Author Topic: Poll; how many people feeling bad after Harvoni? (Read 21239 times)

Mike Conwell · « **on:** August 26, 2016, 09:00:36 am »

I myself finished March 25th last year and feel much worse now than before Harvoni

Lynn K · « **Reply #1 on:** August 26, 2016, 02:51:21 pm »

Not me feel great. Finished treatment 4 May 15. Liver functions all in normal range first time in 37 years. Only test out of normal is platelet count and even that has improved a little. Odds of dying soon greatly reduced as is my risk of liver cancer.

Sorry you are having a difficult time hope your doctors can find the reason and provide you with relief.

FutureThinker · « **Reply #2 on:** August 26, 2016, 03:02:40 pm »

I'll weigh in on this, as I am now 3 months post treatment. I feel significantly better than prior to treatment w/ Harvoni. My primary complaint at this point is a lack of consistent energy, but it is slowly improving. I am so sorry you've had such a negative experience with your treatment, Mike, but mine has been uneventful.

I hope you've let Gilead and the FDA know about your post-treatment issues, as they need to know. I sincerely hope this is a temporary time for you and your health improves very soon. Take care, FT

Baxter · « **Reply #3 on:** August 27, 2016, 03:46:19 am »

I'm really sorry to hear you're out of the frying pan and into the fire, Mike. For what it's worth, I'm 11 weeks post tx and haven't felt this terrific in 20 or 30 years. I've had a few outbreaks of hives the last several weeks, which may or not be connected to the Harvoni, but aside from that nothing but goodness. I'm feeling healthier with each passing week, which suggests to me that my liver is healing.

Good luck to you... I really hope this turns around for you. Very sorry to hear about this.

brie41 · « **Reply #4 on:** August 27, 2016, 08:49:30 am »

Hi Mike,

What symptoms are you having? I finished in May and now feel really good most days. Just some pain in my feet that I didn't have before. Brie

Mike Conwell · « **Reply #5 on:** August 27, 2016, 09:07:29 am »

Legs, neck, hands, headache, mind feels wigged out all the time. Had lower back surgery after treatment, waiting on neck surgery. Hands cramp and draw up all the time, fatigue, weakness in arms and legs. Must I go on? It is unbearable and getting no answers from Dr.

Lynn K · « **Reply #6 on:** August 27, 2016, 05:03:59 pm »

I do get leg, foot and sometimes body muscle cramps but was having those before treatment. In my case I believe my cirrhosis and the durietic I take for edema from cirrhosis for the last 8 years to be the likely cause.

Best of luck to you

crabby old guy · « **Reply #7 on:** August 27, 2016, 10:29:10 pm »

Hi Mike,
Sounds like your getting bombed with alot of crap all at once, is your neck surgery going to be a fusion? some of the symptoms your having sound like they could be related to your neck problem. Might want to look up a DERMATONE MAP.

brie41 · « **Reply #8 on:** August 28, 2016, 08:53:23 am »

Hi Mike,

Wow, I can't imagine how terrible you must feel. Sorry for all you are going through, whatever good that does! Brie

Mike Conwell · « **Reply #9 on:** August 28, 2016, 09:19:03 am »

I feel that this drug is still eating away at my body. Bones, joints, muscles,brain etc. It's my own feelings but I know a lot of people are having the same problem. That is the people I want to message me so I can take it to my lawyer before this drug takes a lot of us down. Those is you that don't fit in this category please don't send your smart ass comments. I don't need them. I need to see how many people are having problems. This has been horrible for me and only gotten worse in the last 16 months since EOT. Please no condescending messages. I'm very happy for the ones that the drug didn't harm and made them better. The ones that are like me I feel sorry for. It's horrible!!!!! Please only people that are having problems message me.

crabby old guy · « **Reply #10 on:** August 28, 2016, 12:20:52 pm »

Mike,
I'm sorry for what your going through, I am not being condescending or a smart ass! I had lower back surgery 15yrs ago and now I'm looking at a fusion because it has gotten worse. I'm also looking at a neck fusion somewhere in the futer. I've done a lot of research on both so I was giving my opinion on something I thought might be of use. That's what this forum is about. Your point is well taken, I will not replie to any more of your posts.

morab · « **Reply #11 on:** August 28, 2016, 07:58:22 pm »

Mike Conwell
Count me in your boat for now or until I get better. Swollen ankles, pain in feet, hips, low back, wrists and neck. It does not take much to flare up my wrist pain to the point I can barely hold a cup of tea.
Sever fatigue, not every day but after one good day of getting simple things done like dishes, laundry and sweeping/mopping I will be laid up for days afterward.
I have been unable to work. I am self employed so no benefits to rely on in that area and the work I do is labor intensive, I don't see that happening, unless something changes.
Keep in touch with how you are doing, I know there are a few others on the forum who may eventually feel well enough to find this post and add their names to your list of people who were and still are SYMPTOMATIC on and after treatment!
Most of my mugs are broken and I am a potter who really wants to return to work!
Morab

Mike Conwell · « **Reply #12 on:** August 28, 2016, 08:17:28 pm »

It has to get better!!! I'm having neck surgery in 2 months because they say the holes the nerves run threw are growing shut. I didn't have these problems before the Harvoni. Scary what this drug is doing to some of us.

morab · « **Reply #13 on:** August 28, 2016, 08:30:12 pm »

Mike
I got a positive marker for RA (an autoimmune arthritis}, next will be testing to see if I actually have it. I can't afford the co pay or travel expense for another specialist right now so hoping my GP can do any further testing!
My GI specialist who put me on Harvoni never scheduled any follow up, nor would his office return any of my calls when I was suffering on tx. So my PCP took over and has done and will continue to do all my testing. That is itself should not be legal!
Left me high and dry on Harvoni?
I do hope the others here who are still suffering will step up and speak out!
Morab

KimInTheForest · « **Reply #14 on:** August 29, 2016, 12:30:06 am »

Quote from: Mike Conwell on August 28, 2016, 09:19:03 am

I feel that this drug is still eating away at my body. Bones, joints, muscles,brain etc. It's my own feelings but I know a lot of people are having the same problem. That is the people I want to message me so I can take it to my lawyer before this drug takes a lot of us down.

Mike, since you are collecting names & stories of people with post-treatment problems that they attribute to Harvoni, I wanted to show you this link: https://www.lawyersandsettlements.com/articles/harvoni-denied-insurance-claim/harvoni-lawsuits-denied-insurance-claim-3-20791.html

The article itself is about lawsuits filed over Harvoni pricing and people being denied access because of high price. HOWEVER… Virtually all of the comments following the article are from individuals claiming Harvoni left them very ill and, in many cases, gave them cancer. Often liver cancer, but also at least one mention of breast cancer, and one mention of anal cancer. Whether their assertions are true or not is another matter. But it is certainly a pool of people to look at.

kim

morab · « **Reply #15 on:** September 02, 2016, 05:54:44 pm »

http://www.fda.gov/Safety/MedWatch/

here is a link to report to the FDA.
I am sick of the physical pain brought on by taking Harvoni. We were not told the truth about this drug and it feels like no one is following us after treatment!

chaser · « **Reply #16 on:** September 02, 2016, 09:20:06 pm »

I had posted here intermittently as I undertook my Harvoni regimen. I am now over 1 year clear. Stats, the easier genotype, treatment naive with no liver damage. Personally I felt more tired, but a good type of lazy, not beat down tired for about 3 months after clearing. Today I feel, at least I think, as good as most 65 year old males can expect to feel. I ache sometimes, but at my age, who would not. Harvoni has made me whole for the first time in decades. One size does not fit all. The other regimens either worked or made you worse. I hope your issues are answered. And I hope you do not suffer. Personally my experience tells me I added years to my time here. Without Harvoni I know I was facing an eventuality that was not pretty. Now that hep-C is gone, may something else end me. Good luck. Vaya con dios.

WholeFoods · « **Reply #17 on:** September 03, 2016, 01:17:32 am »

Quote from: Mike Conwell on August 26, 2016, 09:00:36 am

I myself finished March 25th last year and feel much worse now than before Harvoni

I finished a month after you and am sharing many of the same symptoms. I have been tracking since the first of the year and save maybe a few days here and there that I missed;

January - 6 sick days, most being towards the end of the week.
February - 3 sick days, again mostly end of the week.
March - nothing, or maybe I gave up tracking, but looks like no sick days?
April - 3 sick days, same .. mostly end of week.
May - 2 sick days
June - nothing
July - 4 sick days, mostly end of week
August - 1 sick day, weekend

My only guess is that it is either stress related or there's something at work making me sick; dust, pollen, mold, other people, etc. I do know that immediately after treatment, I had NO stamina at all. I spent a lot of time on the couch. Now, I just get bad headaches, muscle spasms in my upper back and shoulders and many times diarrhea. Sometimes I can go on with my day, most of the time I'm down for the count. This got worse during treatment and hasn't let up.

I have tracked a couple trial people who, one is still having pain 4 years later and has given up on being pain free, and the other got noticeably better after two years and some aggressive immune support. Called 'Reset'.

I'm going to get serious about taking some daily supplements, so will likely go with Code multi and some extra D.

Don't know if you've had any extra testing, I had a chest X-ray, ekg and ct in addition to the routine blood tests taken during treatment which included thyroid. Nothing was ever too abnormal.

dragonslayer · « **Reply #18 on:** September 03, 2016, 08:50:42 am »

Quote from: Mike Conwell on August 28, 2016, 08:17:28 pm

It has to get better!!! I'm having neck surgery in 2 months because they say the holes the nerves run threw are growing shut. I didn't have these problems before the Harvoni. Scary what this drug is doing to some of us.

Mike, Im confused... In another post, you claim you DID have your neck issues before treatment:

Quote from: Mike Conwell on April 03, 2015, 07:54:21 am

I have 12 pills left and have the back pain but my biggy is the neck pain. I had it before tx so I believe it was from the virus and it will take time to get over. my VL was 11,000,000 so I was pretty high. don't believe a virus and its affects are just going to disappear. Time will tell

How can you be blaming Harvoni, warning people away from a lifesaving, mostly symptom free drug, for symptoms you had before you even took it?

Luna7 · « **Reply #19 on:** September 03, 2016, 12:14:27 pm »

Mike, I think what you are saying is that you had some pain in your neck and back before treatment but not to such a severe degree as they are now (where your bones are growing together on your neck and causing excrutiating pain)?

My bones appear to have started growing at a rapid pace as well during and after treatment and I developed a bone spur on my knee that keeps me from bending it. I can barely get up off the floor if I bend down, as along with the horrific pain there is extreme weakness.
Same with my lower back -- I had some pain before but one day the pain was so severe I could hardly get off the sofa. Along with the knee pain during those 2 days and the severe sense of feeling so incapacitated I wondered if I even wanted to be alive.
I have a new appreciation for those with severe cases of osteoarthritis and RA.

Bones do lay on more bone in an attempt to repair injury. Suddenly the source of bone disintegration (the inflammation in HCV) is gone with treatment, and my best guess is that those of us experiencing joint pain seem to repair bone injury "too well". Or else there is something in DAA's that actually affect bone growth.
It appears that for SOME people cutting off inflammation so suddenly is not a good thing.

I can certainly understand why you would warn people away from DAA's having experienced how painful this can be!
For me, at this point, I would warn people to be very cautious about taking direct acting antivirals if they have joint pain.
However, if the bones start growing together on my neck as you are experiencing, or if I consistently feel as bad as I did during those 2 worst days I'll be on the same page as you. I would feel the numerous benefits I've felt since treatment would not be worth all these new symptoms.

** I took the Sovaldi that is part of Harvoni, along with Daklinza.

SongofLove · « **Reply #20 on:** September 03, 2016, 04:37:27 pm »

Hello everyone. I took my last Harvoni pill Aug. 3. I went through 12 weeks. Few sides. Not bad. Felt ok for 2 weeks, but now at 4 weeks out its getting tough. I was wondering has anyone been tested for candida overgrowth? Same kind of symptoms. Strong relation to RA also. Just a thought.

Luna7 · « **Reply #21 on:** September 04, 2016, 11:08:54 am »

SongOfLove, what are your symptoms?
I'm trying a new low-carb diet, posted over in the Harvoni And Me thread that I've heard helps RA and Candida.

Storyville · « **Reply #22 on:** September 04, 2016, 12:31:32 pm »

I am 4 weeks post treatment and have had severe side effects since week two of treatment . My shortness of breathe has gotten worse and I am seeing both a cardiologist and an attorney next week. I do not believe that either this drug has been tested properly or the long term side effects are not being reported because Gillead is more focused on sales. Prior to harvoni, I had little to no symptoms from hep c now after treatment, I feel my life has been drastically changed for the worse and may be ultimately shorten.
For those of you who have come out of post treatment with flying colors, than congratulations but do not condem those of who have been hurt by this drug.
Hopefully, after meeting with the cardiologist this week will clarify the status of my heart and if it has been damaged.
Report up date later .
Bill

SongofLove · « **Reply #23 on:** September 04, 2016, 03:16:12 pm »

Thank you Luna7. I have started mine, but i will check it out. Just wondering if candida is the reason for this diet for you?... The reason i posted on this thread is because i'm 4 weeks post and dont feel good at all. I've been monitoring this site for a year or so.So i was ready for post treatment issues. I also know that it may be months before i feel better. Not a pleasant thought. I'm not connecting any dots to anything. I discovered i have a systemic candida problem. When i researched the symptoms for systemic candida, i was blown away. Most doctors dont test for this, but will upon request. I would advise everybody, on treatment or post, to look into this. Meantime i'm on candida diet waiting on 12 week post test. I had a candida problem after failed 6 months of peg-interferon treatment also. Please research the connection candida has to RA and auto-immune issues.

Luna7 · « **Reply #24 on:** September 06, 2016, 12:43:00 am »

Quote from: SongofLove on September 04, 2016, 03:16:12 pm

Thank you Luna7. I have started mine, but i will check it out. Just wondering if candida is the reason for this diet for you?... The reason i posted on this thread is because i'm 4 weeks post and dont feel good at all. I've been monitoring this site for a year or so.So i was ready for post treatment issues. I also know that it may be months before i feel better. Not a pleasant thought. I'm not connecting any dots to anything. I discovered i have a systemic candida problem. When i researched the symptoms for systemic candida, i was blown away. Most doctors dont test for this, but will upon request. I would advise everybody, on treatment or post, to look into this. Meantime i'm on candida diet waiting on 12 week post test. I had a candida problem after failed 6 months of peg-interferon treatment also. Please research the connection candida has to RA and auto-immune issues.

I hope you start feeling better soon.

No I don't have a candida problem as far as I know, but years ago I did investigate that due to the severe brain fog that I was experiencing that is such a major symptom of candida. Fortunately the HCV treatment helped with the brain fog immensely, along with reducing the fatigue and general sickly feelings. Only my joint problems became worse and am not sure why that is at this point.

It does seem that ridding the diet of sugar helps so many problems, and for me I even need to minimize fruits and high-carb veggies lest I feel worse and gain weight.
I'm gearing myself to get really strict with it again, and hopefully it will help with the joint problems too.

jakas · « **Reply #25 on:** September 07, 2016, 08:50:52 am »

My request to all of you PLEASE PLEASE update your forum profiles it becomes so much easier for us to know what you took etc. etc.

jakas · « **Reply #26 on:** September 28, 2016, 03:44:30 am »

6 months + now after harvoni. Right flank pain, bloating and general discomfort in the abdomen continue as before Harvoni. MRI in mid November so will see whats going on

Lgriding · « **Reply #27 on:** January 29, 2017, 03:37:53 am »

I was diagnosed with hep c 9 yrs ago from being stupid one time and caught it from the very first time doing drugs that way and was lied to about the person being clean and I really didn't know about hep c but I definitely do now, I always felt pretty good and I was told I was perfect for taking hep c and so far I'm told it's not detectable but 5 months after taking harvoni for the 90 days I feel way worse then I ever have. I don't even feel like myself anymore. I wasn't explained bearly about harvoni except it had high results of working and I seriously wish I never took it and don't wish this on anyone. I would of rather of lived with the virus and been happy then to feel like this, thank you and I really would like to hear if anyone else is feeling this way

Lynn K · « **Reply #28 on:** January 29, 2017, 05:45:27 pm »

Hi Lgriding
So sorry to read about your problems. Have you asked your regular doctor for help with your symptoms have you had any testing done to try to find out what is happening?

If you could describe the kinds of symptoms you are experiencing I am sure you might get some helpful information.

Best of luck to you and I hope you find answers soon and begin to feel better

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Author Topic: Poll; how many people feeling bad after Harvoni? (Read 21239 times)