Author Topic: Need to hear some post Harvoni good news PLEASE (Read 16538 times)

lolacme · « **on:** June 18, 2015, 01:54:24 pm »

Hey folks, I am taking my 6th dose of Harvoni today and I need my stinking thinking turned around. I have made the mistake of getting on here and reading about all of the Harvoni failures and relapses. Now its hard to focus on the positives. I really want to hear from some of you that have SVR 12. Who of you have succeeded at F3. F3'ers are you taking 12 or 24 weeks?

Mugwump · « **Reply #1 on:** June 18, 2015, 07:25:44 pm »

Quote from: lolacme on June 18, 2015, 01:54:24 pm

Hey folks, I am taking my 6th dose of Harvoni today and I need my stinking thinking turned around. I have made the mistake of getting on here and reading about all of the Harvoni failures and relapses. Now its hard to focus on the positives. I really want to hear from some of you that have SVR 12. Who of you have succeeded at F3. F3'ers are you taking 12 or 24 weeks?

Within a few days you should start experiencing what I call the Harvoni high. It seems as your liver is freed of the virus other things happen to those of us with moderate to severe liver damage.
For me it was a sudden feeling of strength and an easing of the sense of being sick all the time but only just a little. Many have associated the continuous feeling of being sick with HCV as a similar feeling to having a hangover that won't go away. You know the flu that makes you call in and skip a day at work, that case of the flu that just hangs on and on. And that is the nature of a compromised liver you feel sick all the time and just get used to the feeling.

It can come as a shock feeling like a happy healthy human again! And this is what you are about to experience. As you liver alt and ast normalize it is amazing the boost of energy you feel. But a word of caution is due here, yes take advantage of the new you but be careful not to over do it like I did!

Try your best to do things that you would otherwise be loth to do, like hiking, walking, talking to someone you have not spoken to in years. It is not a good thing at all to sit and worry. The treatment process is exactly that a process and the more that you keep active and forget that you ever had HCV the happier you will be.

Remember the advice here to drink lots of water. Time will pass more quickly and you will find the process a breeze if you treat yourself to freedom from worry instead of worrying about the drug or how others are doing. Certainly encourage others but give yourself a good raw raw voom voom session first and foremost!

You will breeze through this and in doing so find a new sense of life that we all have desperately been seeking. The flowers may not smell sweet for you quite yet but they will!

Cheers
Eric

Lynn K · « **Reply #2 on:** June 18, 2015, 07:39:59 pm »

Hi
I am genotype 1a with F4 cirrhosis treated 3 times with interferon based treatment and was a null responder and last year for 12 weeks with sovaldi and olysio and relapsed

I can't report 12 week post yet I only finished treatment on May 4th but after treating for 24 weeks of Harvoni and 15 weeks of ribavirin my 4 week post treatment result was not detected so looking good so far that I wave finally cured hep c after being infected for 37 years

Are you treatment naive and do you have cirrhosis?

The treatment is 12 weeks unless you have cirrhosis F4 so unless their doctors are going off label unless you have cirrhosis the treatment should be 12 weeks the only ones who are supposed to be prescribed 24 weeks id treatment experienced with cirrhosis per the prescribing information sheet

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

lolacme · « **Reply #3 on:** June 19, 2015, 08:50:29 am »

Thanks Mungwump for the encouragement. Lynn K I think what is worrying me the most is the stage of my fibrosis in relation to the length of my treatment. In Dec. 2012 I had a biopsy that showed F3 grade 2 liver disease. I think I could easily be F4 by now but another liver biopsy was not done prior to treatment. I was prescribed 12 weeks of Harvoni when there is a good chance that I may need it for 24. I plan to talk to my doctor about it to see if there is anyway we can stage my liver again while I am already on treatment. I have express scripts so it would be a miracle to get Harvoni okayed for another 12 weeks but I feel like I have to try. He told me at last visit that he did not need to do another biopsy because fibrosis is slow and he does not think I am cirrhotic yet but I have seen on here where others have progressed over 3 years. I am not sure I have access to a fibroscan with him as I am from small town America but I do hope he will consider sending me somewhere else maybe in time to have treatment extended if need be. I think I am like many and I just want some guarentee this treatment is going to work. I am so sad inside. Even after all this time I still can't forgive myself for what I have done to cause this.

Oh yeah had interferon based tx times 2 stopping after about 7 weeks each time related to severe side effects.

sabre · « **Reply #4 on:** June 20, 2015, 12:09:17 am »

First, don't beat yourself up over the past. There's nothing you can do about it now so why go down a path of self destructive thoughts? Try and think of the positives in your life and focus on them to give you the strength to beat this disease.

Second, I know it's easy to be intimidated by doctors and to become afraid to question their judgement, but you've got every right to ask for another biopsy, or better yet, an ultrasound. You say you live in small town America, but surely there must be somewhere not too far away that has the equipment to test your liver's current health.

You're your own best advocate and maybe you should research hospitals that have the proper equipment and present that information to your doctor and ask for him to approve the test.

Sincerely hope you can get some peace of mind.

lolacme · « **Reply #5 on:** June 20, 2015, 09:50:48 am »

Sabre,
I have decided I am going to ask my doctor for a tests to check my liver when I go back at 4 weeks. I am sure he can send me somewhere for the test if its not available at our hospital. It would give me peace of mind and it would also give time to get the Harvoni extended if need be. I noticed yesterday was your last dose. Congrats.

sabre · « **Reply #6 on:** June 20, 2015, 06:43:38 pm »

lolacme,

I'm glad that you're going to ask your doctor to test you again. Chances are, you'll not have advanced much in that time period, but in the outside chance that you have, you should be able to get approval for 24 weeks.

Thanks for the well wishes. I stared at that last pill for an hour thinking it deserved some sort of grandiose farewell before going into my system. Took a picture of it on my end date on a calendar and down it went.

Best wishes to you with your treatment.

atomic dog · « **Reply #7 on:** June 21, 2015, 12:43:31 am »

I'm alive. Four weeks post treatment still undetected.

lolacme · « **Reply #8 on:** June 23, 2015, 05:14:06 pm »

Hello everyone,
I went to my MD today. After fasting tonite I am going in for a Fibrosure blood draw. Does anyone know how accurate fibrosure test are? I see mixed results. We also decided to add ribaviran to the remainder of my treatment which I dread but also feel good about bc I would do anything to increase my chances of SVR. And...even though its been less than 2 weeks since I started the Harvoni he is going ahead and checking a VL as well. Finally I am getting some relief from my lingering fears. I know that if I turn out to be an F4 I will have done the right thing in requesting the ribaviran be added. Feeling motivated to win.

pjggibson · « **Reply #9 on:** July 15, 2015, 07:01:26 am »

LoLacme, I have been infected 35 years and have two Dr. in Cincinnati,Oh, I am cirrhotic with no complications. I too asked my Dr about 12 versus 24 weeks,I am in my 7th week of 12 and feel just fine. The doc says no evidence that 24 weeks is more effective than 12 in those with or without cirrhosis being treated. Two key factors are 1. failing treatment in the past and along with viral load > than 6 mil. My Dr did prescribe 12 weeks instead of 8. cirrhotics tend take longer but have good response with 12 weeks if never treated before and have vl of <6 mil, I am 1b,starting vl of 5 ml at 4 weeks vl was 33,doc expects to be undetected at 8. Insurance not likely to extend f you do not meet prescribed guidelines. Gilead will send you info once you start Harvoni read it,it may ease your mind a little. You'll be fine.

Peace and Good Health

PJG

dragonslayer · « **Reply #10 on:** July 15, 2015, 09:24:40 am »

Ok, local... Want some good Harvoni news? Im the poster boy for it. Went through 8 wks of treatment with maybe a few headaches that Ibuprofen demolished. Nothing else.. It was a cakewalk.

But at EOT, I tested Detected 29. I thought I had failed, not realizing that Harvoni doesnt work the way older treatments did.. Back then, you were detected? You failed.. So, when I went back for a 7.5 wk post treatment test, shock of shocks, my viral load had gone from Detected 29 at EOT to Detected but less than the Lower Level of Quantification (LLOQ) 12. That decrease in viral load was certainly a great sign... And sure enough, at 11 wks post treatment, I finally tested Undetected.. And last week, I went for my SVR24 check and once again, Undetected.. So Im cured.. It was a long strange trip, but at the end of the day, this was a great treatment for me with nothing but good results.. IT Worked!!! What more is there to say

lolacme · « **Reply #11 on:** July 15, 2015, 09:41:02 am »

Thanks for the responses. dragonslayer I have been watching you in the forum. thank you for staying active post treatment.

Terry1947 · « **Reply #12 on:** July 20, 2015, 02:58:32 pm »

Dragonslayer...
Wow !!! Paul...so happy with your 24 week post test results. You beat the Dragon!!
Congrads, Terry.
Terry1947

grodeestok · « **Reply #13 on:** July 20, 2015, 10:35:26 pm »

Kick some butt dragonslayer!

Lynn K · « **Reply #14 on:** July 21, 2015, 02:25:02 am »

Awesome news Paul! SVR 24 woo whooooo!!

Truly living up to your name Dragon Slayer!!

Lynn

mikeyman · « **Reply #15 on:** July 28, 2015, 09:19:07 am »

Just got a message from my liver doctor at OSU. Three months after completing 6 months of Harvoni treatment, I am cured of hepc! The virus is still undectable! It's GONE from my body! Praise God! Happy tears!

sabre · « **Reply #16 on:** July 28, 2015, 02:10:07 pm »

Congratulations, mikey! That's awesome news.

sugarfree · « **Reply #17 on:** July 28, 2015, 02:56:51 pm »

I have been diagnosed 8 years ago, after being very sick. I tried the triple treatment and could only get thru 4 months before they pulled me. That nearly killed me my body was shutting down and in my head I felt like a failure. Depression hit me hard. Finally Harvoni came around. I have approved Dec 23 and a carrier delivered it to my home. I started after the holiday on Jan 5. Within 4 weeks I was undetected. I finished treatment Easter Sunday,April 5. The Dr said I won't get worse now but you don't get much better. I feel so clear headed, I'm still real tired but I'm still ND!! Come October the Dr says I can use the C word....CURED!! Good luck too all.

sickpuppy · « **Reply #18 on:** July 28, 2015, 03:34:03 pm »

In my book, being alive > feeling good. So, at least there's that, right?

I'd rather be alive and fatigued than being dead from liver cancer.

WmAllen · « **Reply #19 on:** July 28, 2015, 03:36:52 pm »

I had EOT in mid June,,, was clear then and I know I am still clear. No Tests since EOT, that is a in few more months. I know by how I feel. I had cleared on Interferon/Ribaviran for a month and I could tell... and then I could tell when I relapsed.
I feel great and I don't plan on looking back. I just wish my other physical disabilities wouldn't hold me back from all I want to do.

Live Long and Prosper

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Author Topic: Need to hear some post Harvoni good news PLEASE (Read 16538 times)