Epclusa Ruined My Life (Page 5)

Has anyone experienced severe anxiety, constant crawling feeling in body after epclusa treatment. Its like my brain and body aren't working right anymore? I had terrible side effects. Finished in January, now it's June and feels like I'm still taking the poison.

REPLY

REPORT

Re: Lou (# 79)

Hi. Dont have any feet problems. Not pain either...yet. Because of the hep c I now have Cirrohis which is a death sentence. Because I had hep c for almost 40 years undetected I progressed to Cirrohis. So some of my symptoms are related to that. I feel like Gilead measures their progress in the elimination of viral load. Their concern for side effects are not important. Hot in California too. Running a/c all the time. The heat is overwhelming with my health issues. I hardly leave home anymore as I overheat and feel exhausted. I hope you have good days. I think if you often as you and I have communicated often through our hellish battle. Take care.

REPLY

Was this helpful? 0

Re: Kathleen (# 81)

Hi Kathleen, how you doing? Hope feeling not too bad. It's starting to warm up a bit over here. I find heat really hard to take. In fact, a couple of times this past few weeks I've driven to shops, felt ok, then after walking to an appointment or shops I find myself totally exhausted hardly being able to walk! I find a seat do some slow breathing and start feeling ok again very slowly. I don't know if this is brought on by stress or something else. My dr isnt much help. He says "You must do things slowly, maybe having the virus since the 70s or 80s has caused you to feel like this." I don't think so as I felt pretty normal pre-treatment. I just don't know. I think maybe the sudden hot weather and jasmine in bloom plus smoke from fires who knows. It actually scared me a bit when I had trouble walking all of a sudden. Do you find air con helps you feel a bit better? I'm trying to decide whether to get it. It's pretty expensive over here and would like to know what you think. I've just got 2 fans atm and they're ok. Hot weather really effects me.

REPLY

Was this helpful? 0

Re: Lou (# 82)

We seem to have exactally same results from Epclusa.
I cant take the heat.
I am exhausted just walking to car.
I can not do errands any longer ad there is no energy left in me.
I also had hep c since 1979 when was given tainted blood.
I only started feeling this way after epclusa.
My doctor also blows off my concerns.
We need to realize they get kick back from gillead for every script they write.
During my three montd on epclusa I never saw a doctor. Was just another lab rat.
I would advise you to use air conditioning.
It really is a great way to ferl a little better.
My thoughts are with you.

REPLY

Was this helpful? 0

Re: Kathleen (# 83)

Thanks Kathleen, I'm the same the 3 MTHS I did treatment I never saw a Dr or nurse ,no support at all ,I think when I started treatment and had hearing problems 2nd week, they should have looked into it to see if maybe I wasn't suited, maybe in a perfect world ,lol I'm hoping that this sudden shortness of breath is because sudden heat change of seasons ect, IV had 3 different drs in 5mths lady I had first was good she was retired but still worked 2 days a week ,but she had been around and was concerned about what was happening,unfortunatel she had to stop working due to ill health,she was replaced with a lady from England ,she also was concerned about my side effects ,by this stage I was getting sick of telling my story ,at least she gave me something for my anxiety and not sleeping, ended up she was called back to England due to sickness in family,now my current Dr looks like a kid straight out of med school ,he seems to get all his info from Gilliard and seems very uncaring , nothing for anxiety just tells me to excercise and maybe try phisios appointment IV tried that didn't do anything at all,great hearing from you ,I'm sorry to hear heat effects you too.!! Take care ok

REPLY

Was this helpful? 0

Re: Kathleen (# 83)

Hi ,hope your not getting bad effects from the cyclone ,the pictures on TV looked terrible ! Those poor people ,I think the climate is getting extreme ,Do you know of any information about results or people over say 50 yrs old ,who have done the treatment and are now getting serious side effects from it,?IV been trying to find something on Google but having no luck ,I remember before I started treatment the liver people kept telling me they have a very high success rate with very few side effects like 90% success no I'll effects ,I've heard of quite a few older people becoming sick, hope you are feeling ok and staying safe.

REPLY

Was this helpful? 0

Re: Lou (# 85)

Hi. No cyclone is on the east coast. I live in the West coast. 95 miles east of San Francisco.
I live in suburb of Sacramento the state capitol called Carmichael.
Less than eighty thousand people.
Last year when I was in the throes of hell on Epclusa I met two people at dr. Office who were going through same treatment.
We talked about how awful we felt since starting it.
They also never saw a dr. Only p.a. like I had.
But no one at this time has reached out on this forum.
My life is crap.
I have nothing to look forward to.
Every day the same.
I try to pull myself up but difficult..
Hope this finds you with your spirits up.

REPLY

Was this helpful? 0

Re: Kathleen (# 86)

Thanks Kathleen for reply,I just wish there was someway of letting people know,that this med is no miracle and to get some real facts about it.sometimes I go onto another forum they seem so pro Epclusa keep.talking about it being so great,every time I try to say my story,the subject kinda changes,it's probley controlled by gilliard ,lol,let me know if you get any ideas. Might try find a forum where i can tell my story,we have a lot of sugarcane around where I live they burn it 5mths of year, I have always had lung infection s fairly often now IV been diagnosed with emphasemia, that on top of the Epclusa side effects ,is so exhausting,take care.

REPLY

Was this helpful? 0

Re: Kathleen (# 86)

Hi how are you Kathleen, hope going ok? Really starting to warm up over here, we have had fires, very smokey. Went to see my Dr on Tuesday. He has had me on an inhaler for COPD (emphysema) which got worse after treatment. He said he forgot to tell me I also have asthma, age over 50s can get it, but I think treatment brought it on (but they won't admit). So anyway he's been giving me the wrong inhaler and now I've got a steroid inhaler twice a day, but I still feel short of breath. Also real bad taste in mouth and more nausea. I'm not looking forward to summer at all, it's 3am saturday here. Gotta close windows to stop smoke etc, I can't sleep. Anyways I really hope you're feeling ok.

REPLY

Was this helpful? 0

Re: Lou (# 88)

Hello. Did they tell you to rinse your mouth out after using an inhaler? Very important. I also had to go to the emergency room for a cough. Put me on two inhalers. I feel that since Epclusa my health has declined. Sorry about all the fires there. Same thing here in California. Fires are everywhere. Did you smoke? I never did but did smoke other tobacco lol. Hope this fall has you and I feeling better. Thinking of you.

REPLY

Was this helpful? 0

Re: Kathleen (# 89)

Hi Kathleen. I agree since taking Epclusa my health has gone downhill. Even my toenails have gone strange. What annoys me is when I mention to my GP (3rd GP in 4months) about any symptoms I have, like sudden asthma, numbness, breathless, ect, he always says same as the liver clinic, never heard of Epclusa causing that side effect. He seems to get all his info from the liver clinic (epclusa) people. I don't like this steroid inhaler he put me on, twice a day plus ventolin when needed. Once again I seem to share things you experienced smoking ect, I'm just glad we had our youth in the 60s 70s, and not these days, when the world seems to have lost its innocence, and I liked the music then. lol. Take care, stay away from the fire smoke, the thought of summer scares me, hot days nights, smoke everywhere. Oh well could be worse, I like that saying "youth is wasted on the young these days"

REPLY

Was this helpful? 0

Re: Kathleen (# 89)

Hi Kathleen, hope this message finds you happy and going ok. I don't like troubling you, but I would be interested to know if the puffers they prescribed for you were steroid based? I'm on this one called pulmicort turbuhaler twice a day for asthma. I read where it can cause infections and lowers immune system. I just don't think this could be good after taking Epclusa DAAs. I really don't want another infection. My silly Dr has forgotten to give me asthma meds. I never even knew or was told that I had asthma as well. Maybe the treatment brought it on. I just don't know plus I don't think my Dr cares or knows much about treatment or asthma. He said some people get it over 65yrs old. I also read where your not supposed to just stop taking the steroid med, but it doesn't seem to make much difference with my breathing. I've been on it for 3 weeks. My Dr is gone on holiday again or I would ask him if I would get bad feelings if I just stopped taking it. He told me I need something for my asthma because I was using my ventolin too much. He didn't seem to understand that if it's smokey you need to use the puffer more often. Anyway Kathleen, sorry to take your time. No one around here understands.

REPLY

Was this helpful? 0

Re: Lou (# 91)

Hello.

You are NOT wasting my time. Yes my inhalers are steroid based.

I never smoked but since Epclusa my lungs have been easily irritated. Last bout took almost six weeks to get better. I went to hospital and they ordered steroid pills and the inhaler. Not sure if they were effective or time just ran its course.

Did you get your flu shot?

I am soooo paranoid about going to public places. About touching items at stores. I know it sounds weird but since my hep c/ cirrohis i have changed how I shop. People go out sick and don't care if they get others sick. Also I know that it's not good to be on any steroids for a long period of time.

Seasons changing here. Got down to 48 degrees yesterday morning. No complaints. Love the cold.

Take care and keep me posted.

REPLY

Was this helpful? 0

Re: Bonnie (# 20)

Hi Bonnie,I'm in Australia,I can totally relate to how you feel,I'm 65 and have survived fine till now,I did epclusa treatment 11mths ago ,i had bad side effects during treatment ,they have never gone away ,now some days legs ache so much can't walk totally exhausted numb fingers toes ECT, virus gone so far they say,I don't think I will ever feel well again ,the liver people who basically pushed me into doing treatment oh they were so nice,lol ,have been totally no help at all, no support at all,my dr knows nothing about treatment or the virus and gets all his info from the liver clinic in our small town,they tell him there's no way Epclusa could do these things to me.i just feel like a guinea pig,IV just been prescribed a steroid inhaler for asthma twice a day,it doesn't seem to agree with me Edema legs abdoman nausea ,I read that you shouldn't take it budesonide pulmicort turbohaler if had liver problems,I don't know what to do,dr said I was using my Ventolin too much,but I had no choice due to fires in my area,I have no faith in western medicine good luck to you, please any ideas appreciated.

REPLY

Was this helpful? 0

Re: Kathleen (# 10)

Hi Kathleen, hope you are doing ok and not getting too many nasty effects from treatment. Summer is just starting over here and I can't cope when it's too hot. I'm not sure if I told you since doing treatment I've had asthma. I'm on Ventolin puffer when having trouble breathing; also a preventer inhaler called ultibro once a day. It's supposed to make you breathe easier but I really don't know if it's doing anything. I just take it. When the fires were happening here the smoke in the air made me use my Ventolin more than usual to assist breathing, (panic attacks make it worse). Anyway, he said I'm using Ventolin too much and prescribed me a steroid puffer called pulmicort turbohaler with budesonide in it. Sorry for raving on but your one person who seems to understand. Anyway, I did some reading and saw a warning about liver problems and budesonide should not be taken, something about the immune system doing it hard then the steroid budesonide weakens the immune system and causes infections, ect. I just feel like stopping it, but it says on the packet don't stop this med cold turkey. I've only been taking it for 6 weeks, I don't need any infections, and my breathing hasn't really improved since starting it. My dr's gone away again and there's no one who understands. I'm a guinea pig. Take care of yourself. Write back anytime if you feel like talking.

REPLY

Was this helpful? 0

Re: Kathleen (# 92)

Hi Kathleen hope you are going ok,starting to warm up over here I guess it's the opposite where you are!well latest with me is my dr thinks my shortness of breath isn't responding to the inhalers I'm on,so IV now got to see heart specialist and do a stress test think that's what he called it,oh well the game keeps going on,I really don't like getting out of breath so easy,they will probably suggest stents ect tried telling my dr I didn't really have these problems pre epclusa ,I could tell he didn't really believe that treatment could cause this.i kind of hope they can treat me with meds rather then operating ,what's been happening in your life ,?hope you are going ok,I don't think I will ever get used to the heat here,the liver people assured me after treatment I will feel so much better lol,really glad I'm older and experienced life a bit and not a young kid getting these symptoms ,it's so hard to find someone from liver clinic interested in Poste symptoms ,
Take care of yourself.

REPLY

Was this helpful? 0

Re: Lou (# 95)

Hi. Yes glad heat is gone BUT all over California fire had erupted. Millions of people without power. Thousands of lost their home. Businesses are gone. And the sky is thick with smoke I live in a little town called Carmichael California which is a suburb of Sacramento. All around us is fire on the interstate by the airport near San Francisco downtown Los Angeles and up in the hills going east towards Lake Tahoe on fire. I just don't understand how this keeps happening and why are Forest department does not do more offseason to prevent these horrendous fires. Yes I too am still struggling with after epclusa. My life has changed. Before I knew I had hep C and cirrhosis my life was better than it is now. I was working although it was difficult because I didn't know why I was so tired all the time. At least I could function. It takes me so long to get ready to do anything and like I have to think about it two or three days ahead of time to get up enough energy to want to leave the house. I was very active I worked until three years ago and now my life just sucks. I'm sorry you're having so much trouble with your breathing and I hope they find a cure not a cure but some way to help it get better and stabilize. I just don't understand why your doctor and my doctor and other people's doctors are so hard wire to not believe that epclusa is the Devil in Disguise. I hope you get some relief from the Heat and I hope to hear from you soon Epclusa sucks.

REPLY

Was this helpful? 0

Re: Kathleen (# 18)

Take c 60
It really works I did harvoni for five days and stopped because of what your describing. It was terrible.

REPLY

Was this helpful? 0

Re: Kathleen (# 96)

Hi Kathleen,hope you are ok,we have really bad fires not far away,plus slot of dust getting blown in also, definitely not good for my breathing,it's so hot not even summertime yet,have to keep doors windows closed so don't get any fresh air ,I really don't know how I'm going to survive summer,since doing Epclusa I feel so exhausted have trouble walking very far without nearly collapsing,I had to go see my dr yesterday to see if he could help me with my numbness aches in joints anxiety ECT ,was a waist of time all he could say was you must be feeling good getting rid of virus,I said no way I wish never done it never felt so bad!all he could say was treatment wouldn't cause any problems,I felt like screaming WAKEUP,he didn't even notice that I have put on heaps of weight around my stomach so much that I feel unbalanced always scared having a shower that I will fall over ,also been getting body jerks or leg jerks often every day all he could say was probably nerve damage ! Now he has made appointment for me to see heart specialist on Monday to do a stress test,have you heard of these ?I'm not looking forward to going on a treadmill till I nearly collapse to see if heart is going ok,I'm really stressed about stress test ,,it's midnight here Friday temperature is still in 90s fans going flat out ,Carmichael sounds like ok place ,it quite large compared to where I live, population 2,800 ,,,take care Kathleen

REPLY

Was this helpful? 0

Re: Lou (# 98)

It's great to hear from you. We also have wildfires everywhere here too. I was thinking that I also gained weight just in my stomach since Epclusa. My ears ring all of the time. My liver specialist is so unplugged from my symptoms that I am changing my health care plan. No one wants to talk about how dangerous Epclusa really is. Im sure they get kick backs from pharma. I am exhausted just going out to shop. I feel weak and useless now. Not myself any longer. Please take care.

REPLY

Was this helpful? 0

Re: Skpp930 (# 8)

Hi Skpp30, you are not alone. I'm 12 mths past tx Epclusa. I have numb toes/fingers, nausea near everyday, pain in my knees make it hard to walk. I have sudden asthma. Never had it before tx. My dr has me on corticosteroids which have bloated me so much it feels like my stomach is pressing on my lungs which means shortness of breath. Oh I wish I never did their tx. It cured the virus but wrecked my immune system. Scared to see what happens next! You're right. All the so called experts say tx wouldn't cause this, the hep C must have. I'm 66 and felt ok pre-treatment. Now I'm a wreck. Take care. Write me back if you need support against Gilliard.

REPLY

Was this helpful? 0

I was on Prozac (fluoxetine) for about 8-9 years starting when I was about 14 years old. I'm 23 now and for about th...

25 REPLIES

I had mild psoriasis on my scalp, elbows, and a few on my legs. Within three days of being given an intramuscular inject...

3 REPLIES

I have been on prozac for the last two and a half years and it has ruined my life. Since taking prozac I have lost my jo...

4 REPLIES

I am 19 years old and I have been on Vyvanse for 3 years now. I started out with 50mg and it was amazing. I could stay f...

3 REPLIES

I took Topiramate for seven days. On the eighth day I had pressure that went up to 60 and 70 in my eyes and ended up in ...

6 REPLIES

Hi there, I have a strange question that i cant find the answer for. I took Tramadol/Zydol for around 7 months for back ...

2 REPLIES

Hello. I am 16 months post epclusa and feel worse than when I started. I was a server for over 40 years. Full of energy....

156 REPLIES

Has anyone taken Epclusa and experienced back and leg pain? I already have 2 herniated discs but it seems that since I s...

33 REPLIES

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

31 REPLIES

Beginning January I completed 3 months of Epclusa, n now am every day dealing with foot,ankle and lower leg swelling. Wh...

17 REPLIES