Author Topic: Horrible harvoni side effects... (Read 28985 times)

Rungabrun · « **on:** August 20, 2015, 05:12:23 pm »

Only day four and I've had horrible nausea and incredible headaches as well. My doc prescribed me imitrex and zofran, but still nothing. I do not want to stop treatment. I've been drinking at least 3 liters of water a day. Another weird side effect I am having in I have to force feed myself. I feel like my docs are super naive to the side effects of harvoni. Today was the first day in four days I have been able to shower. I take my pill at 6pm. I'm only prescribed 8 wks tx. Im grateful but at the same time the migraine make me wanna crack my skull open. Happy I am unemployed because there is no way I would be able to work like this. Anyone else experiencing side effects like mine?

bkmusic · « **Reply #1 on:** August 20, 2015, 08:04:01 pm »

I'm a vkpak but I can tell you SE they do go away and the first few weeks are rough but you will have some very good days to keep you going. Hang tough you will be very happy with your first UND blood test.

Rungabrun · « **Reply #2 on:** August 20, 2015, 08:10:00 pm »

Thank you I really needed to hear that. Yesterday I wanted to give up because the migraine was so horrid and unlike anything I had ever had. I know I just have to fight and how lucky I am to even be given the chance to be on harvoni being so young.
Not to mention due to federal insurance I am paying $0 co pay so I should shut up and just take it, but I feel like everything I am reading from everyone is all positive and minimal side effects. I guess I'm that 2% that will experience it all. I just repeat over and over and over "I will be hep c free." Literally like a crazy person I repeat this in my head when symptoms are really bad.

bkmusic · « **Reply #3 on:** August 20, 2015, 08:16:04 pm »

It will NOT be same every day just take it one day at a time. The first two weeks were really unpleasant and scary but it does get better. Try NOT to focus on the SE and do whatever you can in the meantime.

You may need more than 3 liters of water. I drink about 1/2 to full gallon a day.

KimInTheForest · « **Reply #4 on:** August 20, 2015, 09:14:32 pm »

Hi Rungabrun, and welcome to the forums. Sorry to hear you are having such severe side effects with Harvoni. I was on 12 weeks of Harvoni+ribavirin. I did not have anything excruciating like you describe. But, I did find in my own case, that throughout treatment, new issues (side effects, I guess) would arise, hang around for 7-10 days, and then lessen or disappear. I was aware of things happening in my body because of the drugs - multiple things, not just the elimination of virus. And I was aware of my body adapting and adjusting to the new conditions constantly. So I would say, don't freak out about any side effect too much based on a few days of it. It may lessen or resolve on its own as your body adjusts.

I did experience appetite suppression. That was a constant problem. I was skinny to start and am skinnier now. And still find it very hard to eat 3.5 weeks post-tx. Smoothies can be a very healthy nutritious thing you can get down when platefuls of food aren't working.

Best of luck and please keep us posted,

kim

gnatcatcher · « **Reply #5 on:** August 20, 2015, 09:22:00 pm »

Rungabrun, I'm so sorry Harvoni is giving you such an awful time. Your headaches sound like the excruciating severity I got when I took Zantac, and your nausea like what I endure for hours to days after anesthesia. In such a condition, it is hard to remember the joys of life or to imagine ever experiencing them again, but you will, and with a healthier liver to enjoy life with. Cross off the days on a calendar or whatever it takes to help you persevere.

During the clinical trials, 11% of the 8-weekers experienced headaches, and 6% had nausea. The numbers are probably higher among the post-clinical-trial patient population. So, you are not alone even if other Harvoni-takers with such severe headaches and nausea may feel too sick to write a post to this forum.

Courage! This, too, shall pass.

Rungabrun · « **Reply #6 on:** August 20, 2015, 09:25:33 pm »

My doctor has been great with giving me medicine to help with the nausea, also the headaches. I refuse narcotic pain meds and that's all they were trying to give me yesterday and it was quite frustrating. Hoping for a better day tomorrow. Symptoms seem to be the worst after I eat or when I first wake up. I will up my water intake, too and see if that helps. I'm so thankful people understand... Explaining this to people sometimes also becomes frustrating because they just don't get it. I'm hoping it all subsides. My primary physician seems to know more than my hepatologist and has been a godsend about sending prescriptions to the pharmacy. I am very thankful that my side effects aren't insomnia, I'm glad I am more fatigued that way I sleep a lot of this stuff off except to pee more than I ever have in my life. LOL I feel normal talking to you guys and not feeling like some zombie. Praying for a better day five. I refuse to lose in this battle.

Scoutdoy · « **Reply #7 on:** August 21, 2015, 12:26:46 am »

I don't know if this will make a difference but I had a headache the first couple of days I started Harvoni...I found if I drank a full glass of water and then waited 15 to 20 min before I took my pill it helped. I also changed when I took my pill from 8 am to noon. I didn't experience the headaches you are describing...that really sucks. I can deal with almost anything, even a broken leg, more than I can a headache. Thank goodness I have had no side effects since the 4th or 5th day of starting and I am coming up on my 4 weeks...good luck with those headaches

scout

Lynn K · « **Reply #8 on:** August 21, 2015, 12:38:06 am »

Hi Rungabrun

SO sorry to hear of the migraines you are having. Did you get migraines occasionally before you started treatment? Just curious I have never had one but I hear they are terrible.

If you have had migraines on occasion before maybe Harvoni is a trigger for those who already get them would be something Gilead would probably be interested to know either way.

Hoping you feel better soon
Lynn

Rungabrun · « **Reply #9 on:** August 21, 2015, 12:17:33 pm »

I had horrible migraines all throughout middle and high school and was prescribed fioricet. Helped tremendously, however I was also put on pain management after a car accident which led me to narcotics... Thirteen years old. I didn't even know what the word narcotic meant, I just know it gave me relief and I wanted more and more. I was hooked and the pills led to heroin, which led to my HCV. So when they kept pushing narcotics the day before yesterday for the migraine I'm like "WTF" - I actually found an old ultram prescription and popped three of those babies and I was okay within an hour. I told my doctor this when she called to check on me this morning. They wrote me another script. I just do not want to go down the road of addiction... Again. I've come so far and harvoni is a gift of a lifetime for me. I feel like I am whining, but my insurance co pay was $0 for a bottle that cost over $32k. Today has been one of the better mornings. Just taking it easy and taking it minute by minute. I find that phenergan helps me more than the Zofran for nausea. I am only on day five. I keep pushing. I guess the side effects are different for everyone. Did anyone ever notice the side effects for harvoni in Canada are different than US?

Rungabrun · « **Reply #10 on:** August 22, 2015, 10:15:35 am »

Day 5 - anyone notice cold sweats or feeling lightheaded when standing up? Also some vomiting last night. I felt 110% better after I threw up though. Anyone else ever go through any of the above or any weird side effects?

Scoutdoy · « **Reply #11 on:** August 22, 2015, 10:20:45 am »

Hey Run, I am in no way trying to minimize your side effects but do you think that you might actually be sick with a cold or the flu? My whole family is sick right now. Just a thought

Scout

Rungabrun · « **Reply #12 on:** August 22, 2015, 11:41:39 am »

Hi Scout, I don't think you are minimizing it in anyway, I honestly just think I'm the small percent that gets abnormal side effects. Even on 8mg zofran I was dry heaving and throwing up my water last night. I took phenergan instead and it seems to be working much better. I'm relatively healthy besides the HCV. It's killing me that I can't work out. I almost passed out cleaning my own bathroom. Just weird and wondering if I am just some freak of nature or if anyone else is going through these weird side effects. I drink up to a half gallon of water daily, not all at once but thoughtout the day. My doctor upped my Tramadol and my headaches are MUCH better, just dull not immense pain like before.

Scoutdoy · « **Reply #13 on:** August 22, 2015, 12:33:31 pm »

Your not weird. You could try doing things a little different and see if it helps like changing the time of day, adding food, or waiting 2 hrs to eat after you take it. There could be so many things that might be triggering the side effects...I don't eat before or a couple of hours after I take it. Everyone is different.

Scout

maneman · « **Reply #14 on:** August 22, 2015, 12:42:10 pm »

Rungabrun,

I have empathy for your situation, it appears that you may be more susceptible to side effects from drugs than a lot of people. This clearly demonstrates that we are all different in how we react to medications.
I have experienced no real side effects from Harvoni + Ribavirin yet that bother me or I can definitely attribute to treatment and I am working full-time doing odd hours/shifts that mean I do not get regular sleep.
You appear to have a history of migraine headaches and this could have a significant influence on your treatment experience.

On the plus side it's only for 8 weeks and if after this time you are cured of HCV then it will be worth all the struggle.

Rungabrun · « **Reply #15 on:** August 22, 2015, 01:55:58 pm »

I've read of people just breezing on by without any issues and I envy them, but I am almost grateful for the side effects. Not very many people are given the chance to cure their HCV. I'm incredibly lucky. I take my pill 6pm everyday and I literally have to force myself to eat at times. I have little to no appetite. My mantra is "I will be cured." I literally say that over and over when I start to feel sick or have the dull headache and migraine. I totally love the fact that I can get on this forum and hear from people because it makes me feel less alone and less crazy.

blondi57 · « **Reply #16 on:** August 24, 2015, 07:20:29 pm »

Hi All,
I completed. Viekera and Riba in June 2015. In the first weeks I had terrible headaches. When the nurse from the pharma called ,we discussed how much water to drink. I was drinking one gallon plus a day based on the previous instructions , lots of water,. She told me that too much water can cause headaces, and she did a calculation based on my weight. I reduced my water to 96 ounces and the headaches diminished greatly, although I still suffered some. I receive my 12 week EOT in 10 days, and am hopeful I have beat this. This treatment was really a piece of cake compared to the interferon tx I did in 1994, and subsequently failed to respond. . I feel so blessed to have been able to complete this treatment. Best to all of you

Rungabrun · « **Reply #17 on:** August 24, 2015, 07:31:53 pm »

You are so strong. I don't know if I could've done interferon. I know I'm not drinking too much water, just enough. The mistake I made earlier this week, was that I was using so much ibuprofen it was causing rebound headaches. I was also extremely nauseous, dry heaving, and vomiting. Today is pill seven and I am now on promethazine for nausea and tramadol for the intense headaches. I take my Harvoni at 6pm while eating and I sleep a good 12-14 hours some nights. I am still very fatigued and get out of breathe easily, get really pale, but only seven more weeks! Truly grateful to be given this chance for a possible cure you know?!

Hope all goes well with your end of treatment results.
I will definitely be praying for you.

slats1056 · « **Reply #18 on:** August 25, 2015, 11:01:32 am »

Rungabrun, Welcome to the 2-3 % club. Don't sweat it, it should level off. First four weeks I had MASSIVE headaches, insomnia, joint pain, neck & lower back pain, tinnitus, & etc.- etc.! Week five leveled off with a new set of less severe sides. Try mixing up fluid & food intake as suggested. Snack a lot rather the eating meals until hunger returns.. I'm currently 5 weeks & 5 days into My 12 weeks. Drinking about an oz. per lb. of body weight in fluids to keep hydrated & headaches under control. Still have about one a week & it's usually a CRANKER!!!! Still have bad case of tinnitus especially left eat. But, let's be frank!!! Our bodies & brains are going through a lot right now as well as is the past & will be well into the future. However it seems a small price to pays to achieve SVR. I personally have only had about 3 Aleve , 4 Advil , and 2 zantac to help Me through. That is just Me !!! Do what You have to & control the sides as long as Your Dr. knows & You feel O.K. with it. Don't over do it. Stay strong_ Use the forums-Laugh until You Pee on Yourself- and above all PRACTICE YOUR HAPPY DANCE!!!!!!!!!!

Rungabrun · « **Reply #19 on:** August 25, 2015, 03:14:27 pm »

Thank God there are some 2 to 3% patients out there. I thought I was the only one for a long time with the massive headaches the joint pain and nausea and killer killer migraines. I i'm trying to stay positive. I know this won't last forever. And a cure all over 90% is incredible. I am forever grateful to my hepatologist. I can't imagine what it is like for someone who does no I have insurance. You go in for my first blood draw on Thursday and will probably hear back Monday if anything has happened we're gone down since I started Harvoni. The first week was unbearable but today I actually had enough energy to clean my room and actually do you want to take a shower. Whereas before I can imagine doing those things. Slow and steady. I absolutely love mixing my water with skinny girl brand water enhancer. It makes me want to drink more water. I was always pretty repulsed by water alone, so now I drink like a fish. I'm so grateful those for the support that I get in this community. I feel like you guys get me. I can explain this to people without HCV. They just don't get it.

Yenchicd · « **Reply #20 on:** August 25, 2015, 07:52:57 pm »

My brother in law was on Harvoni 90-400mg from July 24 through Aigust 21,2015 when he hung himself. No one knew the severity of his depression CAUSED BY THIS DRUG. He had been on three other medications, the last one was a medication failure. Even after that he was in good spirits and was a fighter. In one month, even having positive results in his lab work, this medication and the combination of Ribasphere 200 mg. twice daily for one month resulted in a depression so severe that he took his life. Please, please beware. I have reported this to the FDA. Please seek help if you feel depressed on this medication. There is help!

KimInTheForest · « **Reply #21 on:** August 25, 2015, 08:17:24 pm »

I am so very sorry to hear about your brother, Yenchicd. Thank you for posting his story here.

kim

Yenchicd · « **Reply #22 on:** August 25, 2015, 08:23:41 pm »

Thank you Kim. We are all devastated. I am in the pharmaceutical business and know that drugs save lives. I just wanted to alert everyone of this side effect so that people will seek help. You are all so very LOVED by your friends and family!

gnatcatcher · « **Reply #23 on:** August 25, 2015, 08:50:51 pm »

Yenchicd, my heartfelt condolences to you and your family. Thank you for letting the FDA know. Ribavirin (Ribasphere) has been known to have a possible side effect of mood swings (sometimes severe ones), including depression. I'm so sorry the combination of Harvoni and Ribasphere caused your brother-in-law such deep despair. Thank you for thinking of others during this devastating time and encouraging anyone experiencing the side effect of depression to seek help.

Gnatty

Teebear · « **Reply #24 on:** August 27, 2015, 08:04:28 am »

I am on day 5 of my 8 week Harvoni treatment and as well having bad sx . I have had sever headaches fatigue dizziness and vomitting .... I knew there was a chance of this so all I keep thinking is its going to be worth it in the end to be Hep C free... hoping you have started to feel better!

Rungabrun · « **Reply #25 on:** August 27, 2015, 08:10:45 am »

Hi Theresa - call your doc they can give you meds to help.
That's what I had to do. My nausea and headaches were so bad I wanted to quit treatment. I am now on day 10 and I can assure you it gets better.

I take phenergan 25mg nausea and for headaches ultram.
Keep drinking lots of water and sleep as much as you can. I went through HELL on week one but I stuck to it and now I am going for my week two blood draw.
You can do it Theresa, I promise. Do not hesitate to call your doctor! Especially with the vomiting - I too was vomiting and the nausea medicine helps so much.
Please keep me updated on how you are doing.

Gab

Teebear · « **Reply #26 on:** August 27, 2015, 08:22:12 am »

Thanks for the advice Gab ... I will ll today and for the encouragement that it does get better ... I had Gastric bypass surgery almost 3 years ago that is actually how i found out I had this dreaded disease o unfortunately I am limited to what meds I can take as to my stomach issues.... where you unable to eat for the few days as well.... I am trying to stay positive especilly for my grandkids I want to be able to live a full and healthy life for them...

Rungabrun · « **Reply #27 on:** August 27, 2015, 08:54:01 am »

There were some days where I had to force feed myself. There were also a few days where I would look at the clock and be like omg I haven't ate today! Loss of appetite is a symptom. I would still call your doc, there are so many meds you can take to make this more comfortable. Mind over matter. Trust me there were days when I would say over and over again "I'm gonna beat this!" Or "I will cured." It sounds silly but it worked for me. Keep drinking tons of water that helped so much with my headaches. I'll be praying for you. You are not alone in this!
Gab

slats1056 · « **Reply #28 on:** August 27, 2015, 02:23:05 pm »

Yenchicd, This one took Me a while to respond to as I can relate from first hand experience after losing a younger brother several years back. My condolences. It gets better but never goes away. You & the family must not take on the guilt of his actions as he was not himself. Unfortunately whether or not You realize it , You are also a victim that has been hit by a heavy blow that could most likely not have been prevented. My apologies & My prayers are with You in this very trying time. Glad your are reporting to FDA also.! Are Your reporting to Gilead also?
EVERYONE NEEDS TO BE AWARE OF SEVERE MOOD SWINGS AND DEPRESSION AT ALL TIMES. WHEN IN THE GRIP OF THE MOMENT THINGS CAN AND ARE DONE THAT ARE NOT REVERSABLE. IF ANYONE EVEN ALLUDES TO DOING HARM TO THEMSELVES PAY ATTENTION AS THIS MIGHT BE THE ONLY CHANCE TO HELP THEM OUT!

Rungabrun Glad You are feeling better , stay the course for it is our destiny to be cured.

Teebear Welcome and sorry that You came in on such a downer time on the thread, keep a positive attitude, lot's of folks are rooting for You.
For a quick pick Me up check out the post treatment check ins for a good positive blast. I have been catching up & it is looks very encouraging. Keeping Your head up & keep kicking ass people!!!!!!!!!
SVR is like a dream. No one can see it , but it is tangible and will be reached.

Gnatty, Here is one for You. There are three kinds of Men. The ones that learn by reading. The few that learn by observation. The rest of them have to pee on the electric fence to find out for themselves!!!!! Will Rogers

drummerman · « **Reply #29 on:** August 27, 2015, 07:40:51 pm »

Sorry to hear of your side effects Rungabrun.

I promise it will get better... I literally have to take one hour at a time... .and I am not having that hard of a time. 2nd and 3rd week sucked. Queasy, out of breath and ate even when I wasn't hungry at all.

On another note, talking about depression from riba. Does anyone else think its weird that the docs (at least in my case) don't even bring that up with the new tx.

When i first treated it was big time consoling every time I met with my nurse. Lots of questions. Even prescribed antidepressant BEFORE I took my first shot. This was standard procedure for all of her patients.

I guess it is not as much an issue now that they took interferon out of the mix?

Anyway, I'm not feeling depressed at all, but feel weepy and moved at times, like from news stories, movies or even some music at times. Events and music affect me much more emotionally now...I don't mind it, I just see and hear beauty in a much more intense way, Weird. I kind of like it.

Course its easy to think everything is due to the tx drugs... but it could be just a new stage in my life and totally unrelated to tx.

dm

Rungabrun · « **Reply #30 on:** August 27, 2015, 08:12:13 pm »

Day ten and it has been a little easier everyday. My doc prescribed phenergan for nausea and ultram for the head and body aches. I too literally have to force feed myself. I never feel hungry, and when I do it's for something sweet. I'm drinking so much water. I am starting to get little burst of energy here and there, but can become out of breath shaky and weak at times. Whenever I think about quitting I look at the price tag of $32k (for only 28 pills) and that I had a $0 copay and there are people who will never get to receive medication like this.

A friend of mine was on sovaldi and was hospitalized for trying to hurt herself. She never had any prior issues and I do believe it can mess with someone's brain chemistry. I am on a pretty common antidepressant right now and my moods have been good. I get low sometimes, but I blog and I get inspiration from you guys.

Went today to have my first bloodwork done since I started ten days ago. Trying not to have high expectations.
Gab

Rungabrun · « **Reply #31 on:** August 28, 2015, 02:56:25 pm »

Anyone getting acne or any weird skin issues? I've had a pretty normal complexion and its day eleven now and I am breaking out everywhere. Chest, back, face. Haven't changed detergents, or used different skin products. I was just wondering if anyone else is noticing any weird side effects?
Gab

gnatcatcher · « **Reply #32 on:** August 28, 2015, 03:45:32 pm »

Gab, I've had a few more puss-filled pimples on Harvoni than the rare ones I got beforehand. To an oldster like me, I thought that was part of Harvoni's rejuvenation effect (lol), but the amount you are describing is no laughing matter. You mention being on meds for other sides, so I trust you'll bring the acne to the attention of your medical professional if you haven't already. Perhaps it's just a sign that you have a strong immune system tangling with the Hep C-Harvoni forces, but if it were happening to me, I'd want an expert's explanation. -Gnatty

Rungabrun · « **Reply #33 on:** August 30, 2015, 04:10:45 pm »

It's was just weird I woke up and I looked like I was going through puberty, and they are like pus filled blemishes... I've never had bad skin so I was like it's gotta be the Harvoni because I am drink water like crazy and write my blog so I can monitor my symptoms. Nausea is still an everyday this for me but I'm always nauseated with meds and in general. Anyone ever notice their headaches to be worse when weather is bad? My head is pounding today and it about to rain here just curious if anyone else has noticed the same. Day 13 - so proud of myself for doing this.

Teebear · « **Reply #34 on:** September 03, 2015, 10:43:22 am »

I also am on a 8 week treatment and have some nasty side effects I am on day 9 the migraines do subside but I still get daily headaches which are controllable with tylenol I was nauseas to the pint of vomitti g for the first 6 days but haven't in the last few days I find now I have good and bad days and times throughout the day I take my meds at bedtime so I seem to sleep through most of the side effects and I wake up with the headache but have energy til about mid afternoon then the fatigue and yuckiness sets in wishing you the best and hope things turn around for you soon

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Author Topic: Horrible harvoni side effects... (Read 28985 times)