Long Term Side Effects Of Harvoni (Page 12)

Updated

I had Harvoni treatment last spring. I am not the same. My nervous system is a wreck. My anxiety problems have increased, depression and lack of motivation. My eyes changed drastically. My thoughts are not focused, I am nervous all the time, can focus or sleep. I had a 2 month migraine. Ringing in the ears is intense. I also was on pigalated interferon and ribivirn, I was pulled off mid treatment because I got so sick. After that treatment, I also had long term side effects. There isn't any back support for post harvoni people, nor are their anyone specializing in the after effect of long term HCV infection, it is NOT just a liver disease, it effects the nervous system and all else. I am at a loss for support with the doctors in my area, none seem to want to do any research and they don't have enough people in individual offices to report they have patients with long term problems. In our groups there are many with long term side effects. The doctor's try to pin it all on other stuff without really knowing. They just aren't listening. I know my body, I know the changes I have experienced. I am just really disappointed that there is not knowledgeable people out there for post HCV and post treatment hcv survivors. I need a support team that listens, they don't. I have extreme frustration to the lack of support after treatment.

263 Replies (14 Pages)

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221

Re: Enoughalready (# 212) Expand Referenced Message

I guess nothing to worry about. Elevated does not mean high. I'm miserable at any level. I'm bound to try and stay positive that things have got to get better after I'm done . I guess I just have to wait and see . 18 pills to go. I still do not consider this a gift by any means. Thanks for the interest.

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222

Re: Dan (# 218) Expand Referenced Message

dan, I have tried posting their website twice, I am wondering if it is not being accepted to post this information
See if you can find Flemming Law Firm in Texas?

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223

Re: Cieira (# 217) Expand Referenced Message

Yes. You send your message to them via their website.

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224

Elizabeth (# 222) --

Yes Elizabeth, I did the online form and then the next day the chat. I will have a call from paralegal on monday.

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225

Re: Cathy (# 214) Expand Referenced Message

Well it's been over 24 hours and NO one has called me as they said they would. I'll give it another day and if no one contacts me, I will start becoming suspicious.

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226

Cathy (# 223) --

I called them today. They called back within an hour and they are sending me paperwork to fill out. They are collecting information and names. Dozens have talked to them already.

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227

Cathy (# 223) --

I was emailed by the paralegal team, they are out of the office until Monday. Don't give up hope, I really think next week we will be getting our phone calls.

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228

Re: Dan (# 219) Expand Referenced Message

Dan, move down the list to I think #209. The link is posted there. Good luck.

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229

Cieira (# 221) --

Ok. I’ll do some research and let you know about this attorney.

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230

I called them again today and asked why they didnt return my call. I took epclusa, which is the same thing as harvoni except it has another medicine in it. The secretary told me maybe they couldnt use me for a different medicine. I think they need to look at the ingredients. They are the same medicine. Epclusa effects peoples nervous system more. Hopefully the secretary doesnt know what shes talking about. Gilead makes both of them. She said the lady i needed to talk to is out till monday. They need to realize epclusa is just as bad and basically the same medicine. Sofosbuvir 400 mg and Velpatasvir 100 mg. If they dont help me im gonna be so upset. I lost everything because of what this medicine did to my brain!

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231

Re: Cieira (# 228) Expand Referenced Message

Thanks. I found the link and will try to contact the law group. If I have any success I’ll post an update.

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232

Re: Enoughalready (# 212) Expand Referenced Message

What kind of pain do you have? My husband has had pain for 3 years now in his stomach.

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233

Re: Skpp930 (# 230) Expand Referenced Message

call them back and explain, that Epclusa, Sovaldi, and Harvoni all have the same drug in them at 400mg,,,,it is that sobosfovir that is killing us,I think it had side listed when owned by the previous company...it's damaging us,,it had it's own list of side effects never listed after it was bought , I think, from Pharmacet by Gilead...they changed the name of it,,,made a new cocktail ,,,and listed 2 side effects.......head ache,,,nausea.......bulls***

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234

Re: Dan (# 231) Expand Referenced Message

I received an email today and they asked when I would be available to discuss my case. I told them anytime tomorrow morning...that is Friday. I'll post an update if there is one.

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235

Re: Cieira (# 233) Expand Referenced Message

I texted them again this morning and tried to explain what's in these medicines. I hope they contact me back. I'm not gonna leave them alone till they help me!

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236

Re: Cieira (# 233) Expand Referenced Message

Gilead bought Sovaldi from Pharmasett and created Harvoni (Sovaldi + Ledipasvir) that cured genotype one and it was approved by the FDA in October of 2014. Gilead’s Epclusa (Sovaldi + Velpatasvir) was approved by the FDA over a year later for the treatment of ALL GENOTYPES.

I was well aware of the risk I was taking because we were the first to use these medicines. I believe studies must be done to figure out how to help those of us with long term side effects. Most who have taken this medicine have no long term side effects and their health has greatly improved.

If you would like to learn about the development of Sovaldi, read this article.

newyorker.com/tech/elements/a-better-treatment-for-hepatitis-c

Despite my current suffering from the long term side effects, I am very grateful I was cured and I’m grateful to Michael Sofia.

I am focusing solely on figuring out how to recover now. I’m not sure if I will participate in the lawsuit, but I HAVE inquired with the law firm. If a lawsuit is needed to get the medical establishment to help us, I’m in.

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237

I received a phone call this morning from the Flemming Law Firm. They are sending the paperwork.

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238

Everybody that took epclusa, Please call George Fleming if your still having side effects. They are looking at harvoni cases. They said I was the first epclusa patient to call. If you are still sick from this poison call 1-713-621-7944. They need more epclusa patients to call. Please call!!!! This may be our only chance. The female lawyer there is handling these cases, she is very understanding and realizes harvoni and epclusa have the same medication in it! It's been 1 1/2 years for me and my nervous system is still messed up. WE NEED HELP!!!!

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239

Re: Skpp930 (# 238) Expand Referenced Message

I got my phone call today from the law firm, they are also sending me some forms to fill out. This is not a class action law firm, Each case will be looked at as individual so I am not sure what our outcome will be. I am going to get an mri scheduled as I have not had one since treatment, and now so many cancer cases coming up, even though i have a normal liver b4 tx really doesn't seem to matter any more. Cases of cancer are coming up constantly at this point. I did have MOHS treatment for basil cell this spring and now have more popping up. So get ur skin checked too.

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240

Well I have finished Harvoni 3 days ago. I don't mind saying "thank God"!
That last bottle or last 3 weeks were hell. Constantly sick and the burning in my stomach was awful. Not really pain in my back or legs as much as depression and generalized uck. After the first 4 weeks the hcv was undetected which I was thankful but the rest of the time seemed like sickness and downhill feelings took over. I'm sure my girlfriend got very tired of hearing me complain of my many ailments. I have mixed feelings ever taking it and really think there should be clinics or appts just dealing with the many ailments and complaints from beginning to end for this regimen. I still have numerous side effects and wonder will I ever feel right again. Good luck to all who remain.

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