Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: CHepCFree on June 01, 2015, 08:32:09 pm
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I have read several posts on the very large forum about individuals who are experiencing Shortness of Breath, Chest Pain and Irregular Heart beat post TX I am 13 weeks post 12 week TX and waiting on my SVR 12 results.
I have all of these issue since taking Harvoni even though my trip through the 12 weeks was fairly uneventful. I also have tinnitus, vertigo and headache but I am more interested in hearing from those who are experiencing those effects listed in the title.
I have seen a lung and heart doctor and waiting on test results to see what potential damage there is. If you have experienced this unfortunate fate as well, I'd like to hear from you.
Thanks
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Sorry to hear,were you in good health prior to treatment? I have concerns of the long term effects, I'm 33 years with hep c and feel great and considering the treatment but cautious,
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I have had some post treatment effects but I am F4 and overweight. Smoking tobacco, even at my 7 smokes per day doesn't help either. So I would attribute any heart palps I feel to the known effects of nicotine http://en.wikipedia.org/wiki/Palpitations as much as the tobacco industry tries to debate this world wide, nicotine does cause stomach upset and heart palpitations.
However my muscle fatigue and myalgia are easing up so is the tinnitus which was present before treatment. If anything my eyesight was most effected and the speed at which my eyes adjusts to things is now returning more to a pre treatment level.
According to Gilead it takes appx 12 days for the medication to be completely discharged from the blood. I have no more headache at 14 days post treatment, my eyesight is improving, my muscles are relaxed and strong. My digestive system is better than it has been in years and overall I feel good.
By comparison to what happened post peg/rib with serious anemia, weakness, fatigue and depression from a failed treatment and the knowledge that I would have to go back to work regardless of how terrible I felt, 24 weeks on Harvoni truly was a cakewalk. And my liver was F2-3 by biopsy before 48 weeks of interferon tx in 2004-5. So I cannot fathom why people with better liver function should be seeing serious side effects with Harvoni other than perhaps those who have taken treatment with preexisting conditions might need more careful study as the drug becomes more widely used.
I would seriously consider seeing a good cardiologist and speaking to Gilead if I was having some of the level of difficulties some here are reporting!
I truly hope your post treatment effects ease and soon. The possibility of serious debilitating CV trouble getting in the way of serious fishing, exercise and any possible future employment opportunities would be a ROYAL PITA, to say the least! And might for some with low level liver damage be a terrible outcome. But for me it was not going to be very long before my terrible liver function would start to cause heart and kidney trouble so the risk was absolutely necessary.
Kind regards
Eric
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Hopefully nobody ends up with CV problems. I went to urgent care after TX for the profound shortness of breath and overall weakness I was having. Good news is, out of desperation, I started taking vitamin D and began feeling better within days. I planned on starting supplements a couple months after TX. Could it be once the liver starts functioning better sans virus, the nutrient demands become higher? Perhaps it is part of the regenerating process. Anyway, I recommend vitamin D if not already taking it. I started with 800mg every few days for a week.
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I have read several posts on the very large forum about individuals who are experiencing Shortness of Breath, Chest Pain and Irregular Heart beat post TX I am 13 weeks post 12 week TX and waiting on my SVR 12 results.
I have all of these issue since taking Harvoni even though my trip through the 12 weeks was fairly uneventful. I also have tinnitus, vertigo and headache but I am more interested in hearing from those who are experiencing those effects listed in the title.
I have seen a lung and heart doctor and waiting on test results to see what potential damage there is. If you have experienced this unfortunate fate as well, I'd like to hear from you.
Thanks
i get the same thing when i wake up in the night its really bad gets better in the day...i think its muscular but cant be sure . seems the docs dont know anything
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I have just entered my 5th week of Harvoni and 3 rd week with ribivirin which is not very long in the whole scheme of ribivirin. I have been experiencing chest pain I thought may be related to the ribivirin even though I do not feel like my blood is low. the chest pain started about a week ago. I have had ribivirin twice before and never had chest pain with it even when my hemoglobin dropped so low I had to have a blood transfusion. I am wondering now if Harvoni can cause cardiac problems that are just not well known yet. The fact is this drug hasn't even been out a year so who knows.
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I've read a lot of posts in this forum where people are having problems post harvoni treatment. Fortunately, I haven't experienced any negative side effects at 6 weeks post harvoni treatment. I feel bad for the people that are experiencing side effects. After the last treatment, I did in "06", it was one long continous side effect, it seemed. I never felt right after that treatment. This time, after this treatment, it feels as if all the previous side effects have subsided. Not that I'm complaining but I'm wondering why so many people are having post Tx side effects?!
During this treatment I did a combination of vitamins. B complex, B12, D & E vitamins. Which the doc said was fine. I'm wondering if doing the vitamins during the treatment and still taking them now has had a positive effect to where I haven't experienced any negative sides?!
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GLCII- I am starting my 3rd week on Harvoni only, I have had virtually no side effects except for a mild headache on occasion. I dont even know I am taking any medication. Literally if I didnt physically take the pill everyday at 3, I wouldnt know I was on medication. I know I have 9 weeks to go, but I am going to keep a positive attitude, after reading your post, I know thats possible. I take Calcium/D and magnesium plus a multivitamin, I also drink 120oz of water a day. At least 62oz right before and right after I take the meds. I was told to change out my tooth brush and razors one month after treatment begins as not to re infect myself. I did that already. Past treatment has been a nightmare, this is a miracle drug!!!!!
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Hi april
I'm glad you're feeling well while on the treatment and I hope that feeling continues. While on treatment, about 3 weeks in, I did start to feel rough. My stomach would rumble constantly, my sleep went down to about 3 to 4 hours a night and I had headaches at times. But, unlike you, I didn't drink water as I probably should have.
It's after I got off the treatment everything seemed to subside. Now that I'm off the medicine, post treatment, I feel great. I haven't had any lasting effects, so far, which I'm thankful for. After reading some of the posts about people feeling bad after the treatment, I was wondering if the vitamins might have played a part in my feeling energetic and not experiencing any of the symptoms that others are feeling. The only thing I have noticed, after the treatment, is how the joints in my hands feel. But that could be due to age (going on 54) and working in an auto factory for the past 30+ years. :-[
Like you, I also changed out my toothbrush and razors. Thank God for the Dollar General. There's some topics on here somewhere about changing tooth brushes and razors you might be interested in.
You're right, those past treatments were a nightmare. I'm sure most of us wish we had never done the interferon treatments. I don't think I ever felt right after the last one. I think all the inter & riba did was anger the virus for trying to kill it and it retaliated with a vengance :o
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Hi Cathy CHepCFree I was suprised you were giving Harvoni a 2 thumbs up after all the side effects you have and had. Am I missing something? Especially for people who can wait for a better side effect free treatment if possible... those with Stage 3-4 maybe need to gamble.
RJ
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Not sure where you see I gave Harvoni two thumbs up. Based on my continued post TX issues, that is certainly not my feeling at all regarding this medication. My quality of life has been negatively impacted.
For those who have suggested....I am indeed taking supplements to detox, boost my body function, etc. Now experiencing constant headache, continued ear ringing and vertigo. No fun whatsoever..............
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I'm about 14 weeks post TX (dr hasn't ordered SVR test yet :-[) and still having recurring muscle spasms, headaches and digestive problems. To be fair, I had these symptoms off and on prior to TX, but more problematic since TX. Sure hope I'm not relapsed! I have more energy and less brain fog than before. Sometimes I have problems concentrating and anxiety is more of an issue than ever before. To be fair, again, there have been an awful lot of what I think are negative things going on in my life with my job and family, I'm sure are adding to the stress of all this. Not to mention the couple of medical tests I had along the way that came back abnormal and caused a fright. I won't give up hope that better days ahead for me... and you too Cathy! The body has tremendous capacity to heal, we have to trust that master plan.
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HepC Free you posted this on June 14 in reply to Dragonslayer I thought they were your comments ... when you copy and past someones comments they can be mistaken as yours........ sorry see below this was your post....
DragonSlayer, You sound like a plant from Gilead, otherwise how could you possibly say what you just did -
"For the vast majority, there's no need to wait for more testing before taking Harvoni.. Harvoni is absolutely ready for prime time, and it behooves all who are eligible for this wonder drug to get on board... "
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I finished Harvoni 4 months ago, I am still undetected but have been having digestive problems. My blood pressure problems resolved as soon as I cleared the Harvoni. But now every time I eat I get nauseous within 10 minutes. I went to Mayo and so far they have found nothing. They did biopsies, endo, colonscopy, the works. Still happening. I do get shortness of breath. but I think that is some kind of asthma I was starting to get.
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Hi I am new here but I'm having the same issues at Pat. I finished Harvoni 3 months ago and I am detected after being undetected since 4 weeks on treatment. I have been very sick since I finished treatment. I eat and feel sick within minutes. I have dry heaves and bloat, nausea and burping. I went to the ER last weekend and they found nothing. My doctor thought it might be a stomach emptying problem so I did the test and it came back normal. I felt like going to the ER again this morning but instead went to bed. I have no idea what is going on but I'm ready to feel better. This has been worse than the treatment. Fingers crossed it will all get better with time. I've heard a couple of people who have said it took them about 5 months to feel better after Harvoni treatment...
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I am sorry you are having issues post Harvoni, but apparently we are not alone. I am almost six months EOT. I am seeing on forums many are having digestive issues, me included. My symptoms are not as serious digestive-wise, where I need an ER visit although I have already been there twice due to abdominal pain and heart palpitations. I do feel full after eating only a small amount. I never feel hungry but know I must take in food. and I also occasionally get horribly bloated looking like I am 9 months pregnant.
I continue to have tinnitus, a constant headache, vertigo, neuropathy and fatigue, none of which I had previously and have no other health issues that may be causing these problems. In my mind, they are all a result of Harvoni.
I hope you are all reporting this information to the FDA. Although they have not responsibility to report out until more than a year after the initial release, they need to have the information. I have an FDA report that I obtain under FOIA back in March that lists side effects being reported. Unbelievable what has been reported and not shared with the public. (Email removed)
I pray it is just a matter of time before we really are healed.
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4 months off Harvoni, and also feeling like crap! Not ever hungry, bloaty but the main problem is arthritis symptoms. Pain and swelling in feet ankles, toes, knees. Uric acid levels are high indicating gout. NEVER had this before treatment. And still after 4 months fatigue is ever present. Have we opened ourselves up to future problems with Harvoni?
MoMa
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I started having chest pains about 2.5 weeks into harvoni. I started ribaviran about two weeks into treatment and blamed it as ribaviran related. I stayed in ribaviran for a bit but quit about 6 weeks ago. The chest pain became more frequent despite stopping ribaviran. I am under the care of a cardiologist now and next week I am having an echocardiogram and ct angioplasty. Last week she put me on a low dose of beta blockers which helped a little but the chest pain remained on a daily basis. I finnished harvoni 2 days ago and last night was the first night in weeks I did not have chest pain. I am still monitoring.
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Hey ya'll, haven't posted in awhile. I got SVR12, yay! Was one of the ones who had more uncommon sides and felt bad after treatment ended. I am 4 months post and still have frequent problems with fatigue, cramps, digestion, etc. mostly after over doing things, which doesn't take much to cross that line. I read on a different forum that many attending physicians are disappointed in the lack of quality of life improvements for so many hepc patients who treated successfully. Sure don't know what to make of it, but people who are over a year post are reporting no improvement in level of fatigue. I try real hard not to think about it cuz if I do it brings me to tears.
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Congrats on your SVR12 Whole Foods! That's a major accomplishment right there that will help you for the rest of your life, despite the ongoing post-tx problems. I hope you see some improvement soon in your fatigue and other issues.
Good luck! :)
kim
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Harvoni consists of two drugs: Sofosbuvir and Ledipasvir. I took Sofosbuvir and Olysio. Olysio is similar to Ledipasvir. Before treatment, I had maybe 1 or two heart flutters a year, but during treatment I had numerous severe heart flutters, chest pain and shortness of breath. I actually had to stop treatment at 6 weeks due to the side-effects. I am now 2 years post treatment and still have heart flutters, shortness of breath and indigestion. I cleared the virus and remain virus free, but now I have also been diagnosed with heart valve problems. I'm going to see a cardiologist to confirm this. I have a sneaking suspicion that all of my health issues are related to the hep c medication. It looks like I traded one set of problems for another.
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Dear Skewed. Joint the club of those injured by Harvoni and Sovaldi. There are thousands of reports of problems made to the FDA, yet we hear nothing. (Email removed) I suffer similarly and I am almost 16 months post treatment. Wish I had never taken it. Feel horrible all the time!
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Prior to treatment with Viekira Pak I experienced heart flutters once per year at most. Since EOT I experience them every day. I will say that they are mild, but it is disturbing. I'm not due to see the hep c practitioner until 12th July, so haven't had any followup or discussion with her about this yet. I have put most of my EOT problems down to the effects of Ribavirin rather than the VPak, but now I'm not so sure. I would like to read this FDA report.
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Harvoni consists of two drugs: Sofosbuvir and Ledipasvir. I took Sofosbuvir and Olysio. Olysio is similar to Ledipasvir. Before treatment, I had maybe 1 or two heart flutters a year, but during treatment I had numerous severe heart flutters, chest pain and shortness of breath. I actually had to stop treatment at 6 weeks due to the side-effects. I am now 2 years post treatment and still have heart flutters, shortness of breath and indigestion. I cleared the virus and remain virus free, but now I have also been diagnosed with heart valve problems. I'm going to see a cardiologist to confirm this. I have a sneaking suspicion that all of my health issues are related to the hep c medication. It looks like I traded one set of problems for another.
For many of us there was serious level of risk involved in treating HCV with DAA's. Over the years I have seen a relative die of decompensated cirrhosis post liver transplant, had several acquaintances die of liver cancer, and one individual friend commit suicide because of HCV. So my decision to treat this time around was with the knowledge that there was a slight risk of doing damage.
For those who have cirrhosis and chose to have treatment with any DAA there will be an increased risk of cardio episodes.
This New England Journal of Medicine article from Nov 2015 clearly shows the reasons why http://www.nejm.org/doi/full/10.1056/NEJMc1505967?rss=searchAndBrowse&#t=article
Here is hoping that the majority of those who do experience early onset heart troubles during and after treatment can regain functions as their liver functions normalize. The slow damage done to liver function for many years by HCV also slowly degrades all the renal and respiratory functions and this fact is very easy to forget.
Deciding to treat HCV has never been an easy decision. This is especially true for those of us who have compromised circulation and renal functions.
All the best recovering from HCV and treatment.
Eric