Hep C Discussion Forum

Tig · Admin

RE: 6 MONTHS POST-HARVONI TREATMENT (MAJOR FATIGUE, MUSCLE SORENESS, BRAIN FOG, etc.)

wmlj1960 · Moderator

Bywater Babe wrote:
What is EOT?

A list of forum abbreviations are in this thread. (Scroll to the first post by mallani).

"EOT" is in the list = 'End of Treatment' smile

Bywater Babe · Newbie

Hey Rufus, I'm glad to hear you are doing better... What is EOT? What does it stand for? My last post was a novel, I know but the program dropped me cuz apparently they think I have money. So I haven't received any follow up tx, nothing... I am non-detectable but that's pretty much all I know. So you have been off the meds for 1 year? That's awesome! I called Gilead Pharmaceuticals, spoke with a lady on the phone explaining my situation, and never heard anything back... Nice, huh? Thanks for the info, talk to you soon!

Rufus1 · Member

Hi, Babe Its been 9 months EOT and almost a year of undetectable I had pain in hands and feet which have subsided not much fatigue left I have some lazy days I have some ringing in ears. I am waiting for viral load from last Saturdays labs should be soon. I think it will just take time for our bodys to start running correctly after treatment. This forum got my thru my tx and for that I am great full. A

Bywater Babe · Newbie

Well hey y'all, Happy Holidaze and thanks for responding so quickly. LOL, that's where I live in NOLA, about 5 mins. from the French Quarter... I totally forgot I wrote that bio,seriously...When I read "dyslexic yoda", I LMFAO!!! When trying to desrcribe/explain how "it" (being on the medication" feels, I also compared it to being a paranoid schizophrenic who is developing Alzheimer's... LOL! I did admit to stalking y'all every month or so, so I kinda feel like I know y"all in a way. We are all members of a small group of people who actually know what this feels like, don't despair. I do not believe sleeping pills (or any other drug) causes the fatigue, it's the Harv. My fiance' showed me an article where the man was finally feeling good, and that was at like a year. 3 years post tx, he said he felt better than he had ever felt before in his entire life, which is pretty ****in awesome I think! Ooops, can I do that? If not, I'm sorry and will not do it again. I moved into a new house with a new fiance'about a week after starting tx, so I was under extra stress, but our loved ones do not realize how this feels. They simply can't, although they try. It is something no one can possibly truly understand unless they've been thru it, so we are all pioneers, I'd say! I think I started feeling crappy again about the same time you did... But it would come, and all of a sudden I'm exhausted and then it would pass. Then over time it got worse and worse, now I am feeling exhausted like daily. But the mental side effects are pretty much gone, as I said I was talking to the doc telling her I needed to put on some weight. So she wrote me a script for an antihistamine called CYPROHEPTADINE, it is used for erectile dysfunction, among many other things... Well, side effects include delusional thoughts, paranoia, hallucinations, and suicidal thoughts. I felt like my pic on the forum! And my parent's were SO happy for me and my fiance', they bought us a house ( the home is in my name though ). I had a very low viral count, and the doc said I probably didn't need the entire 8 weeks, but had to take the 8 weeks cuz of the program. Well, shortly after I got my 2nd months worth, I received a letter from Gilead basically telling me I was no longer eligible and if I wasn't finished my TX, sorry! Yep, they dropped me like a hot potato and I am not happy about it at all. It is wrong of them to not give a crap about me after I've taken their experimental drug. I'm new to computers, so please bear with me... Also I just accidentally unsubscribed to this forum LOL, I'll get back on. The man in the article also said " It was like taking 2 steps forward, then taking 3 back ". But my loved ones finally realize how much this has affected me, when I was on it I could be HORRIBLE! So, I will close with this... Take it one day at a time, one second at a time if you must. Set realistic goals and expectations for ourselves, and trust ourselves. We know more about it than the doctors do. And we are all alive, and life is beautiful. And no matter how bad we think we have it, someone out there has it worse. I agree that women seem to go through it a little worse than men do, I wonder why that is? Thanks for the warm welcome y'all, we are all gonna be just fine.

Jaded · Senior Member

I've had the same experiences and made a thread about this last week. For me it all started about a week after EOT...but I seem to be doing better the last few days. I'm 8 weeks EOT. ..it seemed to come out of no where. I'm curious to know when this fatigue kick-in for you? I though it was getting better at about the 5th week but it was short lived ( a few days maybe). Although as I said I am beginning to feel better I'm still on egg shells and afraid to be too relieved as I'm not certain it won't return. One thing I decided to try was to ween myself off the rx sleeping pills I have been using for the last 20 years. All I take now is 6 mg of melatonin which I hope to cut in 1/2 soon. It's possible that the other sleeping pills may have caused me fatigue or at least contributed to it. I had muscle aches before tx...I tend to think it was from my earlier tx of interferon and ribaviron...and or hep C...so I'm used to dealing with that. It seems to be different for some. I was really expecting to have a great boost of energy after tx instead of the opposite...but maybe it's just how it goes and needs time. We don't know what we took and if any damage was done which if so is hopefully reversible over time. My Dr is trying to tell me that it's not common...but I tend to see that it's far from unusual. All I know is that if I didn't clear the virus at some point in probably the not too distant future...I'd be dealing with much worse. All I and we can do is take good care and hope for the best for the future. Hang in there Baywatch Babe...err Bywater Babe.

-- Edited by Jaded on Saturday 26th of December 2015 06:47:18 AM

wmlj1960 · Moderator

Hi BB.

As Tig said we have had several members that experience worse side effects than others, and to me it seems the worst may pertain more so to females. That is not any type of proven statistic but only a personal observation of mine based on some of our forum members. Personally I have 13 more days left out of 24 weeks of Harvoni and so far have experienced very few side effects other than some fatigue, occasional insomnia, and some muscle and bone aches that could be due, in part, to health factors other than Harvoni or Hep C. I had also treated with 24 weeks Sovaldi / Ribavirin in 2014 and I experienced way more side effects with that regimen including fatigue, brain fog ("unable to remember things" and "an inability to word things properly/or in the right order-kind of like a dyslexic Yoda!" like you describe in your biography), and muscle / bone aches. I continued to experience these well into 6 months after end of treatment. Evidently it's going to be a similar scenario for some with Harvoni but I do hope and expect the discomforts to subside eventually like they did for me with Sov / Riba.

Also, I have taken better care of my body during this past 24 wks of Harvoni as opposed to my 24 wks of Sov/riba last year and I strongly feel like that is one big factor in why I've done much better as far as side effects this time. So don't forget the basics of taking care of yourself. Proper diet, adequate hydration and sufficient exercise is very important in determining how well our body's feel.

Welcome to the forum. I'm glad you found us and there will be other members along to share their experience so make yourself at home and feel free to ask any questions. If you need the definition for the abbreviations used on the forum and in member signatures, and help with creating your own signature then you can find that information here:

Forum Abbreviations Link and Help with Creating your Signature

Enjoy!

Tig · Admin

Hey BB,

Welcome to the forum and the SVR Club! I'm glad you introduced yourself, but sorry to hear your success has come at the cost of discomfort. You're not alone, we have had several discussions regarding this and are keeping track of similar complaints. Seems some have no post treatment side effects and others can be quite severe.

I was on a different treatment, so can't comment about it personally, but we have some that will be along shortly. We have a lot of helpful people here and I hope we can provide some ideas and options. Seems the people that are experiencing problems, see relief, but it takes more time than most of us want to wait. The treatment itself is so new we don't have many members that are a year or more SVR with the all oral DAA's. The next couple of years will provide so much more real world data on the post treatment phase. Be sure and keep your liver doc updated on your progress. They need to know this stuff.

I do suggest you contact Gilead Patient Assistance and report your symptoms. They are often interested in hearing from their customers (patients). Use our search function and you'll find some discussions we've had on the topic. If we can answer any questions, don't hesitate to ask!

Bywater Babe · Newbie

Merry Christmas To Everyone! This is my first time actually posting on this forum, although I have been checking it out sometimes. I am a 41 year old woman who was first diagnosed approximately 8 years ago but I had no symptoms and no idea. Had surgery to fix a broken nose and woke up to "Hello there, you have Hepatitis C." Anyway, I felt fine so I just decided not to deal with it until necessary. My primary care physician is amazing and means so well, she wanted me to participate in a PAP ( Patient Assistance Program ) where I received the meds for free... So I became a lab rat. I was also put on an antihistamine called Cyproheptadine ( IT WAS AWFUL FOR ME ) so I quit taking that during treatment. I had a very low viral count, did 8 weeks of Harvoni, and that was 6 months ago. Just like all of you, after a couple of weeks I was doing fine. Now I have been extremely fatigued, my muscles and bones are aching, and I pretty much feel like ****. I have also had a cough for about a month now, I'd gotten a bad cold. I was hoping to get some info, advice, and insight into what kind of time frame I should be expecting to feel this way. Hopefully, I'll be able to help someone else in here too. Thanks you guys and a Merry Christmas to all and to all a Goodnight!!!

BB (Bywater Babe)

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