Author Topic: Harvoni Side effects (Read 2190118 times)

chevy333 · « **Reply #2200 on:** May 29, 2015, 11:16:52 am »

the dr and i tried everything, im done !! and for the people to say keep going, they dont have these SEVERE HEADACHES, AND NOTHING WORKING TO GET RELIEF, SO IM SPENT AND I CANT TAKE THIS NO MORE, WHEN YOUR DONE YOUR DONE, I NEVER EXPERIENCE ANYTHING LIKE THIS EVEN TRU 2 CANCERS, SO IM DONE, IM UNDETECTED AND HOPE IT STAYS THAT WAY.

KimInTheForest · « **Reply #2201 on:** May 29, 2015, 01:18:21 pm »

Quote from: chevy333 on May 29, 2015, 11:16:52 am

the dr and i tried everything, im done !! and for the people to say keep going, they dont have these SEVERE HEADACHES, AND NOTHING WORKING TO GET RELIEF, SO IM SPENT AND I CANT TAKE THIS NO MORE, WHEN YOUR DONE YOUR DONE, I NEVER EXPERIENCE ANYTHING LIKE THIS EVEN TRU 2 CANCERS, SO IM DONE, IM UNDETECTED AND HOPE IT STAYS THAT WAY.

I hope your viral load stays undetected too, @Chevy333

And if by any chance it doesn't, just remember that new and even better drugs are entering the pipeline all the time. The race is on. You will have another chance with something else if you need it. But let's hope you don't!

Best of luck to you,
kim

Mugwump · « **Reply #2202 on:** May 29, 2015, 01:56:24 pm »

Quote from: 2rivers on May 29, 2015, 11:09:46 am

Chevy: The doctor must think your migraines are due to dilated blood vessels in your brain if he prescribed Imitrex. Sorry to hear it is not working. I hope there is some way you can endure to stay on treatment. Long shot, but you might consider a chiropractor - some migraine patients (my wife included) have gotten some relief from a realignment of the neck muscles.

I'm happy to report that, after 4 days of beginning a 12-week Harvoni regimen, I am experiencing absolutely no side effects. If anything, I have more energy than normal...still playing tennis everyday, doing yardwork, biking, etc. I'm drinking tons of water, but haven't changed anything else. I hope I didn't just jinx myself as I notice some posters started experiencing adverse side effects some time after beginning treatment.

Thanks for this info about why Chevy needed the med I was really concerned about his situation. I would hate to see anyone have to give up during the critical phase of eradication of the virus when the viral load is low but uncertain as to whether or not completely clear!

One word of caution though, please try not to over do exercise, certainly it is a necessary thing but your liver will go through some changes and you can wind up with muscular fatigue on this med. I did when I over did it because my strength returned. My stamina however is another question, I highly doubt that I could do an all day hike in a strenuous place with a heavy back pack. Before HCV started to put me down in about 1980 I was in shape to the point were I could carry 75 lb hose packs on my back all day fighting forest fires.

My stamina is much better but it still has a long way to go before I can put in the 8 to 10 hours of hard physical work that is necessary to actually make a living for us long term industrial slaves that have been made house bound by HCV

Most likely you have not had the same level of liver damage that I have but still Harvoni does tax the system and you might or might not find strenuous exercise possible at some time during and for a short period after treatment.

Please keep us up on how you do because the correlation between the level of physical activity while on treatment and the relative levels of liver damage is good to know for those who consider working hard physically while on treatment! Certainly this is more anecdotal evidence than scientific but the studies of Harvoni give no indication whatsoever as how people actually react to the changes that happen to their systems.

At least this way those who tend to overexert themselves to make a living will find some re-assurance in the experiences of others not experiencing problems with overexertion.

take care and slay the dragon
Eric

angelina · « **Reply #2203 on:** May 29, 2015, 02:15:04 pm »

Hi everyone.
I am 1 month on Harvoni. Didn't have any bad side effects for the first week and then contracted or developed a bad cold/fly which is there for 3 weeks now and doesn't seem to go away. It's like going in circles - gets better and than all the symptoms come back again - and so for 3 weeks. Does anybody have that? I believe I can't take any medication or antibiotics while on Harvoni, is that right?

Is it really a side effect or it means that i am not fighting the virus?

Appreciate any advice...

bassman55 · « **Reply #2204 on:** May 29, 2015, 03:20:49 pm »

I'm 4 weeks in of 12 week treatment and riding my motorcycle,fishing,playing music(gigs),cutting grass,etc. As I said in another post,I had one day maybe day 8 that I had vertigo for about 5-6 hours,it's been cake since,I look forward to my pill every day!

Katie · « **Reply #2205 on:** May 29, 2015, 03:36:49 pm »

Hey Bassman...My treatment was good too except for weeks 8 &9 where I had about 10 days of severe depression, something I had never experienced before. One morning I woke up feeling terrific again! Since I've been off treatment, not feeling all that good. Really tired with no endurance or ambition, which isn't like me either. The good news is, others who have been feeling lousy after treatment are now coming around and feeling good so I am looking forward to that, and I must say, I've been missing my Harvoni pill. I felt better on treatment than I had in years and remodeled my 2 bedrooms.

Angelina: I suggest you go to the doctor to make sure you don't have pneumonia since it is hanging on for so long. There was a gal on this forum who was sick in the same way and that is what she had and the doctor did give her antibiotics. You don't need to be stressing your immune system right now so best be cautious.

Hope everyone is enjoying this summer and for anyone in Texas, I hope all is OK for you and your family!

Katie

bassman55 · « **Reply #2206 on:** May 29, 2015, 03:43:39 pm »

Now ya got me worried....I just keep positive,working on tunes for gigs keeps my mind sharp and makes me focus on the task at hand.And riding my scoot makes me forget all my problems,it's my "cycletherapy"

dragonslayer · « **Reply #2207 on:** May 29, 2015, 03:48:45 pm »

Quote from: bassman55 on May 29, 2015, 03:43:39 pm

Now ya got me worried....I just keep positive,working on tunes for gigs keeps my mind sharp and makes me focus on the task at hand.And riding my scoot makes me forget all my problems,it's my "cycletherapy"

Riding and Music.... Great therapy!! HCV has been so unkind to so many icons in music... The list is too long, and the outcomes often too depressing to see our erstwhile heroes struck down like that. If only Harvoni came a long just a little sooner...

Katie · « **Reply #2208 on:** May 29, 2015, 04:13:50 pm »

Quote from: bassman55 on May 29, 2015, 03:43:39 pm

Now ya got me worried....I just keep positive,working on tunes for gigs keeps my mind sharp and makes me focus on the task at hand.And riding my scoot makes me forget all my problems,it's my "cycletherapy"

Didn't mean to worry you..I cleared the virus, so far (approx week 12 post) and remember everyone has different experiences. I just wanted to give you heads up in case your energy fades. It may just be part of the healing process. Many folks feel fine after treatment and others don't. Who knows why.

I like you cycletherapy. A good way to energize, with the wind in your hair and the music in your soul!

Katie

dogdave · « **Reply #2209 on:** May 29, 2015, 04:31:57 pm »

Quote from: angelina on May 29, 2015, 02:15:04 pm

Hi everyone.
I am 1 month on Harvoni. Didn't have any bad side effects for the first week and then contracted or developed a bad cold/fly which is there for 3 weeks now and doesn't seem to go away. It's like going in circles - gets better and than all the symptoms come back again - and so for 3 weeks. Does anybody have that? I believe I can't take any medication or antibiotics while on Harvoni, is that right?

Is it really a side effect or it means that i am not fighting the virus?

Appreciate any advice...

Angelina, talk to you GI or contact a Gilead nurse and they should be able to advise you. Hope you feel better, I have some miners issues, but I am saving them for my GI. See someone that can advise you with Harvoni, most General Practitioners can't.

Good luck! David

joelyzabeth · « **Reply #2210 on:** May 29, 2015, 05:18:58 pm »

Hello everyone!
Started week 3 of Harvoni on Sunday and will be going in for my f/u labs on June 2. Still experiencing some side effects but nothing I haven't been able to manage. Just got over the flu earlier this week and the combination of Harvoni tx and the flu doesn't mix well. Glad to say although I am still having sleeping problems I am feeling more rested if that makes any sense at all.

My appetite has improved and I am starting to feel more energetic and not as fatigued as I was when I first started. I keep myself hydrated as much as possible and although I am not a physically active individual I have been spending more time outside.

Since my VL was originally <1 million I am hoping for an undetectable status when I go in for labs. Taking a trip to VA for my little sister's HS graduation for a few days, hoping the trip will do me some good. Traveling from New Jersey.

It's good to see so many success stories mist Rhea aide effects, etc. It's also informative to know I not alone in my struggle with those who are experiencing some of the same issues I am taking Harvoni. All I can hear my doctor saying is, "Jo, it's only 12 weeks! You can make it. " I'm hoping she is right as its not just my Hep C she has to monitor we have to make sure we keep my HIV at an undetectable status as well as achieving UND for the Hep. Wish me luck and I keep everyone in my thoughts and prayers and look forward to reading your posts for inspiration.

Blessings......
J

bassman55 · « **Reply #2211 on:** May 29, 2015, 07:02:13 pm »

Thanx Dragonslayer and Katie....I'm in it...to win it! I've had itching for a couple years,mostly my back and I read that's a symptom of cirrosis ,but have noticed it easing up slightly.Man if there's one thing I want to go away it's that! My left shoulder is in pain now from trying to reach around to my back to scratch or put lotion on. I've been dating a french chick,and at a gig I asked her to scratch my back...she said no,you don't do that in public....WHAT??? Needless to say,I'm now going to find an american GF now...there has to be someone out there who'll scratch my back? LOL F#ck the french etiquette

Katie · « **Reply #2212 on:** May 29, 2015, 07:29:55 pm »

You got a good chuckle out of me with that Bassman! I had a couple little bunmps on the back of my neck (easy reach) for YEARS that would itch like crazy. I even had a biopsy done on them as I was worried since I've had skin cancer in the past. They kept itching until after treatment and one day they were gone. YAY...totally gone. No more itching and no more bumps. A small thing, but irritating and worrisome.

So here is to an itch free future and one less thing to screen your GFs over. HA!

Katie

bassman55 · « **Reply #2213 on:** May 29, 2015, 08:58:51 pm »

Katie...I PRAY....this itching goes away by the end of treatment,I have 8 more weeks,this is probably comparable to Dick Chaney and his water boarding torture tactics. Maybe this is where "The 7 year itch" came from??? Luckily I use my back scratcher gently on my back and not scaring or causing blood,it has been bugging me at gigs from my strap holding my bass....but I can still get jiggy!!!! LOL Rawk on!

bassman55 · « **Reply #2214 on:** May 29, 2015, 09:03:10 pm »

P.S. Katie,I too had skin cancer(basal cell which as far as cancer's that's the one to have) and I have a 1 inch or more scar on my cheek from that....probably from riding motorcycles for so long....

Debula · « **Reply #2215 on:** May 29, 2015, 09:14:01 pm »

Hi all and Hi Baseman
I had to laugh at your French GF''s remark
I am glad your itching is getting a little better. Mine is gone!! I hope it never returns
Hoping the same for you. I'm glad to see that you are doing well and no more vertigo spells
Keep well
-Deb

livinginthemoment · « **Reply #2216 on:** May 29, 2015, 10:37:21 pm »

So i have had hep c for quite some time now. My doctor has always been on top of the tests and kept telling me of all the meds coming. And finally there is Harvoni. My insurance had sent me a letter at the beginning of the year but I was dealing with other health issues, Meniere's disease. So now that is being "controlled" and I knew it was time. So I made the appt and as soon as I opened my mouth we both said Harvoni together. Got approved in 2 days and the meds were delivered on this past Wednesday. I started on Thursday morning. Problem is i have been having pain in my lower abdomen since Wed night (before even starting Harvoni). And now I am dealing with what my doc believes is a ruptured ovarian cyst and the fatigue and mild headache. I am hoping the cyst goes away and I can start to focus on the treatment. I was not aware how much water I am supposed to be drinking until i read this thread. Not that i would have been able to for the past two days. But will start increasing it immediately. I am very nervous because this is the first treatment I have been through. Right now I just want the pain to go away so I can sleep thru the night, or at least try. I am hoping I don't end up in the er. But if I do, is there anything I need to be careful of? I know they would need to know that i am on it, but am I limited to what they can do for me. I dont want to stop treatment but I want to start feeling better.

bassman55 · « **Reply #2217 on:** May 29, 2015, 11:11:30 pm »

Thanx so much Deb !!!! I'll be one happy guy the day "the itch" ends,I'm really happy to hear you rid of the itch,good lord it sux!....I think I better stick with american women ;~)

bassman55 · « **Reply #2218 on:** May 29, 2015, 11:18:25 pm »

Hi Livinginthemoment....Yes....drink lots of water! It seems to work for me,I don't think I've ever been as hydrated as I am now! : ) Hang in there,think positive,try to stay busy with things in your life to take you're mind off of the treatment...just my 2 cents Good Luck!!!!

angelina · « **Reply #2219 on:** May 29, 2015, 11:24:06 pm »

Thank you David and Katie. The thing is that I am not in the states and my hepatologist doesn't seem to have any experience with Hepatitis c. And there r not many around who have... Mine was going to the internet looking for all the answers and when I asked him some advises from his experience - the answer was as weird as "I am not putting experiments on my patients..." Ridiculous!

Please advice how can I contact Gilead from overseas?

KC · « **Reply #2220 on:** May 29, 2015, 11:46:45 pm »

I am down to 13 days to go before my 12 weeks are up with Harvoni. My first 5 were wonderful put the past couple weeks I came down with symptoms. Had to call my doc on Wed because I was really "out of it" when I say that I mean my brain just didn't seem to be working properly. I was very uptight anxious and very short tempered. My nurse expressed that some of this could be due to my high Ammonia levels. I haven't read anything about that issue on here, which surprises me. I am on a different med for the Ammonia levels and have been for a few months. If you research it, you will find it can effect the brain. My nurse thinks that was part of my problem with the anxiety/etc. I just thought I would bring the subject up in case others have the same issue.

Nurse also mentioned that just because I did so well for 5 weeks doesn't mean anything. EVERYONE is different. Some do better in the beginning, middle or end. I have been feeling better past couple days but look forward to getting off this stuff. It feels like it teases me with the symptoms: sometimes insomnia, fatigue, energy, headaches, muscle/bone pain. I never know from day to day how I will feel. Today I had tons of energy and it felt wonderful. Finding this to be some strange medicine but if it works it will be worth every minute. Good luck all!

KC

Philadelphia · « **Reply #2221 on:** May 29, 2015, 11:51:10 pm »

Where are you, Angelina? O/S access varies according to country.

Katie · « **Reply #2222 on:** May 29, 2015, 11:54:18 pm »

Quote from: angelina on May 29, 2015, 11:24:06 pm

Thank you David and Katie. The thing is that I am not in the states and my hepatologist doesn't seem to have any experience with Hepatitis c. And there r not many around who have... Mine was going to the internet looking for all the answers and when I asked him some advises from his experience - the answer was as weird as "I am not putting experiments on my patients..." Ridiculous!

Please advice how can I contact Gilead from overseas?

Angelina, This is the site for Gilead Support Services. I'm not sure if it is for international calls. If not, maybe Google it. Some folks on the forum have gotten good information from them and they have nurses available to speak with you too. You'd have to call during the correct time frame. It would be midnight, Eastern time now...I think. I am Alaska Daylight Savings time. Good luck!

It seems you should take care of your problem and since you just began treatment, maybe it would be best to hold off until this gets taken care of. Talk to your doctor...or find another one! Hopefully Gilead can help.

http://www.gilead.com/responsibility/us-patient-access/support%20path%20for%20sovaldi%20and%20harvoni

Katie

angelina · « **Reply #2223 on:** May 30, 2015, 12:12:47 am »

Thank you Katie. I'll try to call them on Monday. I am in the Middle East. Very far...

I am used to have chronic sinusitis and its being bad last couple of years, now I think because of Hepatitis ...

I am half way during the treatment - end of week 4 out of 8 so probably won't stop...

I am just worried if this sinusitis/cold/fly won't jeopardize my treatment ... Its getting hard to be sick like that for 3 weeks... need to do something....

Best wishes to everyone!

TTSP · « **Reply #2224 on:** May 30, 2015, 12:14:29 am »

@livinginthrmoment I too have Menieres. Same with me. I had to wait till I could get it under control and start Harvoni. I'm 1b though. After 4 days on Harvoni I had aches and pains, and severe tinnitus with dizziness. I did not think I would make it.

It got a lot better shortly after that, came back briefly around week 7 or 8. Now a few days after EOT, all I have going on is the tinnitus. Undetected at 7 weeks, waiting now for EOT results. I feel pretty good. I'm able to do a lot more now than when I started.

@bassman I used to have some itching before treatment and my wife would scratch my back as I serenaded her with the original G.L. Crockett version of Scratch My Back! I'm a bluesman!

Best wishes to all!

I'm still confident.

Katie · « **Reply #2225 on:** May 30, 2015, 01:52:15 am »

Quote from: angelina on May 30, 2015, 12:12:47 am

Thank you Katie. I'll try to call them on Monday. I am in the Middle East. Very far...

I am used to have chronic sinusitis and its being bad last couple of years, now I think because of Hepatitis ...

I am half way during the treatment - end of week 4 out of 8 so probably won't stop...

I am just worried if this sinusitis/cold/fly won't jeopardize my treatment ... Its getting hard to be sick like that for 3 weeks... need to do something....

Best wishes to everyone!

Opps...I confused your health issues with someone else I read today. Sorry about that so I am going to copy that to her. I really need to pay more attention Ya...don't quit now, you are half way home Flushing your sinuses out with a mild salt water solution can really help. I've had that same problem a few years back. However if it settles in your lungs have it checked out. Hope you get some answers to your issues!

Katie

Katie · « **Reply #2226 on:** May 30, 2015, 02:00:56 am »

Quote from: livinginthemoment on May 29, 2015, 10:37:21 pm

So i have had hep c for quite some time now. My doctor has always been on top of the tests and kept telling me of all the meds coming. And finally there is Harvoni. My insurance had sent me a letter at the beginning of the year but I was dealing with other health issues, Meniere's disease. So now that is being "controlled" and I knew it was time. So I made the appt and as soon as I opened my mouth we both said Harvoni together. Got approved in 2 days and the meds were delivered on this past Wednesday. I started on Thursday morning. Problem is i have been having pain in my lower abdomen since Wed night (before even starting Harvoni). And now I am dealing with what my doc believes is a ruptured ovarian cyst and the fatigue and mild headache. I am hoping the cyst goes away and I can start to focus on the treatment. I was not aware how much water I am supposed to be drinking until i read this thread. Not that i would have been able to for the past two days. But will start increasing it immediately. I am very nervous because this is the first treatment I have been through. Right now I just want the pain to go away so I can sleep thru the night, or at least try. I am hoping I don't end up in the er. But if I do, is there anything I need to be careful of? I know they would need to know that i am on it, but am I limited to what they can do for me. I dont want to stop treatment but I want to start feeling better.

It seems you should take care of your problem and since you just began treatment, maybe it would be best to hold off until this gets taken care of. Talk to your doctor to see what your options are and how serious this ovarian cyst is and if it is OK to not deal with it for the duration of your Harvoni treatment.

I have no experience with that type of issue but why tax your system fighting an additional problem. If it were me, I'd want to do one thing at a time to give both the attention they need to get better. Just my opinion, especially since you just began Harvoni. Better to stop now than half way through if your problem gets worse.

Good luck to you!

Katie

joelyzabeth · « **Reply #2227 on:** May 30, 2015, 05:46:08 am »

Quote from: KimInTheForest on May 22, 2015, 01:25:18 am

Hi joelyzabeth, and welcome to the forums!

I am on Day 17 of Harvoni+Ribavirin. I have not had much problems with sides so far - all minor and manageable. But I am experiencing major appetite suppression while on treatment and have been losing weight because of it (and I don't have any weight to lose). Some of my fave foods that used to be my go-to foods when I need to put weight back on do not appeal at all right now. Pasta, for example. So I have had to become a lot more diligent about eating whatever I can (so long as it is healthy, no junk food) whenever I can get it down.

Other than that, my experience has been pretty positive so far. I have actually had an increase in energy, mood, & mental functioning. I thought it was the Harvoni. But it could just be ME with the virus getting knocked down so quickly. These new drugs work remarkably quickly. My starting viral load was nearly 9 million. And after just 7 days it was down to 130! Wow! And my liver enzymes are back in the normal range for the first time in 20 years. Lots of people are reporting results like this. This is typical for Harvoni.

Have you received any results of your labs yet, joelyzabeth? it is very encouraging to see those numbers falling and makes any side effects seem worth it.

wishing you the best on your journey, with cure at end for you.

Kim

Good morning Kim, I apologize for the late response. As I initially reaponsed to your post when you first sent it but for some reason I couldn't post it. Got frustrated and said the heck with it. Then I got sick wirh the flu and I tell you that really took me for a ride especially with rhw Harvoni side effects I was experiencing as well.

I didn't want your post to go unanswered so then I had to find it, lol another journey. I go for my labs on June 2. I'm very excited to see how the numbers will play themselves out. I've been drinking more fluids not exactly water all the time but I know I should be doing better than that. I drink a lot of orange juice so I switch between the two.

Although my numbers are relatively low to begin with I am very anxious to see how the Harvoni is working, especially with my other medications. I had my lab date moved up so I can go out of town to my little sister's HS graduation. So I am assuming I should have my results when I return. Thanks for the response to my initial post, for the first time dealing with my HCV I actually felt alone. I guess it was starting a new treatment after 15 years w/o it and just focusing on my other health issues. The side effects really threw me off but they've seemed to have subsided some and become more manageable. Once again thank you for your response, it was very much appreciated.

J

livinginthemoment · « **Reply #2228 on:** May 30, 2015, 06:10:36 am »

Thank you all. I woke up this morning with 95% of the pain gone. I get cysts normally but havent had one since my tubes got tied. That was a major concern i had. But i feel sooo much better now. Now to focus on my treatment. Is it normal to have absolutely no appetite? All i want is water which I have increased but i don't want anything to eat. I havent eaten anything since Thursday. Not that I dont want to but i have no desire to eat. And yes I will force myself to eat even if its protein shakes. As I stated I am new to all the treatment so I have no idea what can happen. I plan on calling Gilead to find out a few things after reading about tinnitus that some peoplw get. I already have that with the Meniere's. The only thing that gets me down is the vertigo attacks. I am so thankful to have found this forum.

bassman55 · « **Reply #2229 on:** May 30, 2015, 07:09:34 am »

livinginthemoment...I've gained 6 lbs,eating very good now! And happy about it too!

joelyzabeth · « **Reply #2230 on:** May 30, 2015, 08:20:00 am »

Quote from: livinginthemoment on May 30, 2015, 06:10:36 am

Thank you all. I woke up this morning with 95% of the pain gone. I get cysts normally but havent had one since my tubes got tied. That was a major concern i had. But i feel sooo much better now. Now to focus on my treatment. Is it normal to have absolutely no appetite? All i want is water which I have increased but i don't want anything to eat. I havent eaten anything since Thursday. Not that I dont want to but i have no desire to eat. And yes I will force myself to eat even if its protein shakes. As I stated I am new to all the treatment so I have no idea what can happen. I plan on calling Gilead to find out a few things after reading about tinnitus that some peoplw get. I already have that with the Meniere's. The only thing that gets me down is the vertigo attacks. I am so thankful to have found this forum.

GM livinginthemoment!
Good to hear the issue with the cysts has been resolved and you are feeling better. I too had such issues to contend with years ago and so did my daughter when she was a teenager.

I've been on treatment 3 weeks now and I am just regaining my appetite yet. Not as completely as I am use to eating but there has been an increase. I still find eating in the morning difficult sometimes but usually my appetite will kick in around the afternoon and then I stay hungry. If I do have an appetite in the morning than usually it'll take longer before I am hungry again.

I wish I could give you info on the other conditions you stated but I have had no experience or knowledge with them. I do suffer from anxiety attacks but that was an issue before treatment began, just like my headaches.

I am new to the forum just as you are so I say greetings ro you [I know its delayed, lol ] and that we all can help watch each other as we go through our Hep C treatments together and provide our friendships and support.

J

livinginthemoment · « **Reply #2231 on:** May 30, 2015, 12:47:23 pm »

Quote from: bassman55 on May 30, 2015, 07:09:34 am

livinginthemoment...I've gained 6 lbs,eating very good now! And happy about it too!

That is wonderful news bassman55!!!

livinginthemoment · « **Reply #2232 on:** May 30, 2015, 12:50:54 pm »

Quote from: joelyzabeth on May 30, 2015, 08:20:00 am

GM livinginthemoment!
Good to hear the issue with the cysts has been resolved and you are feeling better. I too had such issues to contend with years ago and so did my daughter when she was a teenager.

I've been on treatment 3 weeks now and I am just regaining my appetite yet. Not as completely as I am use to eating but there has been an increase. I still find eating in the morning difficult sometimes but usually my appetite will kick in around the afternoon and then I stay hungry. If I do have an appetite in the morning than usually it'll take longer before I am hungry again.

I wish I could give you info on the other conditions you stated but I have had no experience or knowledge with them. I do suffer from anxiety attacks but that was an issue before treatment began, just like my headaches.

I am new to the forum just as you are so I say greetings ro you [I know its delayed, lol ] and that we all can help watch each other as we go through our Hep C treatments together and provide our friendships and support.

J

That is great about the eating. I think I just feel like I am doing this alone which I know I'm not. But the treatment is really in our hands. I am so used to doctors doing stuff...lots of family members with cancer. So at times I feel like I am clueless as to what is going on and what I am to expect. It feels so good to know other people and not be alone in this journey.

joelyzabeth · « **Reply #2233 on:** May 30, 2015, 01:05:35 pm »

Quote from: livinginthemoment on May 30, 2015, 12:50:54 pm

That is great about the eating. I think I just feel like I am doing this alone which I know I'm not. But the treatment is really in our hands. I am so used to doctors doing stuff...lots of family members with cancer. So at times I feel like I am clueless as to what is going on and what I am to expect. It feels so good to know other people and not be alone in this journey.

No you are not alone, I kind of felt that way too at first when I started treatment until I found this forum and saw others who are going through the same or similar experiences as myself. It's always good knowing there is such a huge support system out here foe us.

J

livinginthemoment · « **Reply #2234 on:** May 30, 2015, 05:26:12 pm »

Uggghhh. I was prescribed IBS meds by my gastro who os also my hepc doc. Come to find out i cant take the IBS meds. I havent had to take them until now. Went to check. And a big old no because it decreases the effectiveness of the harvoni. Now I'm terrified to eat outside of my own home. I know its temporary but that was my go to pill for my stomach issues. Was not expecting that. :/

joelyzabeth · « **Reply #2235 on:** May 30, 2015, 06:14:05 pm »

Quote from: livinginthemoment on May 30, 2015, 05:26:12 pm

Uggghhh. I was prescribed IBS meds by my gastro who os also my hepc doc. Come to find out i cant take the IBS meds. I havent had to take them until now. Went to check. And a big old no because it decreases the effectiveness of the harvoni. Now I'm terrified to eat outside of my own home. I know its temporary but that was my go to pill for my stomach issues. Was not expecting that. :/

I decided against having my GI Dr treat me for my Hep C. He treated me for my stomach issues and I suffered all last summer with gastritis and other issues only to find out in October I needed my gallbladder removed and then it was another 5 months before all of my stomach issues subsided. My ID Dr and I had discussed my Hep C tx while I was going through the stomach issues and we both agreed it would be better to wait for me to start Hep C tx.

I can only imagine the disappointment you must feel knowing your medication conflicts. I discussed that with my ID before tx and we worked around my conflict for my stomach medication. Is there any chance that you can take the medication if it's not at the same time as thw Harvoni?

Dr should have looked into that before prescribing anything. I hope you can work around this conflict and have a smooth transition for tx of both conditions. I hear IBS is uncomfortable and we already know Hep C tx is not easy.

J

Keanu2015 · « **Reply #2236 on:** May 31, 2015, 08:55:30 am »

Good morning everyone!
Hi Meg, it was great hearing from you as well! I'm happy to hear your tinnitus and fatigue are letting up! awesome

I see you made EOT 5 days after I did. Congrats! did you get your blood work or is your doc making you wait? I wanted to report to everyone something very significant that has been happening to me just the last few days. I have been trying to exercise as much as possible throughout treatment and beyond as I wanted to lose weight and especially fat to aid my liver. Of course it needs to aid me in this endeavor! anyway that has been tough. It has not seemingly been able to burn much fat at all hardly any due to its weakened state I believe. Joints and breathing haven't been cooperative either ugh. Well anyway, here I am more than 2 weeks beyond my zero EOT result and something amazing is happening. I'm able to exercise longer with almost no pain in my previously damaged knee, my liver is not uncomfortable and when I lift I can get a few more reps. After plateauing for like a month at 225, I have suddenly lost 3 lbs to 222. I think it's starting to take command of my fat burn again but what is amazing is that I'm not overly tired as a result of making gains and feel I have more energy to close down the intervals of exercises. Early on I heard folks taking about skin hair and nails showing improvement. Ie. skin clearing up, nails and hair stronger/healthier. I'm feeling better circulation. Blood pressure is dropping down to closer to healthy normal. (it was a bit high for a while on the meds). I don't even have pain any more. Barely some discomfort on occasion. Anyway, I just wanted to share with all of you. I hope everyone is doing well today. The miracle is coming for all of us. Stay strong! God bless you all! ~K

joelyzabeth · « **Reply #2237 on:** May 31, 2015, 10:53:38 am »

Congratulations Keanu2015!

Many blessings to you!

J

kingharry · « **Reply #2238 on:** May 31, 2015, 11:40:47 am »

Day 12 on Harvoni. Early on, through day 8, I noticed headaches, diminished appetite and minor diarrhea. Those side effects have NOT continued. Still abit fatigued but not enough to interfere with daily activities. MOST important----drink lots of water, 1/2 your weight in ounces. Cheers, friends.

joelyzabeth · « **Reply #2239 on:** June 01, 2015, 02:21:11 am »

Cheers KingHarry and God Bless. Your update sounds so much better than mine. I began week 4 on Sunday 5/31/15. Been through quite a,few side effects already except no headaches. I'm normally a headache sufferer w/o Harvoni but haven't had any sunce I've been on it.

I have a hard time drinking a lot of water. I weigh 178lb, that would be a lot of water to consume and I already use the little girl's room a lot at night disrupting my sleep.

Anywho keep up the hard work, best of blessings to you.

J

angelina · « **Reply #2240 on:** June 01, 2015, 05:40:19 am »

Joelyzabeth!

I experience exactly the same symptoms as you. I am usual migraine sufferer but during first month on Harvoni didn't have any!!! Only some headaches I think due to sinusitis. Very hard to drink lots of water, trying as much as I can. Fatigue came several times for few days.
The back pain though is there all the time. I didn't have that before.

And I wish I lost my appetite a bit...Need to loose some kgs...

Congratulations to everyone with a good news!

Best cure wishes to everyone!

kaemicha · « **Reply #2241 on:** June 01, 2015, 03:36:25 pm »

Quote from: chevy333 on May 28, 2015, 02:46:07 pm

yes, i have, no relief, i just got off the phone with liver dr. and she told me ,we dont have much choice but to quit treatment and hope the virus doesnt come back, i was undetected at 4 week and i got 12 days to go to make 8 weeks, i must be weird, she told me out of 170 patients on harvoni, im the only ONE, with severe migranes everyday, what great odds da!, so im gonna try to go 12 more days, i dont know if i can, so thumbs up!,,,,,,,,,,,,,,,terry

Chevy, people here probably won't like this but my doctor gave me Vicodin. It helped! I stopped taking it, this last month of my treatment but I don't know how I would have done it without it.

One day to go for me and I am done with my 3 month treatment on Harvoni.

Hang in there, Chevy. I did when I was sick and in Paris. One more week..one more week..you have less than that to go!

Keanu2015 · « **Reply #2242 on:** June 01, 2015, 05:13:54 pm »

Hello everyone!
Congrats on reaching EOT kaemicha! MUCH better days are on the way! Chevy... hang in there buddy! try like hell to finish your tx. It is really amazing how well you will start feeling when you reach EOT. Thanks for your congrats Joely! One day at a time still...just like you all! Hang in there... You will improve!
Hope everyone is feeling good today

~K

kaemicha · « **Reply #2243 on:** June 01, 2015, 05:40:40 pm »

Thanks, Keanu, and I wanted to add to Chevy,
I wanted to quit - was even told to quit Harvoni, last week when I just had one week to go but the week got better.
Hang in there. Today, I did indulge in a benedryl and ibyphrophen to keep headache at bay but my headache is sinus/allergies.

Again, all good luck to all!!

bassman55 · « **Reply #2244 on:** June 01, 2015, 08:32:42 pm »

I hope I'm not jinxing myself BUT...29 days in treatment and my itching has eased a bit(crossing my fingers! ) Went to an orthopedic today and MIGHT have a little tear in my rotator cuff(shoulder) and he was ready to give me a shot in it ,but I reminded him I was in treatment,so he backed down and told me to find out if it would effect the Harvoni?

Jean123 · « **Reply #2245 on:** June 02, 2015, 10:38:41 am »

Hi folks,
New on here and finding the site hard to navigate, but hopefully this will post.
I'm one of those uncommon Genotype 4's- would love to hear about Harvoni experience with similar GT. I'm on day 27 of 12 week treatment. All in all, pretty easy. Some fatigue that comes and goes, but still able to work long hours.
Huge improvement over the horrific Interferon/Riba treatment I tried years ago.
I've noticed that the ever present nagging liver pain has abated as of week two of treatment. Having first bloodwork done in two days, feeling hopeful

hepcsincebirth · « **Reply #2246 on:** June 02, 2015, 02:27:54 pm »

I am new here and wanted to post my experience on Harvoni. I am 42 and found out I have HCV (1b) in 2002. The only time I could have gotten HCV was at birth (different country where needles were reused.) Over the past 13 years my liver enzymes were always elevated (2-3x normal), and my viral load at diagnosis was 800k and has been 150k for the last 7 or 8 years. My Fibrosure went from f1 to f1-f2 to f2 with each jump taking about 4 years and I have always been A3 for inflammatory activity. I have been offered treatment several times, but decided to wait for the newer interferon/ribavirin free drugs. The insurance company approved Harvoni within a few days, and I started the 8 week treatment at the end of march. I kept a journal of any side effects I experienced. My 4 and 8 week labs were undetected with completely normal enzymes. I am waiting for the SVR12 test in august.

3/31/2015: Package arrived at 10:30am, debated on when to start taking the pills. Decided on 7pm. Took pill 1 and started to feel head fullness after 20 minutes, which changed to light headedness. Effect wore off after about an hour. Blood pressure normal (110/72)

4/1/2015: Got a mild tension headache at 6:45pm (started at 6:00pm but was initially very light, felt it on both sides of head, got stronger on left side, then equalized to right side) lasted for about 20 minutes. Took pill 2 at 7:00pm. Headache gone, light headed feeling much milder than yesterday. Blood pressure normal. Went to sleep at 9:30pm, woke up at 12:30am to use restroom, was in and out of sleep the rest of the night.

4/2/2015: Woke up with some head fullness, started to dissipate at 9:30am, but never went away. Started to get a mild tension headache at about 12:30pm. Headache dissipated after I ate lunch, and head fullness also dissipated, but still slightly there. Took pill 3, light headed feeling lasted about 10 minutes. Blood pressure normal.

After 3 pills, I hope my body is getting used to the medication. The affect of the head fullness is mainly on the sides of my head, and around my cheek bones. It feels like novacaine. 3 down, 53 to go.

4/3/2015-4/9/2015: Very minor head fullness 20 minutes after taking pill. Dissipates after 15 minutes.

4/10/2015-5/11/2015: No side effects

5/12/2015-5/18/2015: Very minor head fullness 20 minutes after taking pill. Dissipates after 15 minutes.

5/18/2015-EOT: No side effects

I tried to take the pill at exactly the same time each day. I drank a lot (at least 80-90oz each day,) and was very careful with what I ate. I cut out all sugar, all juices, anything fried, and red meat. I mostly ate vegetables, fruits, nuts, fish and chicken. I made sure I didn't eat anything for an hour before and an hour after taking the pill. Over the 2 months I lost 15 pounds.

After my positive experience, I am glad I waited. Hopefully it works.

TTSP · « **Reply #2247 on:** June 02, 2015, 02:32:26 pm »

Greetings, and welcome to everyone just starting treatment!
I just got my end of treatment results! Good news

13 weeks after 12 week treatment on Harvoni:
Viral load still 15 undetectable
ALT 24 AST 28
Thyroid Normal
B12 Normal
Glucose normal, but 98 which is a concern for me (family history of diabetes)
Everything else is within acceptable range, given where I started.

Some side notes:
I have Meniere's also I have been on a low sodium, low sugar, and lots of water long before I started Harvoni. At the beginning of Harvoni treatment, I could barely maintain my balance to do anything. Before 1 month was up, I was getting around, doing some light household chores, and walking. After 6 weeks in, I started using the treadmill and worked my way up to 3.3 mph for 40 min.

I am 1b, 4.0 cirrhosis, treatment naive So of course I will have to follow up with 12 week after end of trial. Also keep tabs on the condition of my liver, and watch for cancer. All in all a MAJOR improvement in my life! I do still have tinnitus, since I've had that for many years (Meneire's), I can handle that for now. Maybe by the time I clear the Hep C hurdle, the latest in Meniere's treatment will be ready. It's currently in Stage 1 trials, with several different drug companies.

I can't and won't give advice to anyone, other than pester the heck out of insurance, doctors, and Gilead. Most importantly research your personal situation. Or get someone to do it for you.

I will check in and see how everyone is doing from time to time. God bless you all.

Peace be with you!

hepcsincebirth · « **Reply #2248 on:** June 02, 2015, 03:11:09 pm »

I also did some research on how harvoni works, and the drugs it is comprised of. I don't have a virology background so I tried the best I could to understand what is happening. The 2 drugs in harvoni are ledipasvir and sofosbuvir (sovaldi). The sovaldi works on the virus in the blood and bonds to it so it can not infect new liver cells. The ledipasvir works in the liver cells themselves and stops the formation of new viruses. I think the reason Sovaldi can't work alone is that while it stops new liver cells from being infected, the already infected cells keep producing new virus. Eventually, the sovaldi would eradicate the virus, but at $1000 a pill, it would take too long and be too costly, plus their might be side effects from long term use. From what I read, the sovaldi doesn't cause resistance if doses are missed, but the ledipasvir can (this is why people are retreated with sovaldi and a new drug after prior treatments with sovaldi failed.)

I also read a lot about reinfecting yourself. While solvaldi is in your blood, any untreated hcv virus that gets into your bloodstream from before treatment is crippled. After solvaldi is out of your system, it makes sense that you could possibly reinfect yourself, but I think the chances are low and get even lower the longer you stay on harvoni. Since for most people, the virus is basically gone from your blood within several weeks, you would need a pre-treated sample of blood that survived for the duration of the treatment and then entered your bloodstream. The virus can live for months in optimal conditions (in blood samples, in ideal temperature, humidity, etc,) but people won't normally inject infected stored blood into their bodies after treatment. The virus can live for 3 or 4 weeks on a solid surface, but the chances after that time of reinfection are small. I think as long as you take normal precautions (the same ones you took to not infect others,) you will be fine. I suggest you change your toothbrush, razors, and clippers several times during treatment. They are inexpensive and the piece of mind is worth the $20 it will cost. The virus lives for a much shorter period on porous surfaces, clothing, etc. The overall chances of getting HCV from routes other than needles, transfusions, and tattoos are very small. It is not an easy disease to catch, and the same holds for reinfection.

I think there are 3 primary reasons for relapse:
1) a mutation in the HCV virus that makes the drug less effective (I think it reduces the SVR rate by 15-20%),
2) treatment that is too short to cripple the virus in the liver cells (especially if the liver is damaged or scarred since it can't process the medication as effectively)
3) not sticking to the regimen (including missing doses, repeatedly taking the pills at different times of the day, stopping early, taking drugs that interfere with harvoni, etc.)

The good news if you do relapse is that the drugs are only getting better. I remember 12 or 13 years ago someone called Dr.Dean Edell (radio talk show doctor,) about HCV and he said that within 20 years, the disease would be clinical. With these new drugs, he was 100% correct. Each generation of treatment is getting shorter and with fewer side effects.

livinginthemoment · « **Reply #2249 on:** June 02, 2015, 06:01:45 pm »

Day 6 and my side effects have started to go away. My stomach is still an issue but I got a phone call from Avella specialty pharmacy and they logged it in and will report it. I have been drinking tons of water. Cut out caffeine. No more sugar. And walking the dog for 2miles. No more fatigue during the day and actually slept through the night last night. I feel pretty confident that the meds just needed to get used to being in my system. My body is over sensitive to medication side effect. I get them all. But as of right now I feel wonderful. I have even been told by a coworker that has no idea what I am going through said that I look so radiant today. I feel like I'm glowing. I can't wait to get my blood drawn to see what my levels are at. Peace and love to everyone going through our battle.

TTSP · « **Reply #2250 on:** June 02, 2015, 07:46:24 pm »

@hepcsincebirth Well said. Congrats and best wishes!

@livinginthemoment Happy that things are getting better! Best wishes on your treatment.

angelina · « **Reply #2251 on:** June 03, 2015, 08:50:35 am »

Hepsincebirth!

Welcome and thank you for such an informative posts!
I didn't know its not good to drink juices. I drink lots of fresh orange juice as I am very prone for cold/flue. Need lots of vitamine C.

I agree with most of your conclusions. But still very strange that virus goes undetected and then comes back... So u have undetected at EOT and think u r cured and 4 weeks later- relapse. What does it relapse from if there was no viruses left?...

Very strange and unpredictable disease!
Best cure wishes to everyone.

dogdave · « **Reply #2252 on:** June 03, 2015, 09:49:29 am »

Hi everyone,

My 8 week labs were given to me today and it was UNDETECTED. I'll have completed 10 weeks as of tomorrow and have 14 to go. I hope all of you will get cured. I know that this is a marker, but after fighting this for 45 years there is a light at the end of the tunnel!

NYC10002 · « **Reply #2253 on:** June 03, 2015, 01:17:37 pm »

I am in my 3rd week of Harvoni. OMG the fatigue is getting me big time. All I want to do is sleep. I'm trying to fight my way through it. My doc yesterday said to take it before bedtime and with food. And through this forum have learned I need to drink a lot of water, which is always good. Reading your posts has really helped. Got my blood drawn yesterday and keeping my fingers crossed that my viral load is starting to go down.

bassman55 · « **Reply #2254 on:** June 03, 2015, 01:40:49 pm »

Well...I'm 5 weeks in with Harvoni,I go see the Doc on the 11th,and I guess see where we're at numbers wise. The itch is back,I figured I jinxed myself when I posted a couple days ago that it was easing up.I learned from everyone here WATER....WATER......so important! I take my pill 'round 7AM every day and I'm good. I also don't have to go to work like many,I'm "retired/disabilty" so I can crash whenever I want,and it's been no disruption in my life doing treatment.....7 more weeks to go of the 12.

SunIsOut · « **Reply #2255 on:** June 03, 2015, 02:23:09 pm »

All is well here! I got my garden and sailboat going and have been enjoying the spring. I go this friday for labs and about 2 weeks after EOT.

I have a lot of energy and have been very productive. I have to build a new paver wall around the roses by the gazebo in the pic below and that will be my last gardening project for the year. I have a second sailboat I bought as an investment and will do repairs on it so I can sell it.

I hope everyone does well and was sad to hear that migraines had stopped someones treatment. I did not have any new side effects resulting from this treatment.

Katie · « **Reply #2256 on:** June 03, 2015, 03:04:37 pm »

Hi Sunis out! Your yard is spectacular and if you'd like to sail to Ketchikan, I could sure use some help!

Good hearing from you and Happy you are doing so well. I am at about 11 weeks post treatment, SVR8 and get tested again for post treatment week 16. I lost all of my energy completing treatment as many others as well. I am not "suffering" like some, just really bad fatigue and no endurance, so your posts lift me up as I want to be like you!

On treatment I was a little cyclone just knocking my projects off the To Do List like crazy, and now with the good weather...there's nothing left. I am hopeful that this too shall pass so am remaining positive. I find it quite interesting how this treatment differs so much from person to person.

We are all on this journey and life is wonderful (((HUGS)))) to you and wishing you good lab results.

Enjoy the salt air and the beauty you have created and all that is around you!

Katie

Katie · « **Reply #2257 on:** June 03, 2015, 03:19:45 pm »

Congratulations to all of you on treatment and those of you finishing up. Hang in there and be kind to yourself.

There will be relapses as nothing is 100% however new drugs are on the way and they finally figured out how to destroy this alien parasitic monster!

Angelina: The tests for your viral load are not sensitive enough to count every single virus and they could very well be missed in the blood draw. Remember, they replicate in liver tissue, so you can come back Undetected during treatment and there could be some lurking somewhere that the test missed. That is the reason the post treatment tests are needed to see if there are any left to replicate. Since they replicate exponentially, there will be enough for the test to pick up and count after that period. Evidently they have determined the virus to be incapable of replicating after a 12 week period so that is like their life span to be viable. They also do a followup at 24 weeks to make sure, so that is when I will feel confident that I am free of HepC for good. It's a waiting game, and that is difficult, but it is well worth it. Everyone is different and this is a new drug, so we'll have to see how it all works out for long lasting results. In my case, I was detected <15 at EOT but 8 weeks later was Undetected. My thought on that was there may have been fragments of the virus which was picked up, but they were not replicating and so I cleared. Harvoni does not KILL the virus, but prevents it's replicating process so the fragment theory makes sense to me.

So..Good luck to everyone. It's exciting to be part of this breakthrough and eventually this devastating disease will be wiped out altogether. Enjoy your summer!

Katie

pandaman · « **Reply #2258 on:** June 03, 2015, 04:03:33 pm »

Hi everyone,

1st post...

62 years old and, most likely got infected in the early 80's. Registered today because I got the call that I've been approved for 8 weeks of Harvoni.

I was diagnosed about 94 with non A non B with antibodies to type A.

All my roommates and I got type A in college. (early 70's) I remember back then it was called infectious hepatitis, there was no alphabet of hep viruses to my knowledge. About a weeks of bed rest and I was over it.

I had a biopsy done in 2005 and it showed fibrosis stage 2. The fibrotest just recently done shows fibrosis stage 1-2. My doctor can't answer why my fibrosis
shows an improvement after 10 years.

My ALT and AST levels are in normal range and blood platelets are healthy.
My viral load is 8,000.

My doc tells me to keep doing whatever it is I'm doing because my 2015 labs are
much better than my 2005 labs.

He submitted to the insurance company a couple of days ago and told me to expect to be rejected. He claims to have patients with stage 4 being denied.

Being that I just got approval, I don't know when I will actually start. I want to thank everyone here for sharing their experiences.

dragonslayer · « **Reply #2259 on:** June 03, 2015, 05:12:11 pm »

>>I had a biopsy done in 2005 and it showed fibrosis stage 2. The fibrotest just recently done shows fibrosis stage 1-2. My doctor can't answer why my fibrosis
shows an improvement after 10 years.<<

Have to remember that biopsy is still the 'gold standard', and fibroscan/fibrotest/fibrosure are generally not as accurate.

That's a tiny viral load youve got there.. Congrats on your approval; 8 wks?

2rivers · « **Reply #2260 on:** June 03, 2015, 11:44:54 pm »

Quote

Please keep us up on how you do because the correlation between the level of physical activity while on treatment and the relative levels of liver damage is good to know for those who consider working hard physically while on treatment! Certainly this is more anecdotal evidence than scientific but the studies of Harvoni give no indication whatsoever as how people actually react to the changes that happen to their systems.

Hi Mugwump. I'm happy to report that after 9 days of Harvoni I'm still able to keep up with my normal routine - playing tennis 5 times a week, biking, yardwork, etc. I can tell that I'm "on something", but the side fx are certainly minimal. I had a slight headache the 1st few days, but nothing now. I seem to be sleeping normally (I take my pill at 9 PM) and my energy levels are mostly normal. The only thing I have noticed is that by the 3rd set of tennis I lose my focus a bit and get slightly fatigued.

It seems a little weird that the little pill that I set on the coffee table after supper (so I won't forget) is the same as stacking 12 $100 bills on the table! I'm covered for the 1st eight weeks, other than my deductible, but I'll have to pay the last 4 weeks myself. Momentum Insurance will cover 20% of the last 4 weeks, however, it's still going to set me back about $30k. If it works, and I'm optimistic that it will, it will be well worth it.

My viral load at the start of tx was 2.5 million and fibrosis was stage 3. I've probably been infected for 45 years...

Katie · « **Reply #2261 on:** June 04, 2015, 01:12:00 am »

2rivers: You might want to check with Gilead as several have gotten help with their treatments through them. Doesn't hurt to check. Good luck to you and glad to hear things are going well.

Katie

ponygirl · « **Reply #2262 on:** June 04, 2015, 09:47:52 am »

Hello world. I took my 3 month blood draw last week and on my (65th) birthday I got results that the virus is Not Detected. 12 more weeks to go but I could not have gotten a better present (thanks Gilead).

About side effects; Since I have been off the Ribavirin for 1 month my only side effects are sleep disruption, higher BP and pulse rate. I had one headache in three months. Some minor tachycardia and arrhythmia episodes but it was much worse when I was on Harvoni AND Ribavirin.

For those who have been following my posts; The Ribavirin side effects were so bad that I had severe depressive symptoms, dry mouth, cough, erratic heart beats on a daily basis.. I had to take off work for a week to get those symptoms under control by decreasing and then stopping the Ribavirin. The side effects from the Ribavirin were so bad that I am still, a month later, being investigated for violation of the State Employee drug policy. (Being under the influence of any medication, in this case Ribavirin, that may impact job performance), so I will see where that ends up in the near future.

Worst case scenario: I am virus free and lose my job, but as of 5/31/15, I qualify for my pension. If I lose my medical, I will just apply for Medicare through my current employer to finish treatment and take my SS and pension until I find another job.

ponygirl · « **Reply #2263 on:** June 04, 2015, 09:52:19 am »

PS. It did not make ay difference if I take the Harvoni in the am or pm, I still wake up frequently at night and sometimes can't sleep at all. And have weird dreams. Like tonight...been up all night. Not very healthy for an old lady.

2rivers · « **Reply #2264 on:** June 04, 2015, 10:46:01 am »

Quote

2rivers: You might want to check with Gilead as several have gotten help with their treatments through them. Doesn't hurt to check. Good luck to you and glad to hear things are going well.

Katie

Thanks Katie. Just to let you know, Momentum Insurance is actually Gilead (their insurance arm) and they are covering 20% of my final 4 weeks. My provincial pharmacare plan covers the first 8 weeks, but I had to pay a $10k deductible. Still well worth it, and less than half the cost if I would have had to pay the whole thing out-of-pocket.

2rivers · « **Reply #2265 on:** June 04, 2015, 10:51:01 am »

Quote

For those who have been following my posts; The Ribavirin side effects were so bad that I had severe depressive symptoms, dry mouth, cough, erratic heart beats on a daily basis.. I had to take off work for a week to get those symptoms under control by decreasing and then stopping the Ribavirin.

Hi Ponygirl. I'm just curious - why did you have to take the Ribaviran in addition to the Harvoni? Sorry to hear about the nasty side fx.

housefire · « **Reply #2266 on:** June 04, 2015, 04:25:20 pm »

Hi everyone. This is my first post. I started Harvoni 4 days ago. Minor side effects at this point. Mostly a chemical taste in my mouth. Some body aches, but no big deal. Advil knocks it out. I'm 65 and have had the Dragon for about 44 years. VL is 900K. Fibrosis F4. I hope as my body adjusts to the Harvoni, the side effects go away. Thanks for letting me chime in. Any thought. Please advise...

ponygirl · « **Reply #2267 on:** June 05, 2015, 04:53:49 am »

2 rvers; 12 week Harvoni and Ribavirin OR 24 weeks of Harvoni only are the recommended TX for those of us who are non-responders to previous meds and have bridging fibrosis or cirrhosis. It costs the insurance companies about $90 thousand less to do the 12 week combination instead of 24 weeks of Harvoni. But the Ribavirin has multiple side effects.

Lynn K · « **Reply #2268 on:** June 05, 2015, 05:06:31 am »

I had 24 weeks of Harvoni and we added later 15 weeks of Ribavirin but I am a difficult case. Waiting for my 4 week post treatment viral load for treatment number 5 hoping this one did the job.

2rivers · « **Reply #2269 on:** June 05, 2015, 12:54:19 pm »

Quote

2 rvers; 12 week Harvoni and Ribavirin OR 24 weeks of Harvoni only are the recommended TX for those of us who are non-responders to previous meds and have bridging fibrosis or cirrhosis. It costs the insurance companies about $90 thousand less to do the 12 week combination instead of 24 weeks of Harvoni. But the Ribavirin has multiple side effects.

Ok, I see. Ribavirin is added for treatment non-responders. This is my first kick at treatment, hence the 12-week prescription for Harvoni alone. Here's hoping that this time the treatment will work for you.

Kelley · « **Reply #2270 on:** June 05, 2015, 02:13:09 pm »

On week 5 of 12 weeks treatment. Previous non responder to Interferon/Ribivarin. Still having fatigue, light nausea and some dizziness--like motion sickness, but had blood work done at 4 weeks and just found out today the Hep C virus is NOT detected. Continuing through the 12 weeks and then test again and at 24 weeks. This is a miracle and almost unbelievable !!!!!! Feeling very grateful and blessed today!!!!! Hope everyone is doing well!!!!

NYC10002 · « **Reply #2271 on:** June 05, 2015, 04:55:16 pm »

Hey all: I got my first blood test results yesterday and they came back undetectable. Unbelievable! I am over the moon. The blood was drawn after about 2 weeks of Harvoni. The fatigue and fogginess is still hitting me although it comes and goes. Been drinking a lot of water. Good luck to everyone. 9 weeks to go.

joelyzabeth · « **Reply #2272 on:** June 05, 2015, 11:28:19 pm »

Good Evening everyone!
Tomorrow I will be finishing up my first month on Harvoni.
Had my labs done on June 2 and hoping for positive results. I've had a hard time with drinking so much water but I think it's because it makes me go to the bathroom so much, especially at night.
I'm still dealing with slight nausea in the morning but I take my Reglan and that helps pretty quickly. I'm having energy issues I can go from full fledged ready to take on the world mode and then in .05 seconds I can't wait to get in my bed. That's what is driving me more crazy then anything. I haven't had many body aches lately and no headaches since I started Harvoni and I am a headache sufferer. So I am thanking my lucky stars with that issue. I get light headedness here and there but I think it has to do with my lack of appetite here and there. I do eat but sometimes I find it difficult. I take my Harvoni at 8am in the morning with no food as instructed by my doctor. I'm thinking maybe I should switch it to the evening. Maybe that might reduce some of the sx.

I take sleeping pills to help me sleep but I had that issue before Harvoni. It's good to see everyone getting through their regimine of Harvoni to get the end of the rainbow of success. And for those of you who have finished I congratulate you in your completion, you so rock!

For those of us making it day by day I am glad to have this support system to help me through it as I struggle everyday and I know I am not alone.

Through the Grace of God we will see this through the end together.

Happy healing as we pursue the cure!

Have a good night.

J~

ponygirl · « **Reply #2273 on:** June 06, 2015, 07:31:29 am »

Kelly, Me too. Previous non-responder with cirrhosis and undetectable a 12 weeks. WHOOP. I found out 2 hrs before my 65th birthday. 12 weeks left!!!!!

NYC10002 · « **Reply #2274 on:** June 06, 2015, 07:37:52 am »

Jolelybeth: I can so relate to the feeling good and then feeling like I need to lay down on the sidewalk and go to sleep right then and there. I am finishing up my 3rd week and actually last evening I felt pretty strong all evening. My hope is that this is a trend that will continue...fingers crossed. I'm also wondering if going to the gym is helping me to feel more awake and clearer. I've been suffering through fogginess with the fatigue. On the upside, I am so grateful that my tests came back undetectable. I am learning to push through the fatigue, not quite used to that yet.

You are a third done and soon you'll be half done and hopefully it'll all be downhill from there. Later this summer this will all be behind us and like I'm telling all my friends, I'll be doing an Irish jig to honor my Irish ancestors.

Have a great Saturday,
NYC

joelyzabeth · « **Reply #2275 on:** June 06, 2015, 08:19:54 am »

Quote from: NYC10002 on June 06, 2015, 07:37:52 am

Jolelybeth: I can so relate to the feeling good and then feeling like I need to lay down on the sidewalk and go to sleep right then and there. I am finishing up my 3rd week and actually last evening I felt pretty strong all evening. My hope is that this is a trend that will continue...fingers crossed. I'm also wondering if going to the gym is helping me to feel more awake and clearer. I've been suffering through fogginess with the fatigue. On the upside, I am so grateful that my tests came back undetectable. I am learning to push through the fatigue, not quite used to that yet.

You are a third done and soon you'll be half done and hopefully it'll all be downhill from there. Later this summer this will all be behind us and like I'm telling all my friends, I'll be doing an Irish jig to honor my Irish ancestors.

Have a great Saturday,
NYC

NYC I would love to go to the gym to work out. I just feel it might deplete what energy I do have. I know I'm 1/3rd there as my doctor just told me, lol. Are you sure you two don't know each other NYC? Lol. You said exactly what she said word for word. Looking forward to doing that Irish jig with ya NYC.

Fatigue is also another issue I fight with from time to time. Nit as bad as it was when I first started Harvoni but yesterday I was really tired after feeling I could do laundry and gardening then just lost my zap. Today I feel tired but it could be the rain but I gotta get moving today as I'm leaving for Virginia tomorrow and haven't even packed a toothbrush as of yet. I got a feeling going out of town for a few days will do me some good. Get out of the city surroundings and into some fresh country air.

I think I've written enough (my pain killer for my back kicked in)

Glad to continue making new friends.

J~

joelyzabeth · « **Reply #2276 on:** June 06, 2015, 08:28:32 am »

Quote from: SunIsOut on June 03, 2015, 02:23:09 pm

All is well here! I got my garden and sailboat going and have been enjoying the spring. I go this friday for labs and about 2 weeks after EOT.

I have a lot of energy and have been very productive. I have to build a new paver wall around the roses by the gazebo in the pic below and that will be my last gardening project for the year. I have a second sailboat I bought as an investment and will do repairs on it so I can sell it.

I hope everyone does well and was sad to hear that migraines had stopped someones treatment. I did not have any new side effects resulting from this treatment.

Sunisout all I wanna say is I want to be just like you when I grow up! I am so loving the yard and hope I could get mine even remotely like that! Keep on pushing through.

J~

KC · « **Reply #2277 on:** June 06, 2015, 09:56:02 am »

Good to hear everyone is doing ok with the side effects. I have 3 more days and looking forward to being done with the Harvoni. I have to say that "overall" I did pretty well except for about week 9 of the 12. I had a lot of side effects that week and it really brought me down. I do not know why except my doc says that is normal. The best thing I can offer is drink your WATER!!!!!! In my eyes that is the best thing to do for minimizing the sides.

I am feeling absolutely wonderful again this week. I have not suffered very much from fatigue, I have been just the opposite, full of energy and hyped (to the point of being on edge sometimes). I take my Harvoni before going to bed and I really believe that might help ward off some of those side effects as well. I know that I won't really know the true results until Sept. but my hopes are very high in beating this monster. As I keep saying "the waiting is the hardest part". I wish everyone the best, keep on keepin on....

KC

housefire · « **Reply #2278 on:** June 07, 2015, 07:12:27 am »

Quote from: housefire on June 04, 2015, 04:25:20 pm

Hi everyone. This is my first post. I started Harvoni 4 days ago. Minor side effects at this point. Mostly a chemical taste in my mouth. Some body aches, but no big deal. Advil knocks it out. I'm 65 and have had the Dragon for about 44 years. VL is 900K. Fibrosis F4. I hope as my body adjusts to the Harvoni, the side effects go away. Thanks for letting me chime in. Any thought. Please advise...

housefire · « **Reply #2279 on:** June 07, 2015, 07:23:34 am »

Update: On day 7 of Harvoni. The only side effect I have is the chemical taste in my mouth. Is anyone else experiencing this? Thanks...

KC · « **Reply #2280 on:** June 07, 2015, 09:31:18 am »

I have tasted it a few times but it goes away. I know it is nasty though. Be sure to drink your water!

KC

housefire · « **Reply #2281 on:** June 07, 2015, 10:03:42 am »

Thanks KC. I'm just trying to find the chicken that pooped in my mouth. He must be running around here somewhere.

Cute · « **Reply #2282 on:** June 08, 2015, 06:38:43 am »

Hi all,

Today, I have received mother's 10 week blood work. So, ALT is still OK. But AST a little bit elevated and equals 37 (the norm is 14-36).
AST, the Platelet count, Insulin and Albumin, all of them, are worrying me. Albumin remains stable, but out of the norm. The Platelet count is going down. After 8 week it was 100 (the norm 130 - 400), now (10w) is 90.
I asked doctor about all of them. He said me that the results is quite ok. But I am concerned. Seems 10w results worse than 8w. We are on the 12 week of treatment, so we are very close to the end of the treatment. That is why, the questions and doubts are killing me.
Is Harvoni doing its job well?
Are those figures could be sign of virus resistance?
What will be the end of treatment virus load?
Doctor is relaxed, but I am not. At the same time, mother has no complains, says that feels herself better than before.

concerned father · « **Reply #2283 on:** June 08, 2015, 08:38:54 am »

What is her viral load now? undetected?

Cute · « **Reply #2284 on:** June 08, 2015, 09:05:44 am »

after 4 weeks it was <0.010 KIU/ml
next virus load test will be EOT (12 week).

Lynn K · « **Reply #2285 on:** June 08, 2015, 10:41:53 pm »

My platelet count has been between 80 and 90 for at least 5 years now which for me is due to my cirrhosis.

They don't get worried till below 50 if I remember correctly ant at 30 they will do transfusion to increase platelet count.

Ninety is not great but not worrisome just yet.

Good luck to you both

KC · « **Reply #2286 on:** June 08, 2015, 11:44:48 pm »

Hi Lynn.

Your numbers are looking pretty good after tx. How are you feeling these days?

KC

Lynn K · « **Reply #2287 on:** June 09, 2015, 12:35:13 am »

Same as always just not anemic from the Ribavirin anymore so I feel better there

Otherwise still the general tired I have felt for years just keep on trucking

KC · « **Reply #2288 on:** June 09, 2015, 12:40:28 am »

Lynn,

I'm sorry to hear you're not up to par yet. Keep us posted as time goes by. Hope you feel better soon!

KC

Lynn K · « **Reply #2289 on:** June 09, 2015, 01:41:06 am »

I am fine I have been a bit tired for a long time it isn't really an issue for me.

I work full time, occasional overtime, I have a part time job, hobbies, and mow my lawn. I just keep on keeping on, one foot in front of the other. Life is too short so gotta keep on moving.

The tiredness is either because I am 57 years old or from the cirrhosis so nothing to be done except to live with it. I am as up to par as I ever expect to be.

My goal in treating was to live a normal life span, which unless I cured hep c was looking like it would not happen.

In health

Katie · « **Reply #2290 on:** June 09, 2015, 01:47:19 am »

Hi Lynn...I know you are going to feel improvements, it will just take awhile. 57 is young, my dear, and your fatigue is not due to age. I can't wait to talk to you in a year or so. I bet we will both have really good news to report!

Katie

KC · « **Reply #2291 on:** June 09, 2015, 09:29:21 am »

I'm going to have to agree with Katie on this one Lynn. Keep on keeping on, one day at a time!

Katie, I hope you are feeling better as well.

rchiocchio · « **Reply #2292 on:** June 09, 2015, 09:32:40 am »

Hello all, new around here

29 years old, with Hep C Genotype 1A. Not 100% sure of my numbers right now, do not have my paperwork in front of me. I want to say my recent blood work had my viral load was around 2 million, but don't quote me on that one. I got hep c in '86 through the 40+ blood transfusions I received as a newborn. Got a whole slew of medical issues on top of this one, though I am lucky to not currently be sick from the hep c itself. Got a letter in the mail in my teens from the hospital saying that I may have gotten hep c, and have been seeing doctors ever since. A few weeks ago I was (finally) approved for 12 week Harvoni treatment. I have not been through any previous treatments as every time my doctor wanted to start one, something had come up that prevented me from doing so.

Tomorrow will be the end of the first week for me, and I have been feeling pretty good for the most part. Had one night so far where I was just completely out of it and wanted to do nothing but crash out on the couch. Another day where a headache came on randomly and needed to take something for it / rest. Some mornings I feel like I'm in a fog and it takes a while to get out of it.

One BIG thing I have noticed, that I have not seen listed anywhere as a side effect, is that my sense of taste has definitely changed. It's not EVERYTHING, but most things I have noticed are off. I wouldn't identify it as a metallic taste, but things definitely taste *different*. Had to ask my girlfriend a few times if stuff I was eating tasted odd, and in the end just chalked it up to a side effect of the medicine. Nothing tastes bad, so I haven't lost my appetite yet.

Hoping this is all I experience over the next 12 weeks, but we'll see what happens. I've been through worse; but so far I can't complain

.

Ryan

KC · « **Reply #2293 on:** June 09, 2015, 10:17:22 am »

Hi Ryan,

Welcome to the forum. You will be glad you found it, lots of good encouraging advice here.

I am taking my last Harvoni today! I was on the 12 week treatment program and looking forward to finishing it up. My experience with the drug has not been to bad. I had one bad week (week 9) where I had lots of side effects but the rest of the weeks I can say I felt pretty good. I was starting to be ill from the hep so I entered treatment. Everyone is different, I have found that I have extremely more energy to the point of insomnia and sometimes a bit of anxiety. I still felt better and hope that I have concord this disease. The best thing I can offer to you is be sure to drink LOTS OF WATER! Drink it all day and drink some more. I really believe that has kept my side effects down while flushing out the virus.

Be happy you have this precious drug at the age of 29. You are very lucky that you have an opportunity to be rid of this monster. Take care & good luck!

concerned father · « **Reply #2294 on:** June 09, 2015, 10:53:22 am »

Ryan, please keep us informed. Just like you, my daughter has been infected since birth. She is now 20 years old and will start treatment in late August.

lolacme · « **Reply #2295 on:** June 09, 2015, 02:56:06 pm »

I am getting ready to start Harvoni and I cannot seem to find a lot of information on whether or not people worked while on Harvoni. I am 46 years old and I am a full time college student. I am wondering do any of you think I will be able to start my fall semester. When does the fatigue peak after taking Harvoni. Should I take it before or after school? What helped with your insomnia?

Katie · « **Reply #2296 on:** June 09, 2015, 03:15:20 pm »

Hi Lola, Everyone is a bit different but many have continued working. I actually had more energy while taking Harvoni and have more fatigue now that I am finished with a successful treatment. I had horrible chronic insomnia for at least 5 years. I was like a walking zombie. Within the first week of taking Harvoni I started sleeping through the night and getting at least 5-7 hours and I started dreaming again. I am now sleeping a good solid 8 hours and sometime more. I have noticed so many improvements and the best is getting rid of the brain fog I had for over a decade which progressed and was difficult for the supervisory position and data analysis I did. I finally retired, and now my brain is sharp again. I took my medication at night and it's important to take it the same time every day. Others take it in the morning so I don't know which is best for you.

Like I said, Harvoni affects everyone differently and I am sure it depends on your other health issues. I wish you success in the treatment and you'll find this forum very beneficial. Be good to yourself, eat well, drink LOTS of water and eliminate all stressful situations and you should do fine.

Katie

hope4cure · « **Reply #2297 on:** June 09, 2015, 03:40:32 pm »

Hello Lolacme,

Everyone will experience different side effects with the most common being headache and fatigue. Many people have no side effects at all. I had fatigue through most of my 8 week treatment. I took each pill at 7:00 am and by around 12:00 in the afternoon I started to feel the fatigue. Sometimes not too bad and others, I would be down right drained. I would recommend taking the pill before bed since it can cause fatigue. Many people also experience "brain fog". I had this happen to me for a few days when I started the meds and a few times though out my treatment. This could make studying a challenge if it happens.

One thing I did notice was moving around and working seemed to help reduce my fatigue. The days I did not work, I would always fall asleep for a couple of hour right after lunch without fail.

Good luck to you!

P.S. I go in for my post 12 week lab test this Friday. So far all tests have showed undetected. Hopefully by next Thursday or Friday I get the great news we are all hoping for.

sisterbland · « **Reply #2298 on:** June 09, 2015, 08:42:35 pm »

These last few weeks have been tough on me with some side effects, maybe some general depression/frustration/feeling isolated that we all, no doubt, deal with fighting this virus.

I have two pills left to finish my 12 week tx on Harvoni and have used this forum heavily and it has helped to read what others have experienced. I also work a full-time, high stress job and do not post often.

Reaching out is not always easy but I am asking for someone to respond to my post, acknowledge that I am a on this dragon-slaying team too.

Just having a bad few days, I'm sure it will pass...

Katie · « **Reply #2299 on:** June 09, 2015, 10:09:13 pm »

Hi SIS...You are definitely on our team and you're on the home stretch! Congratulations!

It is a difficult, emotional time for all of us but you are a strong responder and should do fine. It seems many of us are having some issues after the treatment ends as well, however it seems everything improves about 16 weeks post so don't get down if you still feel fatigued for awhile. Many are doing just fine after they have treated and cleared so you may breeze through it.

If you feel down and depressed just remind yourself why...it isn't your norm just the medication. I found the more I did to keep busy and active, even if I had to push myself, the better I did. I am very grateful I went into retirement in 2013 so I could listen to my body and do what it needed. It would have been difficult had I been working to keep up the front and get there on time as my mornings were always slow to start. You've done really well! Be proud of yourself!

Keep us posted and I'll be waiting to do my Happy Dance for you. My dancing shoes are polished and ready to go!

Katie

Forums Index

Welcome

Author Topic: Harvoni Side effects (Read 2190118 times)