weeks after EOT and finally 12 wks EOT

[darbara]

Here is a copy and of wait Lynn K wrote:

Yes on treatment testing means nothing relative to being cured.

However continued not detected 12 weeks post treatment (SVR12) is considered by the majority of the medical profession as evidence of viral eradication and thus cured. Some doctors prefer to hold to the old standard of SVR 24 but none the less as the virus if present multiplies at such a high rate if any viable virus were remaining below detectable levels (LLOQ) at EOT they will quickly replicate and be detectable. This is why the majority of relapse occur by week 4 post and that SVR4 correlates at 98.5% with SVR 12 and SVR12 is 99.8 % likely cured.

We had a couple of people here who were weakly detected at EOT but when tested at 4 and 12 weeks post they were not detected we are guessing they may of had some either virus pieces that were detected or some not viable dying virus that could not reproduce. But for whatever the reason they are now called cured by their doctors.

[darbara]

You have a 95 to 97 % chance to clear the virus so why panic. The medicine has worked for you till now.
Just do the V/L test EOT and then 12 weeks after EOT
How were your sides on this twinvir treatment ?? Are you feeling better ?

[pacman1372]

Good day to everyone and hope all are doing well .
One more question that came to mind today and i wanted to get your views here .

What is the use of of a vl test at week 12 !!
well let me re-phrase that for my current situation .

I am thinking the following , a week 12 vl test is probably to see if there has been a viral breakthrough while on tx , i am thinking of getting my vl test done one week earlier , ie beginning of week  12 , i would certainly finish my entire tx , BUT incase and god forbid there is a breakthrough i would have about 4-5 days to get a prescription from a Doc and get meds to continue for another 12 weeks maybe with riba if need be ...

Am i thinking right !!

If i get my vl done one day after eating my last tab of week 12 and see that there has been a vl breakthrough for some god forsaken reason i would be in a mess and it would take me a few days to get things sorted out in regard to getting more meds .

this way i could be prepared if i need to continue , as in there would not be a break in my tx .

i would certainly be getting a 4 week post eot also .

your views on the same would be appreciated .

thanking you in advance

Best wishes and god bless .

[darbara]

Good luck I am sure you will do well. I think its the right step.

[Dil310]

Hello dear Darbara & Pacman, thanx a lot for ur valuable suggestions . After consulting the other Hepatologist as well as keeping in view ur experience , I m going to start with Harvoni alone .  If need arises in future , Riba can be added.  No doubt, riba has its own side effects . Hope I fall in the 92% category.  .. Warm regards..  

[jassudabbu]

Now a days No gastroenterologist is prescribing Ribavirin with Sofosbuvir or Ladipasvir.
If the need arise,Daclatasvir is available in Indian Market.

[darbara]

ok keep in touch

[darbara]

Thanks m8. All the best. Waiting for your SVR news !

[pacman1372]

10 more days to go for tx to end :)
Have planned the following for blood tests ...

VL testing schedule planned is at 4 weeks and 12 weeks, and then EOT+4 and EOT+12.

[pacman1372]

& Eot + 24