Harvoni Side Effects (Page 21)

I have been taking Harvoni for 3 months now and am having nerve pain in my legs and lower back pain. Is anyone else taking Harvoni having any of these same side effects as me? Please help if you are able. Thank you

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Tony it's hell isn't it? And yes my neck is bothering me too. Knees on occasion as well. I feel better if I keep moving. When I sit for more than a few minutes I stiffen up again. Other than pain meds there doesn't seem to be anything we can do about it.

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I don't know if anyone is paying any attention to what I write, but here's something more I've learned. The ledipasvir drug in Harvoni is eliminated by billiary excretion. With this type of elimination, small amounts of the drug can be reabsorbed through the GI, known as enterohepatic cycling. This can, over time, prolong the half life of the drug. I read this "Billiary excretion can be inhibited due to disorders such as hepatic or gallbladder diseases. Transporter-mediated secretion of a drug into the bile may be competitively inhibited by other drugs or endogenous substances. In such conditions, clearance of the drug may be reduced and the dosage regimen must be adapted."
If a person has a sluggish digestive/GI system, it's more likely that more of the drug would be reabsorbed. High fiber diet might help with elimination of the drug. I recently had a few bad days of joint pains, chills, muscle aches, and hormonal fluctuations. I took this into my own hands and am doing GI cleansing with activated charcoal, Bentonite clay, and psyllium husk drink. I do it far apart from taking my pill so it doesn't affect initial absorption. Boy do I feel better! I will continue this practice every day until the end of treatment to avoid a toxic build up of this drug in my system. Also drinking warm lemon water to stimulate gallbladder prior to the cleanse, as was recommended.

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What the heck is your theory then about who should/should not take it? I'd very much appreciate you sharing this knowledge rather than just intimating you know and are not saying. I would like to avoid playing Russian Roulette with my health. All good wishes

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There is no magic answer as to who can take Harvoni and make it through with no problems. There are those of us who were healthy with little liver damage who ended up with many problems and those of us with significant damage who also ended up with many problems. I for one led a holistic life during treatment and had minimal liver damage and have so many problems I wish I had never taken it. I have had over 100 people contact me for the FDA reports I secured under a FOIA request and there does not seem to be a rhyme or reason. Based on what I know now, perhaps I would have taken it but when side effects other than what is noted in the dispensing information appeared (which started on day 10 for me) I would have stopped. Your body speaks to you and it was telling me something was wrong. Even Sherri with all her herbs and such is now experiencing some of the usual problems many of us now have what seems to be permanently Hopefully her personal protocol works for her. Wish there was an answer but indeed I believe it is Russian roulette but no one says you have to stay on the wheel if you choose to spin it.

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I have finished Harvoni about 3mths ago during treatment I suddenly started getting joint pain in my hands elbows and feet..I was hoping when I finished treatment it would calm down but it is now much worse to the point I can't even open my fingers in the morning..I never had any symptoms of joint pain before I started..I honestly think Harvoni has cause an overactive imune response. .I have mentioned to my hep c nurse this problem but was told that this is not something that has been reported with Harvoni. .I have read many posts regarding joint pain during and post Harvoni.
I think it should be listed as a side effect of treatment!

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I am in my 8th week of Harvoni. I am experiencing severe joint, muscle and nerve pain. My joints are so swollen its hard to open my hands. I also have other severe pain down my legs, in my lower back, kidney area, I drink lots of fluid but I am getting cramping in my calves, severe cramping as well as the ongoing headaches and complete exhaustion. When I told my doctor about all of these, he said the samething. All I know is 85% of all these things I describe, I have NEVER felt. I am convinced its the Harvoni, I dont know what to do. I have been trying everything from fruit regiments, to new dietary replenishments as well as other things I have been reading on these Medchat websites. It certainly is clear that many suffere from side effects and not just the headaches and tiredness which for me were understated as well. As I sit here and write this, the sharp pain in my kidney areas is killing me. I also believe that the doctor, must only think that the side effects Harvoni claimed are the only ones. Personally, I hate being called a liar in so many words. The positive note, it my Hep C is gone, no trace after the third week, this is my last week on it, I am done Thursday. I am hoping, wishing and praying that my body does better after I am done, trying hard not to get mentally drawn into the additional, or continuing side effects. I also hope that they dont get worse. This has been a real hard 8 weeks, I am hoping for more energy, a better appetite as well as for better sleep. As tired as I have been, which by the way has been wiped, totally wiped out, I sleep like garbage. One other very important note as far as side effects, I am depressed, extremely depressed.. I had been suffering from depression but NEVER this bad... This whole experience has been one I would have reconsidered had I known, being Hep C free has not, at least up until today has been one that hasnt allowed me to feel good enough to celebrate the eradication of my Hep C. As I said I hope, wish and pray that I will feel better. Having these rooms to share has been a blessing because when I see that I am not alone with these symptoms and side effects at least I know that I am not alone when it comes to all the doubts about my side effects I describe to my physician only to be told one or any have to do with Harvoni, yes it does, I know, Gliead (Harvoni) knows it and my doctors will continue to know it... Praying for all of us to enjoy life again.....

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I so agree with you. Well over a year now and I have such claw like fingers in the mornings mostly. Pain all day. Crackling joints in hands and feet. Why won't the doctors come together to realize we are not a small amount of people here. And sadly other than pain medications I don't believe there will be anything they can do with us.

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Im sorry thats happening to you. Im getting ready to try Harvoni & ive heard the same thing in every post. I will Pray for you. Are you clear of hep C yet?
Ty,
Theresa

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every time I try to mention this it gets fobbed off as not related to treatment. .I am in agony with joint pain from hands feet elbows and recently my knees. .I hope this gets better as it's causing me a great deal of agony right now..the difficult part is no one will admit to the fact their is a possible link..the only thing I can say is I never had any of this before treatment. .it all started about a week into treatment. .what can we do to make doctors realise this is a real side effect of Harvoni!

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JennyJolly, It would be irresponsible of me to tell anyone what to do as far as whether to take Harvoni or not. I did so much research prior to taking the plunge. My age and reproductive age status was the deciding factor for me. I belong to a private support group and most people I've met on there do not report these joint pain symptoms, at least not at the severity that people on here report. I completely believe that not everybody is a good candidate for Harvoni but I don't know why since I don't know each person's profile, no way to find a pattern. I believe that there should be better prescribing practices based on patient profile, but Gillead and the FDA are blind to this, or just do not care. I share the science that I know and have learned for those who choose to take Harvoni. Possible things that may help prevent side effects. Right now I'm going deeper into my research on GI permeability and prescription drug side effects. So many people I've talked with do not eat right and take meds more than they should. NSAIDs and antibiotics are very destructive to gut health, creating a sieve in the lining and an unhealthy microbiome. Additionally, it is finally common knowledge that poor gut health equals poor immune health. I also agree that it's possible that Harvoni works so quickly that our immune system, which has been in overdrive 24/7 for many years, shuts down too quickly. That is the researchers' current theory as to why some people see their liver cancer return, and some develop it for the first time after Harvoni treatment.

I would just say that if a person is healthy, no liver damage yet, and not at menopause age (age doesn't affect SVR outcome for men), he/she might want to wait for the newer drugs. For those with progressing liver disease, it's a more difficult decision. There is the first real-world data report on Harvoni treatment efficacy (from data released by the VA) in the August issue of Hepatology, a professional journal. Anyone can access it. So, I only have one more week left in my 8 week treatment. Right now I feel pretty good. Fatigue, moodiness, and very mild headaches are the most consistent sides, but I still work out and hike. I have had a few very short episodes of worse sides, but nothing that lasted. I probably will never know if all of my work (supplements, diet, exercise, saunas) has helped but I think anyone going on any powerful drug needs to make an effort to learn about how to improve their health before and during treatment. Most doctors do not know and can't advise in this area.

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Mags I would suggest trying to print up some of the posts from here and other forums. There is enough to read about if any doctor took at least an interest in this. The problem is they are busy and don't really look to see what is happening. They only know what their own patients are reporting to them. I refuse to take any heavy duty pain meds that is why I said they dont' have much to offer us. BUT.... to at least admit it is from the treatment would be a nice start.

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@jim, please keep us posted on how your treatment is going. I like to think this poison passes but docs are driven by money and some are more greedy than others. I agree if only they would be honest and admit the side effects. If they did that though they could never in good conscience put another person on this because the real truth is they do NOT know. If they told us that probably 60% would opt out.
We got screwed by our doctors, sold out to big pharma and many of us have had enough betrayals who needed this! I got a double kick in the ass as they pre purchased my med, talk about rip off! And just like the Blue wall of silence there is the white one to. Lower income, VETS, InMates drug addicted, HIV-pos no one cares. They use us to get kick backs from the government and pump up the stock. Amazing huh? For all of us who worked our asses off in recovery this was like the devil slipping right in. Trust your doc but tie up your camel.

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I guess it might be something to show the doctors that say there is no one having these side effects. I'm very happy I have cleared my virus. Well I have not got my end of treatment results yet but so far the virus hasn't been found ..the sad thing is I thought it was all over but I still feel exhausted with not being able to sleep with the constant joint pain.. Hope it goes away soon so I can start to feel like I'm alive again!

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Would not touch Harvoni under any circumstances thanks to the hundreds of posts I've read detailing severe effects months,year afterwards.

Playing Russian roulette with health if take the big pharma poison.

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I realize thy that I am posting a good year after these original posts, but I must speak up. I am 14 months post treatment, and I am virus free. However I am part of a group that developed horrendous side effects during treatment that did NOT go away when treatment ended. There are the few published side effects from insomnia to pain in many areas of the body especially the liver area but goes on to inflammation of the lungs with one death (after 2 weeks treatment) blood problems from low red cell count to blood clots. Remember that Harvoni was one of the drugs rushed thru approval because of need and they are making such an obscene amount on each pill they downplay any side effects, especially those like ours that continue well past discontinuation of treatment. Is Harvoni a miracle drug that works? Yes. However go in with your eyes open. Many in my group would rather have the HepC back.....

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Hi Keith I have just finished Harvoni 3mths ago..I tend to agree my expectations were high for feeling good after treatment. .turns out the severe joint pain I developed during treatment has got even worse after finishing the 12wk course of Harvoni .
I have hands elbows feet and knee pain all at the same time it's horrendous. .I have mensioned this to them but have been told it's not a side effect of Harvoni despite the fact I developed it 2wks into treatment!
It's great to be free of Hep C as I had stage 4 with cirrhosis and now things on the liver function side are good but to be left with no explanation as to why this developed during treatment is a bitter pill to swollow. .I'm hoping things will settle in time but convinced that Harvoni was the cause!

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Mag, thanks for replying! I also have tremendous pain in my joints - my rheumy now has me on morphine. My anxiety level is thru the roof - I have to take Ativan so I don't have any more panic attacks, and to turn my brain off at night to be able to sleep. Several other problems that developed during Harvoni treatment, but the worst is my liver. Before with HepC if I over did things it would swell and hurt. A week or so of rest usually took care of it. During my third week of Harvoni it swelled up and became painful and hadn't stopped - for 15 months now. My wife had a bad feeling taking Harvoni just a couple months after fda approval, but after 2 courses of interferon, then 2 more courses of interferon with ribavirin, I was desperate for a cure after 35+ years with this disease. No one have me any hint of the true side effects, or that they would last after treatment ended.

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Wouldn't touch this Big Pharma poison with a bargepole

Russian Roulette with your health is not a good pastime

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I never would have taken this drug had I known the damage it would do to me. As it turns out, I never had cirrhosis even though they convinced me that I did.

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Russian roulette is not gaming roulette
You hold the gun and in the chamber is one live bullet and other dead ones
'The game' is to press the trigger and pray it's not the live one

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