Epclusa Treatment

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Is there anyone out there who has taken Epclusa? I'm fixing to start treatment and would like some feedback.

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When you are starting treatment?

Can anyone that's been on this medication chime in?

The FDA lists the typical side effects as possibly including headache, diarrhea, discouragement, loss of appetite, and nausea.

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Re: Verwon (# 1) Expand Referenced Message

I finished 3 months in Jan; side effects began to like stick to me by the beginning of the 3rd month; swelling for me n nausea, felt a little addicted too; that could have been the habit of taking it at 11am daily. Yet something just isnt right for me n there is no info from the professionals! I'm doing research as much as I can and making adjustments...

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3

I am currently 12 weeks into a 24 week epclusa treatment. It’s been really difficult due to the many side effects, this is my fifth hep c treatment, 3x interferon, one harvoni and now epclusa. Here in the uk most treatments also include ribavirin. I have experienced a lot of fatigue, nausea and limb pain, but the depression is really bad, I can’t get no rest at all. Even on antidepressants, I’m not suicidal but the thoughts are extremely dark. I had to come off the ribavirin after 4 weeks, as I was having panic attacks and severe anxiety. Now I’m kinda wondering if all of these treatments over the past 15 years have caused any permanent physical or mental damage? My viral load has been undetectable since week 4, this was the same with harvoni but the virus returned 4 weeks after the 12 week treatment. It’s been helpful reading your posts, I’m not alone and it’s not all me but the meds.

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Re: Verwon (# 1) Expand Referenced Message

I just started epclusa. I'm 3 days in, and 24 hours after the first dose, I have extreme fatigue, nausea and cramps in my legs. Doctor says most symptoms should stop after 2 weeks, but I spose well see. So far, I hate it.

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5

Im trying to decide if i should start tx, im 65yrs old copd breathing issues ect dont feel sick from hep yet still F1 geno 3 high VL ,would hate to start tx and get sick from it as has happened to some people !any advice appreciated im worried bout side effects due to my age.

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Re: Verwon (# 1) Expand Referenced Message

Just read your article on epclusa,im 65 yr old geno 3 probley since 70s. Recentley diagnosed with copd lung problems ,im supposed to start epclusa next week ,i get anxiety already dont know if my body would handle this powerful med iv heard different stories ,always the same from med clinic no you wont get sick !im not so sure iv heard some pretty scary stories ,i just dont want to start a new tx an get worse then i am .already.anyway hope your tx is going well for you .i have heard some positive stories as well hope it goes good for you...thanks.

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Re: Louis (# 3) Expand Referenced Message

Hi. Just read your article about epclusa ,im in australia ,65yr old geno 3 VL 8mill (scary )i think ,prob got hep back in 70s i guess im suppose to start treatment epclusa next week ,iv recently been diagnosed copd breathing problems ect ,i told the liver nurse she said wont matter theres hardly any side effects mmm iv talked to an read many horror stories regarding epclusa ,i already get anxiety problems drs here dont like evan giving diazapan anymore ! I just dont want to start tx an get sick or breathing or sleeping are harder then what they are now .or my anxiety gets worse. Anyway Louis hope you are going ok !if you have any feedback please get back to me as im trying to find out as much as possible before i have to start this treatment.thanks.

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Re: Jennifer (# 4) Expand Referenced Message

Hi Jennifer hope you are feeling better ,im in aust suppose to start treatment next week ,iv heard different things about epclusa 13 wk tx im geno 3 in my 60s i reckon if theres side effects i will get them ,i dont know if i shud start as i dont feel that bad.recently diagnosed copd that makes me feel crappy dont know if my body could handle more crap of course drs nurses say no side effects mmm i just dont know fibroscan was ok F1 .7.2.i have hi viral load been told flu vaccination can increase VL
Anyway hope your feeling bit better please.let me know what you think of the treatment

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9

I am on day 8 epclusa. I'm geno 3, 65yrs old, prob had virus 40yrs. I felt ok till i started epclusa. Started with ringing in ears now deaf in one ear, i really don't know what to do! My liver nurse reckons she has never heard of ear problems on this. I don't believe her. Can i just stop taking pills day 8? My dr doesn't understand. Advice needed!

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Re: Louis (# 3) Expand Referenced Message

Hi Louis, hope you are feeling bit better.,I finished epclusa 8mths ago no.VL now but still get exhausted easy numb fingers aching joints,also just started getting indigestion often I'm hoping it's not gall stones,my dr.doesnt seem to know much about hcv and very little support from the liver clinic I attended who started me on Epclusa suppose to be so easy,not for me!! Anyway maybe things will improve 66urs old I was geno3 F1-F2 felt ok.pre treatment,hope you are feeling.bit better I'm in Australia,hard to.get any info except for treatment would not cause my.problems,all the best.

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Re: Louis (# 3) Expand Referenced Message

Hi Louis, I'm in Australia,I finished a3mth treatment with Epclusa , finished bout 11 MTHS ago I probably had virus since 70s,I have had heaps of side effects from loss of hearing to body swelling numb fingers toes nausea worried what's next also have emphasemia ,the liver clinic I went to won't admit treatment caused problems mmm ,joint pain every day in legs exhausted so much,I felt better before treatment,how are you going now hope you're feeling better please try let me know ,IV always been skinny now look pregnant lol ,I hate feeling like this ,no support from anybody same old stigma ,would like to compare with you.

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I finished tx 1yr ago,no virus ATM,but feel like my immune system is stuffed felt better pre tx, I had nil support plus every sideeffect ,now I am totally exhausted leg pain nausea numb feet toes possible heart problems, good luck ,let me know if need advice.

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Re: Verwon (# 1) Expand Referenced Message

Hi Verwon. I'm a year post-treatment with still no support. My symptoms are worse, I'm totally exhausted and scared of what's next... Verwon, are you involved in treatment?

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Re: Lou (# 9) Expand Referenced Message

Don't take it!!!! Don't trust it. And if you have ANY CIRRHOSIS of liver, it will kill you!! Poison. Stop taking it. Dr. will say you'll get sicker b4 u get better. It killed my husband in exactly 5 months from start. No cancer in blood or CT; 4 months later riddled with cancer!!! Poison.

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Re: Davoe (# 11) Expand Referenced Message

My husbands belly swelled it was fluid his liver not working right, affected kidneys. He had to get belly drained every 8 days Peritonitis and then needed protein drip. Then blood transfusions. Was put on transplant list long story short. Gone and dr. (Knowing he was in liver failure) tried to get another 12 week round when his blood was clear wk5

I pray for all us victims of these drug companies.

I've lost so many family members to these greedy, soulless companies. :-(

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Re: Sunshyne (# 15) Expand Referenced Message

Hi,really sorry for your losses,I can relate to some of your husband's symptoms,I finished Epclusa about 14 mths ago,so far no virus ,pre treatment I had very high VL,I probley had virus since 70s,pre treatment I was skinny now I have Edema swollen abdomen no energy at all puffy numb feet often nauseas skin blotches muscle aches in legs ,also get body jerks near every day dropped so many cups,I'm in Australia IV mentioned it to liver clinic that assured me treatment would be so easy for me even with high VL ,they just don't care no support at all,I just don't feel like my liver is good since treatment or immune system ,it's like every week new problem ,wish I never touched there wonder med.also constipation sleepless nights ,I can't see things improving.take care as I said can relate.

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Re: Sunshyne (# 15) Expand Referenced Message

Hi,really sorry for your losses,I can relate to some of your husband's symptoms,I finished Epclusa about 14 mths ago,so far no virus ,pre treatment I had very high VL,I probley had virus since 70s,pre treatment I was skinny now I have Edema swollen abdomen no energy at all puffy numb feet often nauseas skin blotches muscle aches in legs ,also get body jerks near every day dropped so many cups,I'm in Australia IV mentioned it to liver clinic that assured me treatment would be so easy for me even with high VL ,they just don't care no support at all,I just don't feel like my liver is good since treatment or immune system ,it's like every week new problem ,wish I never touched there wonder med.also constipation sleepless nights ,I can't see things improving.take care as I said can relate.i also feel like may have to get drained of fluid ,don't know if it's urine ,but don't like feeling also my urine has strong odour ,don't know if it's my body trying to get rid of there wonder meds but don't feel right ,my GP knows very little nor does he care.

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Re: Lou (# 17) Expand Referenced Message

Please go in for MRI on Luver. Pancreas and kidneys. Please??

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19

I took Epclusa for 12 weeks.
It was the worse experience of my life.
I had undetected hep c for almost 40 years.
I was diagnosed with routine office visit.
Over the years I would get very sick for about 4 or 5 weeks. A few times a year.
But I never experienced any hell like I did takubf Epclusa.
I took it everyday as ordered. Same time everyday.
Within 2 hours I felt like I was poisoned.
The feeling lasted about 12 hours.
I had absolutely no energy.
I was confined to my bed and needed help daily to shower,change clothes or eat.
Epclusa gave me a zero viral load but has ruined my life/health.
I am two years out and have so many side effects.
I contacted Gilead many times but never recieved replys.
Please read and reread everything about this drug.
I did not. Also it had only been on market for a few
months when I started taking it.
I wish you good health.

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20

Hi,all I can say is don't believe everything professionals say,anti vitals do seem to get rid of virus in a lot of people ,I feel as if my body has now been damaged immune system stuffed! Near lost hearing neuropathy ECT ,2 yrs Poste treatment,no support from anyone especially liver experts lol.

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Re: Junebug (# 29) Expand Referenced Message

Maybe talk it over with someone ,I did treatment over 5 yrs ago my VL in mills I no longer have virus VL o ,med ill effects I have now maybe would have happened anyway ,I would have liked to been able to.talk to someone get bit of support from gilliard ,I'm not happy with info if any from Liver people seems to effect everyone different ,I just don't know why you ve decided to stop iv heard a lot of good reports also some really bad ,it's just a thing you have to decide on ,good luck

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Re: MP (# 25) Expand Referenced Message

Good luck ,it seems to effect people I different ways ,I no longer have the virus my VL was in millions it is now o I was told VL didn't effect treatment but I can't understand that I always thought VL was to show damage done while having virus ,I don't know if the med problems that I have now would have happened to me even if I didn't do treatment anyway hope everything works out for you.

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What would happen if I just stop taking my Epclusa medication?

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Re: Verwon (# 1) Expand Referenced Message

I did it 5 or so yrs ago ,got rid of virus ,but I feel like it has caused more problems don't believe everything your told look into everything someone is making money out treatment .wish I never touched it.

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Hi. I am 70 years old with COPD. I've recently been put on a new med called Trimbow 100/6/10. Has anybody else had this med? Nothing seems to work for me. I had no breathing problems before I did Epclusa treatment 5 years ago. Any info is appreciated.

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Re: Kathleen (# 19) Expand Referenced Message

Kathleen are you ok ? David from Australia

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So just throwing this out because I doubt many people in my position even find these boards. I am sure I had hep C for a long time, but went acute end of 2020. Thought I was long-haul C19 at first, but then got tested and woot, hep C. My viral loads were in the high hundreds, so I know that puts me way on the low end of spectrum. After a bunch of back and forth (had to get insurance, had to get a biopsy, etc), started 12/22/22 (today is 1/22/23). First 1 - 2 days bad stomach. After that about a week of major fog in the brain for 1 - 2 hours after I took meds. Now, seem to have settled into A. Stomach sucks but not terrible (and it sucked before from the hep so...ehh), foggy brain for 1 -2 hrs after pills, but completely functional. I have some significant swelling in legs/ankles, but had that before I started and it hasn't gotten better/worse (I gained 90 pounds during c-19 so pretty sure that's where that is coming from; dropped 30 off so far). Other side effects: Less appetite, some nights just don't sleep (once every 7 -10 days), that's it. All in all nothing that interferes with my life; I still work, exercise, do my thing. Probably worst part is I really enjoy a cocktail every night and I went cold turkey on that 3 days before I started, so I kinda hate everyone right now but fairly certain that's from my lack of Maker's mark, not the meds.

Just my personal experience. Done on 3/1, hope things don't get bad but no indication they will. Oh, one other thing. First intera-meds blood test 3 days ago; viral at 0. So really hope that sticks.

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Re: Kathleen (# 19) Expand Referenced Message

Hope you are ok, please contact me as worried for you.

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Re: Louis (# 3) Expand Referenced Message

Hi I finished treatment 2 yrs ago,for Geno 3 I'm in 60s,if I had my way I would not touch it,I feel worse Poste treatment,Edema abdominal swelling numb feet really painfully joints leg muscels insomnia continual infections ,what makes it worse is the liver clinic point blank refuse to admit treatment could have caused any problems so called experts I doubt it, it's all $$$ don't be fooled they don't give a darm about you, oh yeah they make sure they mention don't believe anything you read on internet ,IV leannt more on line from people all over world,it's impossible to find out how many people now have major problems from Epclusa ,Harvoni,or how many have died.unfortunatley my dr rings them if I have a problem and gets told same thing oh treatment would not do that.lol ,there's no come back once you have started there DAAs ,it may cure the virus on a lot of people but also damages ,they don't tell the truth.good luck to everyone .

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Re: Kathleen (# 19) Expand Referenced Message

Kathleen,I don't know what to do I try to send message ,but it says the heading we communicate on is page 9 of 9.?? Does that mean we can't communicate on this heading ?

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