Author Topic: Harvoni Side effects (Read 2190238 times)

Doluska · « **Reply #100 on:** November 17, 2014, 10:38:28 am »

Hi Mario! I am Canadien too. But I am on s/o plus RIBA. Don't know yet how long it will be, cose my MD told me it depends on blood work results. For me it was a real battle to get my pills, and I even didn't hope to get Harvony. Doktor told me : if you ready to weit half a year go ahead, but my enzymes were very hi, so I started my current treatment. I wanted to ask you: why your hope is only 15 years of life in case of successful treatment? I 've never heard about those numbers. Anyway, I wish you good luck and much more years ahead, than 15. D

mario555 · « **Reply #101 on:** November 17, 2014, 11:10:56 am »

You want to know how I estimate a 15 year additional life: This is where I took the ''15 additional years'': I'm an accountant so, I like to do estimates, count and evaluate possibilities, etc... At the rate my liver was getting worse (2000 I was f2, 2010 was f3, 2014 was/is f4) and I'm 59 so I ''estimated'' I'd be in compensated cirrhosis stage by age 66 and after that it is a slippery slope toward major health effects (my main concern was a backflow from my vena cava, a large vein under your liver). I estimated I'd be dead (or wanting to be) before age 69. So, if I get 'cured', I'd most probably have a more 'normal' death at the average age of 82-83 years old.
I needed to get started on an effective treatment because after all those years of living with Hep C, I was starting to have negative thoughts and poor behaviours. I was becoming 'mad' at myself and the disease! I couldn't take it anymore! I wanted the virus out of my body!
I started following Gilead the maker of Harvoni 2 years ago right after they purchased the company who had invented the first part of the pill now used (Sovaldi). Gilead paid $12 billions for that company so it got my attention! I followed the 3 phases for the trial and followed everything I could find about Hep C. People bitch about the high cost of the medication but, $12 billions was a hell of a big price to pay for an investigational pill. As I explained to my wife; you don't have to pay $900/day for the pill, you can try inventing one! Gilead has one which they paid dearly for. If the pill makers don't get rewarded, they'll stop inventing new pills and I'll suffer. So, I accept to pay whatever the cost because the alternative is

?
Finally, enzymes are a poor predictor of your disease level. I was lucky enough to use a new machine that can 'read' the state of your liver in 2 minutes! I tried it at 2 different occasions and both readings were really close so, the machine works! This reading will tell you how bad your liver is.
The pill got accepted in Canada at the end of October. My insurance had no specific restriction on which type of pills I take but had that maximum $50K per year. I'm just lucky the dates worked out the way they did but, I prefer to have a new mortgage on the house and bitch about paying it rather than being buried with a mortgage free home! (although my wife might not be as keen as me....)

cici3030 · « **Reply #102 on:** November 17, 2014, 11:55:27 am »

Hi all, I'm new here. Day 6 on Harvoni. F0-F1 which is confusing because my blood work and cat scan showed F3, but biopsy says F0-F1. Diagnosed last year but suspect I have had it for about 10yrs. Genotype 1a. I'm not sure what my viral load is, a letter from the doctors office just said low viral load. I have been reading the posts which have been helpful. The side affects that I am having are fatigue, muscle aches that just started yesterday, waking 2-3 times at night and the worst is the headaches. The headaches started the 2nd day and have not stopped since. They are very intense and nothing seems to help. I have tried everything it seems. Let me just say that I have always had headaches but never this intense and for this long. My husband went and bought me some peppermint oil and a gel eye mask(cold) . This actual helped a little bit but I cant use them while working. I have also noticed my blood pressure is high since starting the meds. I'm really hoping that the headaches go away or at least get better during treatment. I haven't talked to the doctor about it because I don't think there is much he can do about it. Otc meds don't do any good so I stopped taking them. I'm praying that these symptoms get better and for all of you with your treatments.

Anand · « **Reply #103 on:** November 17, 2014, 12:10:14 pm »

Hi everybody,

I just completed 5 days of 12 weeks of Harvoni treatment. So far I have not had any side effects. I had a BOT -1day (Beginning of treatment) blood work, the so called base line numbers that includes VL, Hbg, and Platelets. I am due for a blood work for BOT+7days. If not on Friday, then by Monday (11/24/14), I hope to get the BOT+7d numbers. I will then write my Hep C bio and the results in my next blog. Thanks, inhaste, Anand.

magicpill · « **Reply #104 on:** November 17, 2014, 12:20:44 pm »

Art are you drinking plenty of water and eating good

penny · « **Reply #105 on:** November 17, 2014, 01:52:09 pm »

Art
A guy on another board said he always has normal bp 120 but since harvoni it is 150.

art1951 · « **Reply #106 on:** November 17, 2014, 02:58:27 pm »

Quote from: cici3030 on November 17, 2014, 11:55:27 am

Hi all, I'm new here. Day 6 on Harvoni. F0-F1 which is confusing because my blood work and cat scan showed F3, but biopsy says F0-F1. Diagnosed last year but suspect I have had it for about 10yrs. Genotype 1a. I'm not sure what my viral load is, a letter from the doctors office just said low viral load. I have been reading the posts which have been helpful. The side affects that I am having are fatigue, muscle aches that just started yesterday, waking 2-3 times at night and the worst is the headaches. The headaches started the 2nd day and have not stopped since. They are very intense and nothing seems to help. I have tried everything it seems. Let me just say that I have always had headaches but never this intense and for this long. My husband went and bought me some peppermint oil and a gel eye mask(cold) . This actual helped a little bit but I cant use them while working. I have also noticed my blood pressure is high since starting the meds. I'm really hoping that the headaches go away or at least get better during treatment. I haven't talked to the doctor about it because I don't think there is much he can do about it. Otc meds don't do any good so I stopped taking them. I'm praying that these symptoms get better and for all of you with your treatments.

I take 1000 mg of extra strength Tylenol twice a day and can usually manage the headaches. I just take the first dose as soon as I am awake. I did have to take Excedrin migraine one day.

gool luck,
-Art

art1951 · « **Reply #107 on:** November 17, 2014, 02:59:53 pm »

Quote from: magicpill on November 17, 2014, 12:20:44 pm

Art are you drinking plenty of water and eating good

I am drinking about 64 oz of water and watching what I eat.

Thanks,
-Art

Doluska · « **Reply #108 on:** November 17, 2014, 03:04:15 pm »

Hi Mario! I was planning to take mortgage for the treatment too, but Olysio gave me pills as a compattionate case, and Sovaldi was paid by my insurience. I agree with You, that to get rid from the virus worth any possible try. About 15 years... I strongly believe that not us decide when, our numbers written up there, and we just can help ourselves by doing what we can. It helps, but decision is not ours. I wish you many healthy years ahead. And you will have it. Don't think that I am very religious, and naive person. I am a nurse, with long years of practice in 3 country's , including Canada, and I saw many miracles and many failures. Who are really successive in treatment ? Optimists! Good luck with Harvoni! D

penny · « **Reply #109 on:** November 17, 2014, 03:41:46 pm »

CiCi and Art
Was your BP normal before?Are you on BP meds?

Hi Anand
Thanks for the update. So happy for you.

cici3030 · « **Reply #110 on:** November 17, 2014, 04:11:20 pm »

Penny
My blood pressure was high before starting Harvoni but under control. Now since starting the medicine, its on the high side again. I'm on a baby dose of Lisinopril 20mg. But may need to increase, will see what the doctor says.

-CiCi

fllazylady · « **Reply #111 on:** November 17, 2014, 04:16:12 pm »

I have really been pondering on why I'm not having side effects like people are listing here, in hopes that I can find a way to have everyone feel the way I feel through the journey to our cure..my daily practice I meditate in the morning I meditate in the afternoon I try to stay calm as I can so that my body can heal. I don't really have to deal with going to work or taking care of children. I'm just trying to find a common thread to try to make this journey to our cure a good one for all. I don't believe that we have to suffer to get there..we have suffered enough..I have listed a Healing meditation so grab your headphones and let your body heal...http://m.youtube.com/watch?v=rEXa_3ELy_o
Sending you all Light n Love
Paulette

mario555 · « **Reply #112 on:** November 20, 2014, 09:20:07 am »

It is really encouraging to hear from people that now have many weeks of Harvoni treatments under their belts. What comes out generally from the posts is that the treatment is well tolerated by most.
My situation is F4 genotype 1a with a heavy viral load and 2 unsuccessful tries with Peg+RBV.
I only have one week of experience with Harvoni and the side effects are minimal. What did happen during these last 7 days are that I have an appetite that is surprising! From the second day on, I eat like a starved person. I also have more energy for little spurts during the day. I still get tired easy but I'm more willing to undertake activities than before. After 2-3 days, I felt some kind of pressure release around my liver like if it would have disgorged itself. I also have pinching 2-3 times a day.
It is nice to see that based on other people's experience, I should continue having little side effects.
Something to note: I never had high blood pressure in my life. I usually get 120/80. After 7 days, I now have readings of 142/98 which is still low on the scale but way off for me. I would suggest that people who had borderline high pressure to keep an eye on this reading. I'll be taking care of my salt intake and I'll make sure I go for walks more often.
Other than that, good luck to all. This is the best medicine to date. 23 more weeks to go!

Anand · « **Reply #113 on:** November 20, 2014, 11:28:36 am »

Hi Penny,

thanks for your interest and concern. I appreciate that. Now I have a question. You are asking a lot questions. Are you a patient with Hep C? or are writing a book? Thanks. Anand

Anand · « **Reply #114 on:** November 20, 2014, 12:14:13 pm »

Hi Penny,

If you do write a book you only add to the knowledge base and it is a good thing. I omitted to include in previous post. Thanks. Anand

JillLynn · « **Reply #115 on:** November 24, 2014, 10:11:57 pm »

I'm feeling very fatigued the last 2 days on harvoni. i'm into my 6th week AND can not sleep on this stuff for some reason. I'm up and down all night and I'm sure that doesn't help with the fatigue and brain fog. I feel like I have a fever but when I check I don't. Sleep would sure help. But all in all....this is not so bad at all. Next Monday is my 2nd viral load test. My dr. added in another one instead of waiting for week 12 because we were expecting "undetectable" at week 4 and it didn't happen. But oh so close!

Jill

Thank you for all the shares y'all.

Lynn K · « **Reply #116 on:** November 24, 2014, 10:33:06 pm »

Quote from: art1951 on November 17, 2014, 02:58:27 pm

I take 1000 mg of extra strength Tylenol twice a day and can usually manage the headaches. I just take the first dose as soon as I am awake. I did have to take Excedrin migraine one day.

gool luck,
-Art

Hi Art
You should have a look at this about tylenol

http://www.fda.gov/Drugs/DrugSafety/ucm239821.htm

FDA Drug Safety Communication: Prescription Acetaminophen Products to be Limited to 325 mg Per Dosage Unit; Boxed Warning Will Highlight Potential for Severe Liver Failure

and

http://www.cnn.com/2014/01/15/health/fda-acetaminophen-dosage/

The FDA has set the recommended maximum for adults at 4,000 milligrams per day. It's easier to reach this limit than you might think; one gel tablet of Extra Strength Tylenol, for example, contains 500 mg.

Just an FYI to all yuo tylenol takers out there to be careful especially if you have liver damage

Best to all
Lynn

mario555 · « **Reply #117 on:** November 25, 2014, 08:08:21 am »

I'm only on my second week with Harvoni and I can't sleep!!! I tried taking the pill at 9 pm before going to bed and I get a kind of ''heat puff'' up to 2-4 hours after taking the medication. I can't fall asleep while ''puffing''. I then tried to take the medication earlier (6 pm) and now I just can't sleep!
Anyone of you who encountered this side effect at the beginning of treatment? Does it go down in intensity or does it increases?
I haven't experienced 'brain fog' or tiredness (after 2 weeks) but I'm just buzzed out and can't seem to have a full night of respite. PLease give me your tricks if you have any because I'm on a 24 weeks treatment and I don't really want to wait 22 more weeks to sleep!

JillLynn · « **Reply #118 on:** November 25, 2014, 09:30:33 am »

I'm with ya Mario. i can not sleep on this harvoni. I'm going to be watching to see what others are doing to sleep. Hopefully we can get a solution. I don't like ambien, and the other things they use for sleep like tranzadone or sinequan .....so I'm just dealing right now but some tips on what else might do the trick would be greatly appreciated! melatonin doesn't work either for me, have tried it several times.

art1951 · « **Reply #119 on:** November 25, 2014, 11:47:44 am »

Quote from: Lynn K on November 24, 2014, 10:33:06 pm

Hi Art
You should have a look at this about tylenol

http://www.fda.gov/Drugs/DrugSafety/ucm239821.htm

FDA Drug Safety Communication: Prescription Acetaminophen Products to be Limited to 325 mg Per Dosage Unit; Boxed Warning Will Highlight Potential for Severe Liver Failure

and

http://www.cnn.com/2014/01/15/health/fda-acetaminophen-dosage/

The FDA has set the recommended maximum for adults at 4,000 milligrams per day. It's easier to reach this limit than you might think; one gel tablet of Extra Strength Tylenol, for example, contains 500 mg.

Just an FYI to all yuo tylenol takers out there to be careful especially if you have liver damage

Best to all
Lynn

Lynn,
I have been aware of the issues with Tylenol and was surprised when my doctor recommended it. I have since gone to my primary care physician and determined that the headaches were due to elevated blood pressure. The blood pressure is now under control and the headaches have gone away. We are going to adjust/remove the blood pressure medication after I am off the Harvoni.

Thanks,
Art

cici3030 · « **Reply #120 on:** November 25, 2014, 12:36:39 pm »

Hi all, on Day 14 on the Harvoni. I was suffering from very bad headaches for a while, and blood pressure was high. But the last couple of days have been very good. Very little headaches and blood pressure is within the normal range. I have not had trouble going to sleep but do wake up 2-3 times at night, can usually go back to sleep pretty easily so far. It does seem like the longer I take the meds the more difficulty I have with waking up during the night. I take the meds at 8pm. I am so thankful to get relieve from those headaches that I can handle some lost sleep. I have noticed getting brain fog periodically but doesn't last that long. Good luck to the rest of you.

art1951 · « **Reply #121 on:** November 25, 2014, 01:43:05 pm »

I typically get 5 hrs of sleep but my pcp has asked me to up it to 8 hrs. He also prescribed .25 mg of Clonazepam to relieve the stress or anxiety and help me get to sleep. It is working well so far. I am under quite a bit of stress at work and head up an engineering organization.

-Art

Rubye · « **Reply #122 on:** November 25, 2014, 02:25:45 pm »

Art, I have found that the quality of sleep I get means everything on these drugs (S/O for me). I think Harvoni and S/O are quite similar and I am now going into week 9 and feeling pretty normal now with no sides. I did have the BP problem and a lot of other stuff that almost made me quit. However, all my labs are those of a normal person, except for platelets, and I am undetected with only 3 more weeks to go.

So, hang in there. I used to read that the times passes so fast. Well, when you're in the midst of being uncomfortable it doesn't seem to but looking back I can seriously hardly believe I have come this far. You have a mentally demanding job being an engineer so get that sleep.

fllazylady · « **Reply #123 on:** November 25, 2014, 07:55:20 pm »

Seems like a lot of people here have a sleep issues why don't you all switch dose to a.m. after breakfast. I dose at 10AM after breakfast. I have had no side effects and feel great energy during the day and I sleep wonderful at night just change the dose time..hope you get better sleep. It's very important to get rest when you have Hep..
The only thing I have noticed is my appetite is huge..LOL

Send you all Big Hugs

JoeK9999 · « **Reply #124 on:** November 26, 2014, 12:46:57 pm »

Just for everbody's info:

My Hep doctor told me that the HVC RNA Quantitative (viral load test) is not as accurate as the HCV RNA Qualitative test. A viral load test that comes back as <15 UND, could really be a POSITIVE HCV RNA Qualitative test. He says any test with undetected as a result is meaningless. You want to see
Negative or Positive only for a determination.

I know everyone sees all the viral load tests coming back as undetectable after 3-4 weeks, but if you get a the Qualitative test back as positive don't get upset.

magicpill · « **Reply #125 on:** November 26, 2014, 01:10:11 pm »

Good information,i am waiting on results 1st blood test on 30 day on harvoni.I am noe 33 days into treatment

JoeK9999 · « **Reply #126 on:** November 26, 2014, 01:44:04 pm »

Magic,
My Hep doc didn't want to take any HVC RNA tests until 24 weeks after done with treatment. I did get a cbc and a liver panel after 10 days and all was normal including a big drop in ALT and AST. He didn't seem concerned about testing. He basically said take all the meds for 8 weeks and I should be cured. I am on the 8 week plan as I have never been treated, no cirrhosis and my prior viral load was under 6 million.

I had a scheduled appointment after 27 days of Harvoni and practically had to beg him for a viral load test. He ordered the Qualitative test instead and I got a positive back today (not happy) especially since he said he already knew I would show negative. Anyway I am on day 34 about the same into it as you. Let me now how your test comes out.

Rubye · « **Reply #127 on:** November 26, 2014, 02:47:19 pm »

My doctor orders the quanitative test because my hospital uses the newer Abbott test --

"Some newer viral load tests can detect very low amounts of viral RNA, and some laboratories no longer do qualitative HCV RNA tests if they use one of these versions of viral load testing." http://www.hivandhepatitis.com/hep_c/hepc_test.html

The NP who gave me my prescription didn't want to order any viral loads during tx so I returned to my original gastro who orders the viral loads for me. I had one at 4 weeks, then at 8 weeks and will have new ones at one week EOT and 12 weeks EOT. I think I would go crazy not knowing even though I understand being undetected during treatment is essentially meaningless and it's the EOT 12 that counts. Still...

JoeK9999 · « **Reply #128 on:** November 26, 2014, 04:01:41 pm »

Rubye,
Thanks for the info and link. It still seems like the quantitative is definitive test
which says either positive or negative. When I have had the viral load test and most people who get one 15 is usually the low end. I would have liked to have known
if my viral load was near or under 15 rather than a positive or negative.
My doc without wanting tests says 8 weeks for me and check for an SRV in 6 months.

JoeK9999 · « **Reply #129 on:** November 26, 2014, 04:02:52 pm »

I meant "qualitative" is a definitive test.

Rubye · « **Reply #130 on:** November 26, 2014, 04:16:19 pm »

This concerns me because it makes me worry if my doctor is doing the right test, but then I have to think he knows what is best because he on the cutting edge of Hep C treatment as a hepatologist in a transplant center.

My two VL's while on treatment have been quanitative. The first one at 4 weeks said I was <12 with a weak positive and it also said I was undetected. This last test, which was also quanitative, said nothing but that I was undetected. Same lab. Same test. Different results.

Maybe qualitative is best for saying simply whether or not a person has the virus vs the quanitative which says more precisely what a person's viral load is.

Bucky · « **Reply #131 on:** November 26, 2014, 04:17:38 pm »

This is what mine looked like on 9/18/14 EOT. Qualitative is not mentioned. I see an IDS at a major teaching hospital so I would say this is the most current test method. I could be wrong though.
Component Results
Component   Standard Range   Your Value
HCV, RNA QUANTITATIVE       TARGET NOT DETECTED
HCV RNA ULTRALOG       TARGET NOT DETECTED
HCV RNA COMMENT       REFERENCE RANGE: TARGET NOT DETECTED
Results determined using the COBAS Ampliprep Taqman real time PCR. The reportable linear range of this assay is 43 to 6.9E+0.7. This test is intended for use as an aid in the management of HCV-infected individuals undergoing anti-viral therapy.
Bucky

JoeK9999 · « **Reply #132 on:** November 26, 2014, 06:18:29 pm »

I wouldn't worry about the tests your doctor is doing. I'm sure all the tests today are fine. I have to get all mine done through Labcorp.
I think you're right about the preciseness of the viral load. I guess my doc doesn't careand just wants to see if it's still there or not. But then again he didn't even want to see any tests until 6 months EOT. It's his belief, if you take the pill everyday and don't abuse body, you will be cured from Harvoni. Based on all the results it looks like you get to undetected at some point within a few months and stay that way and a small percentage don't stay that way. I never read anything about the people who didn't respond. For all we know, they didn't take all their meds and went out drinking and drugging. Thinking back to my younger days, I wouldn't have paid much attention to it and gone on my merry way. It would be interesting to hear from the people who failed from Harvoni. It's a crap shoot.
Here's an interesting fact sheet I came across.
http://hcvadvocate.org/hepatitis/factsheets_pdf/Phase_3_Genotype_1_SOF-LDV.pdf

Rubye · « **Reply #133 on:** November 26, 2014, 06:33:17 pm »

I hope that's true of the Sovaldi/Olysio also. Gilead has called me a couple of times as a reminder to pick up my new script and I've thought how the heck could anyone possibly forget. Unless they have HE. I suppose I'm rather naive about the possibility of someone drinking or doing drugs while on tx, but perhaps that is indeed why some people fail tx. To me it is such a gift to be able to have these drugs that I simply don't get being irresponsible with them. I don't normally talk this way but for this I am a bit sanctimonious.

goodbyehepc · « **Reply #134 on:** November 26, 2014, 06:34:50 pm »

Quote from: JillLynn on November 24, 2014, 10:11:57 pm

I'm feeling very fatigued the last 2 days on harvoni. i'm into my 6th week AND can not sleep on this stuff for some reason. I'm up and down all night and I'm sure that doesn't help with the fatigue and brain fog. I feel like I have a fever but when I check I don't. Sleep would sure help. But all in all....this is not so bad at all. Next Monday is my 2nd viral load test. My dr. added in another one instead of waiting for week 12 because we were expecting "undetectable" at week 4 and it didn't happen. But oh so close!

Jill

Thank you for all the shares y'all.

Hi Jill
I am almost done with week 4 on Harvoni and I got a bit fatigued the last week. Brain fog has increased and I have had trouble sleeping too. I also have night sweats that wake me around 3:30 in the morning. I have bursts of energy )mostly the first two weeks. I should get myfirst test results back next week since bening treatment.

all the best
GHC

Lynn K · « **Reply #135 on:** November 26, 2014, 08:22:45 pm »

Hi JoeK999

In defense of us Sovaldi Olysio relapsers the not so happy few that we are...
I would like to point out that as a 3 time nul responder to previous interferon based treatment diagnosed with cirrhosis in 2008 GT 1a.

I am neither a drinker or a drugger and I did not miss a dose of Sov/Oly on my 12 weeks treatment. Some of us are just very difficult to cure especially those of us with cirrhosis.

I just hope that 24 weeks of Harvoni will get it done this time.

Cheers
Lynn

Rubye · « **Reply #136 on:** November 26, 2014, 08:41:29 pm »

I hope the Harvoni works for you Lynn. Perhaps it is as simple as needing more time. I know I worry about not making it on the s/o because I have cirrhosis and only have 12 weeks.
Good luck to you.

Lynn K · « **Reply #137 on:** November 26, 2014, 09:58:00 pm »

Hi Rubye

I recently saw the FDA has approved Sovaldi Olysio as a combo treatment and that "the FDA recommends 12 weeks of Olysio-Sovaldi for people without cirrhosis and 24 weeks of the combination therapy for those with cirrhosis."

http://www.aidsmeds.com/articles/Olysio_Sovaldi_approval_1667_26373.shtml

http://www.prnewswire.com/news-releases/olysio-simeprevir-gains-additional-fda-approval-as-once-daily-all-oral-interferon--and-ribavirin-free-treatment-option-in-combination-with-sofosbuvir-for-adults-with-genotype-1-chronic-hepatitis-c-infection-281674661.html

https://www.olysio.com/shared/product/olysio/prescribing-information.pdf

Maybe you could ask your doctor about extending your treatment duration to 24 weeks. I believe had I been able to do 24 weeks I would have made SVR but of course I will never know for sure.

Rubye · « **Reply #138 on:** November 26, 2014, 10:17:16 pm »

Thanks Lynn. However, I already asked and they said my insurance won't pay. That's what they told me since January but they finally broke down and gave me the 12 week script. Then I had to go in circles with the doctor to get him to do an appeal letter. It's Oregon politics around people with Extra Help. They've made statements like no one with Medicaid will get Sovaldi in the Willamette Valley. So, I feel lucky to have gotten the 12 weeks. Plus, I really don't have the energy for another fight. It's not the insurance for me but rather the doctors.

But, thank you.

Lynn K · « **Reply #139 on:** November 26, 2014, 10:21:17 pm »

Yeah can relate to fighting with insurance so good luck I hope you don't have to be back fighting them again later for Harvoni I have read the odds for people with cirrhosis on 12 weeks Sov/Oly are about 86% for our cohort in clinical trials hope you fall on the good side of the odds

Best to you and yours
Lynn

Rubye · « **Reply #140 on:** November 26, 2014, 10:30:53 pm »

86% is not too shabby. We shall see.
Another reason I don't want to fight for another 12 weeks is that I've had a very hard time the last 8 weeks. If I should fail with the S/O I want to go with Abbvie but maybe wait a few months to see how others do.

Have you already started the Harvoni Lynn?

Lynn K · « **Reply #141 on:** November 27, 2014, 12:05:27 am »

Yes day 9 down 159 days to go. So far just tired maybe a bit more than usual

That's about it

Happy Turkey day to all
Lynn

Ralph · « **Reply #142 on:** November 28, 2014, 04:46:12 pm »

Started HARVONI 10 days ago on an 8 week program. Treatment naïve, viral load 3.9m, normal enzyme levels, stage 3 level 3. I take my pill each morning about 7am without food and then eat within the next hour. I'm continuing to take most all supplements such as multi-vitamins, heart health and prostate health supplements.
I am waiting to experience my first noticeable side effect. So far everything about this new drug seems to good to be true. I hope it isn't. Feeling thankful that the timing of this new treatment lined up for me.
I like to have a beer now and then, but haven't. Can anyone tell me that would be ok while on this therapy?

goodbyehepc · « **Reply #143 on:** November 28, 2014, 05:24:25 pm »

Quote from: Ralph on November 28, 2014, 04:46:12 pm

Started HARVONI 10 days ago on an 8 week program. Treatment naïve, viral load 3.9m, normal enzyme levels, stage 3 level 3. I take my pill each morning about 7am without food and then eat within the next hour. I'm continuing to take most all supplements such as multi-vitamins, heart health and prostate health supplements.
I am waiting to experience my first noticeable side effect. So far everything about this new drug seems to good to be true. I hope it isn't. Feeling thankful that the timing of this new treatment lined up for me.
I like to have a beer now and then, but haven't. Can anyone tell me that would be ok while on this therapy?

May I ask how they determined stage 3 level 3?

goodbyehepc · « **Reply #144 on:** November 28, 2014, 05:25:11 pm »

Quote from: Ralph on November 28, 2014, 04:46:12 pm

Started HARVONI 10 days ago on an 8 week program. Treatment naïve, viral load 3.9m, normal enzyme levels, stage 3 level 3. I take my pill each morning about 7am without food and then eat within the next hour. I'm continuing to take most all supplements such as multi-vitamins, heart health and prostate health supplements.
I am waiting to experience my first noticeable side effect. So far everything about this new drug seems to good to be true. I hope it isn't. Feeling thankful that the timing of this new treatment lined up for me.
I like to have a beer now and then, but haven't. Can anyone tell me that would be ok while on this therapy?

In general liver disease and any kind of alcohol are not a good mix. Maybe you might want to go through the process of treatment, then give your liver a chance to regenerate and heal?

Ralph · « **Reply #145 on:** November 28, 2014, 06:40:25 pm »

Stage and level were determined with a biopsy take during a surgery 2 years ago. My enzyme levels have most always been normal which contradicts the biopsy findings.
I'm just craving a beer, not indulging. I am looking forward to cracking one open in a few months though!

goodbyehepc · « **Reply #146 on:** November 28, 2014, 06:47:55 pm »

Quote from: Ralph on November 28, 2014, 06:40:25 pm

Stage and level were determined with a biopsy take during a surgery 2 years ago. My enzyme levels have most always been normal which contradicts the biopsy findings.
I'm just craving a beer, not indulging. I am looking forward to cracking one open in a few months though!

Yea I it does seem strange to have normal enzyme levels at that stage. Well good luck with it all.

Lynn K · « **Reply #147 on:** November 28, 2014, 09:34:32 pm »

Hi Ralph

ALT and AST levels can be low or even normal. But the duration of years of your liver being under constant attack from hep c is why you are now F3 which is just one stage of liver damage below cirrhosis. Seeing as your test was a couple of years back and I assume you have been drinking at least occasionally since then it is entirely possible you could now have cirrhosis.

Just wondering if you have discussed with your liver specialist their opinion on your continuing consumption of alcohol.

Once upon a time I was grade 1 on my first liver biopsy back in 1993 but 15 years later I was told in Jan 2008 I have cirrhosis. I used to love beer spent 8 years drinking beer in the land of beer Germany while I was in the Army. Can't ever have a beer again now not even if I finally beat hep c.

I just hope you will think about how much you really need that beer. Even if you are cured F3 is considered advanced fibrosis and is treated as urgent need for treatment just as much as F4 cirrhosis
Best wishes and hope you make SVR
Lynn

dragonslayer · « **Reply #148 on:** November 29, 2014, 10:49:55 am »

Quote from: JoeK9999 on November 26, 2014, 04:01:41 pm

Rubye,
Thanks for the info and link. It still seems like the quantitative is definitive test
which says either positive or negative. When I have had the viral load test and most people who get one 15 is usually the low end. I would have liked to have known
if my viral load was near or under 15 rather than a positive or negative.
My doc without wanting tests says 8 weeks for me and check for an SRV in 6 months.

Thats exactly what my hepatologist said.. Im also on 8 wks treatment having commenced treatment 4 days ago .. I asked him didnt he want to test me right after treatment? But he seemed only interested in the 6 month result.. So, we wait... With a cure rate of around 95% though, it doesnt seem too much of a gamble...

BattleTheBeast · « **Reply #149 on:** November 29, 2014, 11:18:37 am »

Quote from: Ralph on November 28, 2014, 06:40:25 pm

Stage and level were determined with a biopsy take during a surgery 2 years ago. My enzyme levels have most always been normal which contradicts the biopsy findings.
I'm just craving a beer, not indulging. I am looking forward to cracking one open in a few months though!

Hi Ralph,

I am stage 4, don't drink and never really did. I even quit smoking a year ago before I even knew about the Hep C; believe me when I tell you that you do not want your virus to progress. I feel like crap all the time and it stinks!

~Mel~

UndetectableC · « **Reply #150 on:** November 29, 2014, 04:37:56 pm »

This thread is great - thank you to all who shared! I was feeling alone out there with my sides, and just a bit whiny. I'm on the 8 week Harvoni regimen and have had lots of mild to moderate side effects. I do tend to be sensitive to medications in general.
Week 1 - burst of energy the first couple days, tummy troubles, flushing, chills, side aches
Week 2 - all the same side effects, plus super irritable and tired, had 2 boils, lost 8lbs.
Week 3 - same sides plus head fog rolled in, leg cramps, back cramps, but less irritable, appetite returned - gained back 2 lbs
Week 4 - Same sides, plus super irritable again, more 'spacy', cramps persist, night sweats increased, appetite decreased, lost 2lbs again, blurry vision now and then
Week 5 - less irritable, insomnia, continued night sweats and a nosebleed so far this week. Starting to feel pressure headaches.

I probably forgot something, but that's the majority of my sides and experiences. The only pain meds I've used is analgesic cream for the cramps.

It's unpleasant, but not debilitating, thankfully. But I don't feel comfortable driving with the vision issues and spacy head.

Thanks to everyone for sharing their experiences,too.

Anand · « **Reply #151 on:** November 30, 2014, 08:53:15 pm »

Harvoni VL after 1 week***

Hello everybody,

I hope y’all had a nice Thanksgiving. I have some good news to share. This is about viral load after one week after BOT (Beginning Of Treatment). Actually it is after 7 ½ days, to be technical about it, due to the fact that I consumed 8th tablet of Harvoni at 8 PM and the blood drawn the next morning. I had indicated that the information may be available last Monday but due to some snafu I was able to get it only yesterday. Be that as it may, you will see the results later. Now briefly my Hep C bio.

I had a heart attack when I was 50 years of age, 27 years ago. I also had Hep C laden blood transfusion at that time. I was told in 2006, the then available interferon + Ribavarin are not suitable due to my weakened-heart and low percentage of cure rate. It was suggested that I wait as there were some promising research going on. Now fast forward to 2014. When Sovaldi touted to be the forerunner and savior of new class of medicines for Hep C, I sprang into action only to find out that I wait until October 10th. The villains are Ribavarin due to its side effects of anemia and Olysio with its drug interference with Coumadin that I take as blood thinner. Now hello to 12 weeks of Harvoni.

My geno type is 1a, VL is in the range of 1.18 to 1.86 million IU/mL ( 3 measurements at 6 months span) with BOT-1 day or baseline data at 1.33 million IU/mL, am treatment naïve and my liver at the cusp of stage 3 and stage 4. After some stress test of my heart I was declared by the cardiologist that I was good to go.

I took my 16th tablet today and I have had no side effects so far.

Here are the results. I have given results as BOT-1d/BOT+7d for easy comparison.

Viral load (IU/mL): 1.33 million/20 yes 20
MDL or Minimum Detection Limit is 15 IU/mL
AST (U/L): 74/21
ALT (U/L): 82/29

I am not fooling myself that the game is over. I have long ways to go. Thanks. Anand

***(written on 11/27/14 but posted here on 11/30/14)

gam1959 · « **Reply #152 on:** November 30, 2014, 09:21:54 pm »

I am new to the forum and due to start Harvoni this Tuesday Dec 2,2014 . Is this your first treatment ? What could I expect in regards to working daily?
Gerry M

Lynn K · « **Reply #153 on:** November 30, 2014, 09:36:48 pm »

Hi Gerry

I just took Harvoni pill number 13 on my 24 week treatment. I have treated 3 times with interferon based treatments (null responder) an once with Sovaldi Olysio (relapsed) I am 56 y/o female diagnosed cirrhosis Jan 2008 on biopsy.

I work full time and continue to do so. I think I may be extra tired of maybe just the Thanksgiving turkey.

Good luck on treatment
Lynn

gam1959 · « **Reply #154 on:** November 30, 2014, 09:56:28 pm »

Thank you Lynn for sharing and giving me hope to work . I realize that it is easy to get caught in comparing side affects from self. This is my first treatment and have refused to take interferon and now my time has come to try noninterferon. I do have some anxiety for side affects. My faith will carry me and prayer.

Thank you Gerry

Mike · « **Reply #155 on:** November 30, 2014, 10:01:30 pm »

Hey Anand,

That's great news! These new drugs are working miracles everyday!

Best wishes, Mike

sunrise · « **Reply #156 on:** November 30, 2014, 10:15:05 pm »

Hey warriors
Hope you a had a grateful and wonderful Thanksgiving. On my 64th day od S/O treatment. Love my ambien 5 mg a night and a wonderful nights sleep. Doc had told me ( which I don't drink) that drinking alcohol is like putting fuel on the fire. So IMO it is imperative that you don't drink while on treatment. I am hepc g1 had it about 23 yrs diagnosed in June with 5 mil vl. My 4 week PCR was no numeric quant of virus yay! My alt and ast have dropped from start 46, 25 to 17, 13. Amazing huh. It is a blessing my doc told me I was at stage 1. Wierd as o was no angel all these yrs. Wanted to waot for Harvoni bit needed to start tx right away as o was progressing rapidly. Good luck warriors keep up the good fight!!..... Sunrise

sunrise · « **Reply #157 on:** November 30, 2014, 10:17:32 pm »

Oh and gam 1959 I have had anxiety as well. Doc gave me.5 mh of klonapam. Does the trick.

Anand · « **Reply #158 on:** December 01, 2014, 10:45:32 am »

Mike,

Thanks. You guys are the real warriors. I did not go through the early days of agony of interferon and ribavirin. Now I have a question.

When I calculate 7 days after beginning of treatment I actually use the residence time of the Harvoni in the blood stream. for example when I take my first tablet on, say, Wednesday 8 PM, the medicine has been in the blood for 1 day at 8PM Thursday and so on. Therefore the 8th tablet taken on the following Wednesday 8PM will signal that Harvoni has been in the blood stream for 7 days. Am I right?

Thanks. Anand

elizabethfaraone · « **Reply #159 on:** December 01, 2014, 01:34:04 pm »

Thank you for posting this topic. I'm waiting for HARVONI to be delivered to me today (Dec. 1) but the package has seemed to have lost it's way. It will find it's way to me soon. I'm so excited!

I will be 53 years old in January. I have genotype 1a with a mutation called Q80K polymorphism and have avoided treatment since diagnosis in 2001 with the belief that a safe and effective cure would be developed. I can't be sure how or when I contracted the virus but I can point to at least 10 instances of possible transmission from childhood to diagnosis. I'm a healthy eater, have never been a user of alcohol, tobacco or drugs and have become very gentle with myself. Recent fibroscan, ultrasound and blood work indicate I am healthy. I've been battling chronic fatigue and body aches that have increased in severity over the past 20 years. I also have a chronic lung condition (probably genetic) that leads to lung collapse when I am in a weakened state and this the main reason I avoided treatment with Interferon.

I have paid close attention to the developments in treating hepatitis C and was very excited when Michael Sofia was successful in treating patients three years ago with the medicine he developed while working at Pharmasset. Two years ago, I began my quest to start treatment with what is now called Sovaldi.

I'll make sure to post any side effects I experience while taking HARVONI. Thank you for letting me join this discussion.

jberlin · « **Reply #160 on:** December 01, 2014, 01:36:31 pm »

Mario,

Continued good luck & keep us posted as it has been a few days. I hope the treatment is going even better than their stock.

-jack

jberlin · « **Reply #161 on:** December 01, 2014, 01:39:53 pm »

Elizabeth, Good luck as you begin, and do keep us updated. -jack

dragonslayer · « **Reply #162 on:** December 01, 2014, 01:49:50 pm »

Quote from: mario555 on November 17, 2014, 10:22:30 am

Just started Harvoni 3 days ago. I am on a 24 weeks plan because of my F4 and the fact I tried (unsuccesfuly) to do Interferon (2000) and PegIntron (2010). No side effects worth mentioning except a ''hunger'' which is not usual for me. I've been eating all the time over the last 3 days!
I'm F4 with no apparent cirrhosis and have had the disease for the last 35-40 years (my guess). I am a 59 years old Canadian, in relatively good health, don't drink, somewhat careful with my food and an occasional pot smoker. I am supposed to get tested regularly to see how the medication works but I am not terribly interested to have those blood tests. The only blood test I'm interested in is the one 12 weeks after completion. With the 98%+ cure rate promised by the company, I don't want to get poked, prodded or examined anymore!
The cost is taken care of by my insurance company (max $50,000/yr) but we are at the end of 2014... So, I'll get a second $50K in 2015. The remainder is assumed mainly by Gilead's millennium organisation. My net, out of pocket expense, should be around $20-35,000 after 24 weeks of medication. Not cheap! but I think it has the potential of increasing my lifespan by 15 years so, it is something worthwhile.
Good luck to all. Plan carefully the costs (plan for the worst and hope for the best!), jump through the hoops as required, become friend with your pharmacist (can lower your cost by 7-8%), take a second job. These are the things I've been doing over the last year while I was following all the details of Gilead. I did purchase some of their shares 1 1/2 year ago on the stock market to better follow them. I doubled my money in 18 months! The proceeds were used to help finance my medication.

I wish I had bought shares.. Well, I kind of did, indirectly, via my mutual funds.. But I knew that stock would explode.. after all, Abvie, Gilead, BMS, etc, etc, should all make out like a bandit once they start reaping the rewards of their investment in this field.

mario555 · « **Reply #163 on:** December 01, 2014, 05:07:38 pm »

I'm in treatment with Harvoni for 3 weeks now. I have 24 weeks to do for my 1a F4 status. Everything is going well with few side effects EXCEPT for "pinching pains" in my liver every 2nd day or so. Pain is similar to liver pains I used to have while not on treatment. Anybody on Harvoni has any of those?

Doluska · « **Reply #164 on:** December 01, 2014, 05:16:52 pm »

Hi Mario! I have kinda feeling of heaviness at my liver site. My Md. told that this is good sign, and he is on this field more than 50 years. D

dragonslayer · « **Reply #165 on:** December 01, 2014, 05:24:06 pm »

Quote from: Doluska on December 01, 2014, 05:16:52 pm

Hi Mario! I have kinda feeling of heaviness at my liver site. My Md. told that this is good sign, and he is on this field more than 50 years. D

Im not feeling heaviness in my liver site.. Is this a bad sign?

Doluska · « **Reply #166 on:** December 01, 2014, 05:50:00 pm »

I don't think so. Most of the side effects and feelings are very individual. My liver is not in the best condition, it may explain some of the simptoms too. Or my doc. Just wanted to give me some encouragement. We are clinging to any good sign with hope, we want to be cured so badly! I am so scared and trying my best to turn anything to good and promising...

dragonslayer · « **Reply #167 on:** December 01, 2014, 05:54:30 pm »

Quote from: Doluska on December 01, 2014, 05:50:00 pm

I don't think so. Most of the side effects and feelings are very individual. My liver is not in the best condition, it may explain some of the simptoms too. Or my doc. Just wanted to give me some encouragement. We are clinging to any good sign with hope, we want to be cured so badly! I am so scared and trying my best to turn anything to good and promising...

Over the last few years, I would get occasional bouts of Upper Right Quadrant pain... It was a mild kind of heaviness that would come and go. Hasnt happened recently, but a month ago when I saw my hepatologist to get my prescription handled, they asked if i had any symptoms.. He did my bx for me which turned out very minimal liver damage, so when I told him I had this periodic upper right side pain, he tells me I dont have any marked fibrosis or inflammation, and that the liver doesnt 'feel' pain, so its not that.. Weird how so many patients are reporting the same thing, and the hepatologists almost universally deny it exists!

Doluska · « **Reply #168 on:** December 01, 2014, 06:49:00 pm »

I'd tell more: my doc. Told me that I have no side effects, and it is only in my head. I was so mad!! May be he compeers to interferon ? But I was feeling awful first weeks, and even now, after 5 weeks I am weak and shaky. This site gave support and feeling that I am not alone. But, I am trying not to pay attention to scary and pessimistic notes. Only hope and positive news!

elizabethfaraone · « **Reply #169 on:** December 01, 2014, 07:12:16 pm »

Quote from: Doluska on December 01, 2014, 06:49:00 pm

I'd tell more: my doc. Told me that I have no side effects, and it is only in my head. I was so mad!! May be he compeers to interferon ? But I was feeling awful first weeks, and even now, after 5 weeks I am weak and shaky. This site gave support and feeling that I am not alone. But, I am trying not to pay attention to scary and pessimistic notes. Only hope and positive news!

It's easier to tell the patient they don't have side effects than to collect the data. So we just have to talk to each other to get better understanding.

mario555 · « **Reply #170 on:** December 01, 2014, 09:05:12 pm »

Most doctors I know (hepathologists) say exactly that; the liver can't feel pain! I would bet they most probably don't have Hep c... I've had pains "pinching" and sometimes "pulling hard" and it didn't come from anywhere. So it is not my imagination! Many Hep c sufferers will attest to that.
On another note, it's interesting to see someone who worries because of no pains and another one who worries 'because' of the pain!! Being the first batch of patients on Harvoni, it's interesting to see everyone's experience

elizabethfaraone · « **Reply #171 on:** December 01, 2014, 09:09:25 pm »

Quote from: mario555 on December 01, 2014, 09:05:12 pm

Most doctors I know (hepathologists) say exactly that; the liver can't feel pain! I would bet they most probably don't have Hep c... I've had pains "pinching" and sometimes "pulling hard" and it didn't come from anywhere. So it is not my imagination! Many Hep c sufferers will attest to that.
On another note, it's interesting to see someone who worries because of no pains and another one who worries 'because' of the pain!! Being the first batch of patients on Harvoni, it's interesting to see everyone's experience

Well that's strange for them to say. The liver is an extremely richly innervated organ. Why would they say something so stupid. Punch someone in their liver, and they will feel A LOT of pain. Read here: http://www.ncbi.nlm.nih.gov/books/NBK53061/

mario555 · « **Reply #172 on:** December 01, 2014, 09:28:43 pm »

Real funny your "punch in the liver" and then I looked at the pictogram. Now it's even funnier!
On the serious side. What I don't get is their continued belief in the liver having no pains while they must be in contact with many liver sufferers who report pain. May be they mean the 'threshold of pain'!!

elizabethfaraone · « **Reply #173 on:** December 01, 2014, 09:36:52 pm »

Quote from: mario555 on December 01, 2014, 09:28:43 pm

Real funny your "punch in the liver" and then I looked at the pictogram. Now it's even funnier!
On the serious side. What I don't get is their continued belief in the liver having no pains while they must be in contact with many liver sufferers who report pain. May be they mean the 'threshold of pain'!!

I think doctors are just queens of denial.

Rubye · « **Reply #174 on:** December 01, 2014, 11:01:02 pm »

Interesting. I've had that "heaviness" at my liver but have been writing it off as gas. It's only been since I started s/o tx though.

Bucky · « **Reply #175 on:** December 01, 2014, 11:06:05 pm »

Quote from: mario555 on December 01, 2014, 09:05:12 pm

Most doctors I know (hepathologists) say exactly that; the liver can't feel pain! I would bet they most probably don't have Hep c... I've had pains "pinching" and sometimes "pulling hard" and it didn't come from anywhere. So it is not my imagination! Many Hep c sufferers will attest to that.
On another note, it's interesting to see someone who worries because of no pains and another one who worries 'because' of the pain!! Being the first batch of patients on Harvoni, it's interesting to see everyone's experience

I felt like I was kicked by a horse when I had my biopsy. My liver felt something.
Bucky

jberlin · « **Reply #176 on:** December 01, 2014, 11:13:30 pm »

Anyone that had a liver biopsy before they became CT guided would say the liver has pain cells. I had one in 1977 when I became jaundiced and it felt like a mule kick, then I had to lay on my side for 4 hours to make sure the bleeding stopped... Lots of things have things have improved medically since then! -jack

PaulG · « **Reply #177 on:** December 01, 2014, 11:46:14 pm »

Yes I had a liver biopsy like that years ago But the laying on my side was the worst part more then the pain from that huge needle.Never did that again

Bucky · « **Reply #178 on:** December 01, 2014, 11:47:13 pm »

Quote from: jberlin on December 01, 2014, 11:13:30 pm

Anyone that had a liver biopsy before they became CT guided would say the liver has pain cells. I had one in 1977 when I became jaundiced and it felt like a mule kick, then I had to lay on my side for 4 hours to make sure the bleeding stopped... Lots of things have things have improved medically since then! -jack

The last one I had was US guided and I had IV sedation so I did not feel a lot. I still had to wait for three hours with a weighted blanket on the puncture site.
Bucky

art1951 · « **Reply #179 on:** December 02, 2014, 08:55:51 am »

UNDETECTED!!

Finally got my 4 weeks results. They actually forgot to ask the lab to do the RNA tests and I had to remind them a week later so they are 6 weeks in.

AST 23/was 75
ALT 15/ was 93
HCV RNA, QUANTITATIVE REAL TIME PCR NOT DETECTED

I am still having some issues with blood pressure and headaches but my primary care is adjusting the medication and it is getting better.

-Art

badbradley · « **Reply #180 on:** December 02, 2014, 09:05:16 am »

Art That's what we all love to see!! Happy Day! The 6 wk. draw always made more sense to me. I am skipping the VL check - waiting the 12 wks. for SVR12. Congratulations!! Brad

jberlin · « **Reply #181 on:** December 02, 2014, 09:11:56 am »

Fantastic news Art! Make sure you are drinking lots of water and keep marching toward being cured. All of us are happy for you and eagerly await your next status update. -jack

Bucky · « **Reply #182 on:** December 02, 2014, 09:21:47 am »

Art,
Congratulations, this is very good news indeed!
Bucky

elizabethfaraone · « **Reply #183 on:** December 02, 2014, 10:04:55 am »

Congratulations, Art!

PaulG · « **Reply #184 on:** December 02, 2014, 10:13:56 am »

Congratulations !!!!!!!!!

fllazylady · « **Reply #185 on:** December 02, 2014, 02:24:56 pm »

Good news Art.. Going for my CBC/Platelets with differential that's the only blood work they ask for.at 4 wks. At 6 weeks I go for something different each time after..
Sounds like we are all on the cure train... Woo Hoo...
Happy Holidays...

Vicky · « **Reply #186 on:** December 02, 2014, 04:27:36 pm »

I thank you all for your input. I am in the process of getting approved for Harvoni. Anxious to get through it. I spent 3 different years on combinations of interferon and other medications. I was diagnosed in 1989, the medications never worked but make me horribly sick. I ended up with cirrhosis and liver cancer. Luckily 2-1/2 years ago I received a great liver and I'm doing very well, except for the hep c. Anyone else post liver transplant?

fllazylady · « **Reply #187 on:** December 03, 2014, 01:56:15 pm »

Wow God Bless you. I'm sure it's been a hell of a ride..Hopefully Harvoni will save us all in this New Year.. Welcome and keep us posted.. I'm 4 weeks in..I am so grateful to see a cure in my lifetime

scared of meds · « **Reply #188 on:** December 03, 2014, 03:11:03 pm »

Hello Everyone,
My name is Margo and I was diagnosed with Hep C in 2010. I did not do the Interferon with the other drugs as I was terrified of the side effects. My dr. had me signed up with a psych for depression and a dermatologist because of the rash I would get because of the meds.
I am now seeing a different person, she is a Nurse Practioner and all she does is treat Hep C patients. She was very patient with me and my issues with strong drugs. Well... I just received my VL over 6 mil. So she is now applying with my insurance company to get approved for Harvoni.
I want to be rid of this disease but am terrified of the side effects. I guess I am writing to get some encouragement. Thanks

elizabethfaraone · « **Reply #189 on:** December 03, 2014, 03:18:16 pm »

Quote from: scared of meds on December 03, 2014, 03:11:03 pm

Hello Everyone,
My name is Margo and I was diagnosed with Hep C in 2010. I did not do the Interferon with the other drugs as I was terrified of the side effects. My dr. had me signed up with a psych for depression and a dermatologist because of the rash I would get because of the meds.
I am now seeing a different person, she is a Nurse Practioner and all she does is treat Hep C patients. She was very patient with me and my issues with strong drugs. Well... I just received my VL over 6 mil. So she is now applying with my insurance company to get approved for Harvoni.
I want to be rid of this disease but am terrified of the side effects. I guess I am writing to get some encouragement. Thanks

Hi, Margo. I was diagnosed in 2011 and initially resisted Interferon but was then convinced by my doctor to get treated with it. Biggest mistake I ever made. My symptoms were severe and I stopped immediately, but the side effects continued for three months. I've waited for years for a safe and effective medicine, and I believe Harvoni is just that. I started yesterday and am feeling tired and had stronger body aches than usual yesterday that subsided last night. I'm not feeling side effects today. I know many people who have used Sovaldi and have been successfully cured with no serious side effects. So I encourage you to take Harvoni. It has been three years since patients were first treated successfully with Sovaldi and I haven't heard any bad news about Sovaldi.

scared of meds · « **Reply #190 on:** December 03, 2014, 03:26:52 pm »

Does Solvaldi have to be taken with something else? I am just waiting as my paperwork was just submitted today to my insurance company for Harvoni. I probably will take it but I am afraid of the residual effects.

Lynn K · « **Reply #191 on:** December 03, 2014, 03:37:37 pm »

Hi

I treated 3 times with interferon based treatments was tough but survived. Unfortunately I was a null responder and there were no more treatments available for me I had developed cirrhosis and had no treatment options.

Finally Sovaldi and Olysio were approved separately and I was able to treat with them both off label for 12 weeks. I was undetectable at week 4 and stopped at 12 weeks felt fine the whole time. Unfortunately I did not achieve SVR 12 and relapsed 12 weeks after I stopped the meds. So now I am taking Harvoni I just started week 3 of 24 and don't feel really and different maybe had some flushing the first day or two. Maybe a very mild headache whether from meds or not who knows other than that nothing to report.

Good luck on treatment go kick some dragons butt!
Lynn

mario555 · « **Reply #192 on:** December 03, 2014, 03:49:04 pm »

I was treated twice with peg ifn and it was hell. Like Lynn, I'm 3 weeks in and have no side effects to write home about. Good luck and don't worry about it. For 90+% of the people it will put an end to the disease.

scared of meds · « **Reply #193 on:** December 03, 2014, 04:22:02 pm »

I can't tell you how much I appreciate your feed back. I guess I feel in control if I am not putting anything too powerful into my body. So taking a powerful drug would make me out of control, BUT...I am going to kick some dragon butts. I am getting my courage up and going to take Harvoni, provided my insurance accepts it and then move on with my life. I appreciate all of you more than you know. I have to go now but will return.
Love to all,
Margo

elizabethfaraone · « **Reply #194 on:** December 03, 2014, 04:41:35 pm »

Margo, keep in mind I don't work so I can rest all day. If I had to go to work, I wouldn't be able to tolerate this treatment. I am very, very tired and when I do something like walk up two flights of stairs after I've been sitting for 15 minutes, I feel like I've walked six miles. But this is NOTHING compared to the Interferon treatment With Interferon, there is nothing I could do to escape the suffering. With Harvoni, rest brings relief.

UndetectableC · « **Reply #195 on:** December 03, 2014, 05:06:21 pm »

Quote from: Vicky on December 02, 2014, 04:27:36 pm

I thank you all for your input. I am in the process of getting approved for Harvoni. Anxious to get through it. I spent 3 different years on combinations of interferon and other medications. I was diagnosed in 1989, the medications never worked but make me horribly sick. I ended up with cirrhosis and liver cancer. Luckily 2-1/2 years ago I received a great liver and I'm doing very well, except for the hep c. Anyone else post liver transplant?

I'm not post transplant, but I wanted to wish you the fastest approval possible. Hope to read that you're in TX very soon!

Doluska · « **Reply #196 on:** December 03, 2014, 05:36:00 pm »

Don't think twice! Start now! I am after cancer treatment, 2 heart surgerys and was waiting for those med's 25 years!! We are so lucky to live at this time! More then this, I was fighting two months to get Sovaldi/Olysio, in Canada it is a whole other story. I wouldn't survive Interferon, no chance. I wish Harvoni was avalible when I started, but even now, I am happy, becouse Harvoni is my plan B. Side effects are manageable. Believe me, if I with my hear,depression and fibrosis 3-4 can take it, everybody should try and be successful! Good luck!
,

elizabethfaraone · « **Reply #197 on:** December 03, 2014, 05:39:38 pm »

Quote from: Doluska on December 03, 2014, 05:36:00 pm

Don't think twice! Start now! I am after cancer treatment, 2 heart surgerys and was waiting for those med's 25 years!! We are so lucky to live at this time! More then this, I was fighting two months to get Sovaldi/Olysio, in Canada it is a whole other story. I wouldn't survive Interferon, no chance. I wish Harvoni was avalible when I started, but even now, I am happy, becouse Harvoni is my plan B. Side effects are manageable. Believe me, if I with my hear,depression and fibrosis 3-4 can take it, everybody should try and be successful! Good luck!
,

I agree, Doluska. And I've been paying attention to what's goin' down in Canada. I was very upset by it. I downloaded this video and posted it on my YouTube channel: https://www.youtube.com/watch?v=MZgX_Nmf5NA

Doluska · « **Reply #198 on:** December 03, 2014, 08:11:19 pm »

Thank you, Elisabeth ! It was educating, thak's God, I am not in Alberta! This doctor sounds very cinical!! Unfortunately, more than half of them are like this. Working in a health care I saw a thousands of doctors who doesn't care and only very little who really, really thinks about the patents, and compattionate. Please, aim for the best, and do not take less than this. D.
P.s. Interesting, that a lot of them thinks that they are God. Ups! Big mistake! They gonna die too!

Lynn K · « **Reply #199 on:** December 03, 2014, 09:40:11 pm »

Also not post transplant but did mean to mention I am a 56 year female and work 40 hours plus occasional overtime on second shift in a machine shop.

Still going strong.

Lynn

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