Oh boy I am sorry you are suffering all these problems.
Most of them are similar to mine although I only did 12 weeks of tx before being taken off (non responder). I have been off tx for almost six months now.
I have the myalgia/arthralgia and fatigue too, tingling feet and arms and I find myself hobbling instead of walking sometimes.
I'm happy to say my vision has come back
My job is physical too and I am only back to half the hours I used to do before.
My mood swings have leveled out.
It takes a good 6 months for Riba to get out of our systems so sides can hang around for at least that long for some, I'm mentally prepared for longer.
Something I am not sure of is if all of my complaints can be blamed on tx or are some of them signs and symptoms of chronic long term HCV.
I hope you do start to slowly improve!

So true when you said you weren't properly warned, The VA was worse, they made it sound like you go through these side effects but they go away.These drugs for treatments are cancer causing also when I read they doctor thinks the risk of getting cancer outweighs the risks with this virus, boloney! They are so misinformed as is alot of these doctors or they just dont give a crap. So frustrating and I hope you get to feeling better friend, thanks for your post and for giving alot of us something to think about, take care and good luck..

slo, i was in a state of repair for 3 yrs after infergen. increased tinnitus and mild vision loss remain. of course im 4 years older??
i wouldnt say anything to defray from your warning tho, very thoughtful and legitimate warning.
@ joe, i suspect the va is the feds last pool of test monkeys since underdeveloped countries have gotten hip to their sick shit..when i went to va trashed on infergen there was another man in er talking suicide. doc admitted that he was a big pharm monkey also. my docs primary concern was for her study ( $ ) , not my well being at all.

I go to my Dr tomorrow. I'm sure we will talk about new treatment but I'm thinking if it's just adding another drug, if I want to wait until Riba and inferonaren't in the mix. Guess I'll wait and see.

To treat or not to treat, that is the question! For me that means trying to determine whether or not I'm going to enjoy a higher quality of life for my remaining years starting, say, a year after treatment. The mitigating factors concerning treatment include: will tx be successful? will I recover from tx? will the hcv return down the road? The mitigating factors concerning no tx include: continued steady decline in health, loss of liver function, potential for transplant with soc tx part of the deal anyway, or, untimely demise. Five years ago I just said "no thank you" to tx. Today, I'm convinced that tx is the most expeditious and financially prudent course of action, but the potential for severe side effects, some lasting, is probable. The bottom line, for me, is knowing that I'll never realize the answer to these questions until I take the medicine. I'm so grateful to all of you for just being here and sharing your personal experiences, so greenhorns like me have some sense of how to best prepare.

Sorry for what you are going through, slo. I am dealing with all of the lingering sides you listed.

Going through the hell of tx, made me realize how precious life is. It made me find the strength that I had forgotten.

Yes, I have new aches and pains, and I feel older, but the HCV is dormant at this time. I'm grateful for that.

I would hope EVERYONE researches the tx before beginning. I thought long and hard, and knew the risks of post sides. Some of the sides were a surprise to me, like the mental ones!

Tx is not for everyone. Would I do it again? Probably not.

I chose to treat, and do not regret in the least. It was a beginning of a new journey in my life, and it was what I CHOSE TO DO.

Hugs mcslo. I agree with what you are doing. Encouraging everyone to research, and sharing our experience.

I hear you and having the same problems and i am beyond upset. I was lied to by dr.s and when i was having problems after tx they told me its impossible. Flood the congress ppl with letters and report it to the fda which i have done. Maybe if we get enough ppl they will listen and help us but doubt right now cause of money problems and ppl coming out of the war. The future dont look good for the sick right now.

My nephew recently began interferon treatments and had muscle aches at first. He says they are not so bad lately. I had no idea those treatments were sometimes so debilitating.

EVERYTHING about this disease is/has always been HUSH HUSH. It makes me sick to my stomach. I had myself in such a panic prior to tx, but learned from this site all the possible sides, most of which all the docs I have seen just scratch their heads and say hmmmm...
THEY KNOW............................. It's a money making business for the pharms, docs and we are the gunea pigs.
I keep saying we all need to come together and write a "HCV TX for Dummies" Book so people can HONESTLY know the risks and what COULD happen, specially long term.
If docs told us all this in one sit down, I would have ran like hell!!!!!! I was told I would get flu like symptoms ONLY. Bullshit!

I'm sorry for all those w/lasting sides, My heart goes out to you, I'm scared as hell as my journey is a rough one compare to most.......... I'm like a 2 yr old child most days in all aspects....... I was a hairdresser and wonder if I will be able to go back to that extremely physically demanding position as I work w/wheel chair bound people, home bound, people in hospital beds, etc.
I already want my life back! My fav past time when not on the computer or watching boob tube but not even grasping it, is coloring w/my grand daughter. I have stepped it up from crayons to coloring pencils (whooo hooo!) but cmon! I can't even play Dora memory match game w/her! Ack, I haven't slept in 2 days, but then when I do sleep sometime, I never want to wake up! What memory? Moody as hell. Body feels like i do 3 rounds in boxing ring every day, and I am only 1/2 thru tx. Summer 2009 i was doing all day water parks/amusement parks w/my grand kids.
The saddest part is............... There is no one to honestly talk to in the medical field so it just contributes to our frustration. If I said it once, I've said it 100 time to everyone, This is my 1st and last shot at this...NO PLAN B. People like Capn and other who did the grueling infergon and 3 times to book, have my greatest utmost respect.
I think our goal should be to some how make this a disability so we can get help .................. The government is fighting me and I only want temporary help for year,,, and it's MY Fin MONEY!
TY for sharing and being so honest................ WE have to do something about this......... This is inhumane..........

i would like to comment on this post tx treatment post. i would not eat foreign food unless i knew what was in it. the patient has to take responsibility for his own decisions based upon risk vs. value. if patients read the labels on these drugs, it clearly states all possible sides and long term effects of tx. there is no lack of warnings, they are all clearly stated on the labels. there are no surprises if you make informed decisions and know the risks. maybe you will have issues, maybe you wont, but anyone over the age of 40 is going to have a lot of these problems anyway or they were lurking behind the hep c and are masked by the tx. the hep c goes, then youre left with what was there before it. of course life changes hopefully for the better, but for me, i would take on anything as long as i was free of hepatitis c. that is the goal here. there is no magic tx that is risk free for anything. those beginning tx or in tx operate on faith that the tx will work and will be okay and virus free and nothing else really matters at that time. deal with other things later, but there is nothing, nothing! that comes close to the sx of hepatitis c and the liver damage it causes; we are not talking about sleep, or muscle pains or memory, hepatitis c kills. choose your poison and educate yourself by reading labels and not waiting for doctors' verbal warnings, they dont have the time and you will forget whatever they say anyway. read, read and read some more--from the drug companies themselves.
robin

U r right Robin, I just need to rant sometime cuz it is NOT openly discussed, especially w/famous people who have the forum to do so......... I don't read too much into the side or many negative things, as I believe what u put out there, u get back.
Besides, my eyes are too bad to read that tiny little print!! lol
I knew all the sides by doing months of research, everyone talks about sides of chemo w/cancer, I guess what sets me off is it's all hush hush and not out there to the public )specially sided of riba( ....which hindered my chance of collecting 1 flipping yr of temp ssdi. Worked since I'm 14 w/only 3 yrs off in all that time, I'm now 53....... SO I guess my main rant is.. It shouldn't be so hard to get supplemental income so we don't have to go this being almost homeless from our country since, YES< the side are listed. IT's battle enuf getting thru tx, let alone living off food bank food , no fresh fruit, dairy, veggies. That's the crime, when I paid into our country for over 30 yrs.... I just want temp help to get better so I can give govn't MORE money!!!!!!!!! ;)

Robin your idea of educating yourself is what I was suggesting but your statement "there is nothing, nothing! that comes close to the sx of hepatitis c and the liver damage it causes" Is not always true. I had high viral load 15,000,000 .I had the virus 30 + years and my liver was at 2/1 . I would never had known I had the virus from how i felt.
AS you read , read ,read you will find that the statisics show that MOST people die with Hep C not from Hep C. I know for some this is neccessary evil but for some it is a choice.
I see you haven't finished treatment, I hope you don't feel the way I do today when your 8 months post or you might be changing your view.
Be well!

I am very sorry you still have all these sides. I am 1 1/2 yrs post TX, I assumed I would return to normal quickly, but it did take a while. After all, I was sick and tore down for 48 weeks and it took me longer than that to build back up. My arthritis is worse, but I did finally get stronger and recover. Would I do it again? You bet I would. I am virus free.

i completed tx two weeks ago. and for me? there IS nothing that comes close to the long term effects of hepatitis c. my 50 year old sister had it for 30 years by the time they figured it out, it had turned into cirrhosis and within 6 months she was dead. she had no symptoms until it was too late; since there are 350,000 people who die from hepatitis c each year, i think it is an antiquated belief that more people with die with it and not from it---since it is in your blood and circulates through your entire body and organs, does anyone really know what it causes to break down? and Carolann, you are absolutely correct--the inability for proper health care during the disease and the tx is horrible. diff issue, but i get it. so thats what we need to work on--not non-disclosure; everything is disclosed, it is right there either online from the pharmaceutical company itself or on the package insert. this tx is all we have at this point and we have to believe in it. robin

I'm sorry you've had such a difficult time with it. I've got quite a few of those sides too but not all at once - they come and go. My temp when I started was 95.2. Today is finally was 98.3. I'm on week 7 of a clinical trial and my liver enzymes are back to those of an 18 year old (I'm 51). Don't know what my VL is down to yet until week 12.

How was your health before tx? Were you on other meds? I sometimes wonder if there's a chemical interaction with other meds people take that makes the sides worse for some.

Do you drink pop? Eat a lot of junk food and fried food - I start aching after I eat junk and fried food. Drink a lot of coffee? Eat a lot of sugar? | understand the virus thrives in an acidic environment and that's what you create when you're eating these kinds of food.

I know that this tx is doing a number on my mind and it varies day to day but I also know that my physical side effects are mild compared to a lot of people. It may be because I only have mild liver disease (stage 2 fibrosis). I am still working and I hope to continue to do so through my treatment. I do not feel that sick physically - maybe I'm just one of the lucky ones or maybe there are a lot more out there who will speak up now.