Author Topic: Feeling like shit more the a year later (Read 22354 times)

Mike Conwell · « **on:** April 28, 2016, 04:19:19 am »

I'm over a year post and still feel horrible. Fatigued to the point of no energy at all. It's 3 am and I up. Not good. I never feel good and wish I hadn't taken the harvoni. I believe we have all been lab rats and now we will pay for it

Lynn K · « **Reply #1 on:** April 28, 2016, 11:20:31 am »

Mike sorry to hear you don't feel well.

Do you have an liver damage or any other health conditions?

Have you discussed you continuing health problems with your doctor and reported this to the FDA?

Hope you feel better soon

KimInTheForest · « **Reply #2 on:** April 28, 2016, 12:45:36 pm »

Quote from: Mike Conwell on April 28, 2016, 04:19:19 am

I'm over a year post and still feel horrible. Fatigued to the point of no energy at all. It's 3 am and I up. Not good. I never feel good and wish I hadn't taken the harvoni. I believe we have all been lab rats and now we will pay for it

You are not alone in having post-treatment health problems, Mike. A number of us here have been wrestling with that. It is important to be working with a doctor during this period if you are having ongoing problems and feeling like crap. Be sure you get a full work-up in terms of blood tests - Complete Blood Count, and I would say iron test, liver enzymes, kidney function and anything else your doctor thinks is appropriate. Then be sure you have your own copy of the lab results. Don't leave it to doctors to interpret the numbers for you.

That kind of documentation is your starting point to sorting it out.

Here is a thread where feeling lousy post-tx has been discussed extensively (nearly 500 comments so far!): http://forums.hepmag.com/index.php?topic=2053.0

And here's a thread about possible problems with Epstein-Barr virus following treatment: http://forums.hepmag.com/index.php?topic=4115.0

Good luck!
kim

Mugwump · « **Reply #3 on:** April 28, 2016, 06:31:32 pm »

It is looking more and more like the human immune system is effected by HCV in ways that are not at all well understood. There is no logic in thinking that the treatment itself causes all the problems. However the treatments strain the renal system and put a stress on the cardio vascular system during treatment.

Indeed the strain of a rapid release of dead liver cells and the changes in renal functions during and after treatment may very well cause cardio vascular issues especially for those of us who are getting on in years.

With the numbers of people who are reporting weird immune like issues post treatment it is starting to look like HCV radically changes the immune system over time.

Some of us seem to become tuned to having HCV and by removing the HCV RNA that is know to create some structures that imitate normal protein chains our immune systems seem to go out of whack and attack us in ways that are similar to a host of other autoimmune diseases.

This and other reasons are why having insurance constraints that wait until someone has advanced liver damage by HCV is asinine money grubbing stupidity.

It is becoming obvious that the longer you have HCV the more difficult it is for your body to adjust to radical step of removing it.

drummerman · « **Reply #4 on:** April 28, 2016, 10:41:18 pm »

Quote from: Mike Conwell on April 28, 2016, 04:19:19 am

I'm over a year post and still feel horrible. Fatigued to the point of no energy at all. It's 3 am and I up. Not good. I never feel good and wish I hadn't taken the harvoni. I believe we have all been lab rats and now we will pay for it

I hear you , many days I feel worse than before tx and worse than during tx. It will get better. Check my post on vitamin D.

dm

Mike Conwell · « **Reply #5 on:** April 29, 2016, 05:34:18 am »

Here it is again 3rd day this week and I've been up since 2am. IDK what's going on but I seem to keep getting more problems than I had before Tx. It's like no one has any answers. Having a hard time doing my job but lucky enough to have a friend ( more like brother) that takes care of me on the work end. Tired of being tired

drummerman · « **Reply #6 on:** April 29, 2016, 08:01:44 am »

Quote from: Mike Conwell on April 29, 2016, 05:34:18 am

Here it is again 3rd day this week and I've been up since 2am. IDK what's going on but I seem to keep getting more problems than I had before Tx. It's like no one has any answers. Having a hard time doing my job but lucky enough to have a friend ( more like brother) that takes care of me on the work end. Tired of being tired

Mike ,
I went through the insomnia today... about 4 weeks after EOT. It really made me panic. Tried ambien.. hated it. Benedryl helps.
fortunately the insomnia only lasted about a week. Hopefully yours will subside soon!
You might also want to get your Vit D level checked.
dm

FutureThinker · « **Reply #7 on:** April 29, 2016, 03:30:29 pm »

Very sorry to hear you are having these issues post treatment. Perhaps getting a second opinion would shed some light on what's going on? FT

Pete · « **Reply #8 on:** April 29, 2016, 10:10:45 pm »

Hello Mike - Sorry to hear you are feeling so poorly. Perhaps I missed it, but did you clear the virus following treatment? Was ribavirin part of you treatment?

Lynn K · « **Reply #9 on:** April 29, 2016, 10:26:57 pm »

Mike do you have cirrhosis? Day-night reversal can be a symptom of hepatic encephalopathy

http://www.hepatitiscentral.com/cirrhosis/sleep-and-cirrhosis/

Sleep disturbance is a classic sign of hepatic encephalopathy. However, there are limited data regarding its prevalence in cirrhotic patients without overt hepatic encephalopathy.

INTRODUCTION

A disturbance of sleep is recognized as one of the early signs of hepatic encephalopathy.1 However, there are limited data regarding its prevalence in patients with cirrhosis without signs of overt hepatic encephalopathy.

I surely hope this is not your situation but it is something to consider

Mike Conwell · « **Reply #10 on:** April 30, 2016, 10:08:55 am »

Yes I'm 1 year post. Just done blood work and everything is normal. Thank God for that. My concern is what is this medicine doing to all of us post tx

Lynn K · « **Reply #11 on:** April 30, 2016, 12:22:21 pm »

I am one year post also Mike.

All my blood work is normal except my platelet count which is slightly improved from before treatment but still somewhat low due to my having liver cirrhosis for 8 years but thankfully I remain compensated my only symptom of cirrhosis is some edema.

Have you had a fibroscan or fibrosure test done? What is your fibrosis score?

I was treated 3 times with interferon based tx but I did not respond at all then I treated spring 2014 for 12 weeks Sovaldi/olysio but relapsed post treatment. I started harvoni 24 weeks November 2014 and add ribavirin for 15 of those weeks finishing treatment May 4th 2015.

Really I have neve had any long lasting effects from any of that. I did become very anemic last year on the ribavirin but my forest blood test at 10 days post my rec blood cell count was nearly back to normal.

Anyway my point in all this is have you considered that it could be something other than taking harvoni? What does your doctor say and have they offered any ideas, suggestions or help to feel better?

Have you reported your symptoms or Gilead? They really do want to hear from us.

I copied this from the patient information that comes with your prescription.

https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

Best of luck to you

mario555 · « **Reply #12 on:** April 30, 2016, 11:52:17 pm »

Hello everyone, Hi Lynn K! I was on 24 weeks of treatment and finished treatment exactly 1 year ago. I still have a low case of tinnitus (1-2/10) and heavy dizziness when I am doing rapid specific head movements. This medicine (Harvoni) is heavy!
On the other hand, I was F4 bordering on cirrhosis and I had lost the will to fight the disease! I was slowly dying! I am now a vibrant 60 years old, full of energy, working halftime and enjoying a new lease on life! Thank you Gilead for bringing a novel approach to a disease that is killing millions!
Finally, I often don't sleep well, I have headaches, my joints swell up sometimes! Ho! I forgot! I aged a lot while I was hep c positive! I guess old age problems will start showing up! Even older people who never took Harvoni have old age problems!

Dan513 · « **Reply #13 on:** June 17, 2016, 09:12:26 pm »

Mike you are not alone, feeling like shit is a way of life now. I finished 180 days of sovaldi and riba oct 2015. When I started I had every side effect listed went from 160 lbs starting to 130 when I stopped and 125 at my 6th month appointment I never really felt better. The Dr ordered a couple of test, but I started with knuckles locking up overnight and severe pain when i would use my other hand to open them.I had more blood work done and I knew what the answer was before the call. So now I have Rheumatoid Arthritis which is progressive no cure and the treatments suck. Right now I am so tired of feeling like shit and now I am on my 2nd day of treatment for RA and getting dizzy nausea tired and very pissed off. But my Hep C is gone for now. Good luck Mike hope you pull out of it.

beto · « **Reply #14 on:** June 20, 2016, 09:18:05 pm »

Hey all,

I think we all stop looking at liver type numbers for all our problems (the folks that have experienced problems). I suggest that we all start taking the multitude of other issue into consideration as well, especially inflammatory markers. We don't have to blame the treatment yet...nor even hep-c...but, something is going on. Auto immune tests (crp, ana etc) just might be the best place to start looking. Just sayin'....

slats1056 · « **Reply #15 on:** June 20, 2016, 11:32:30 pm »

I am with Betos' thought process on this matter. I have said it before and I will say it again.... I don't blame Harvoni , or even Hep C!!! BUT... Something has been triggered that is manifesting itself in these symptoms! I have had more tests in the last six months than I care to think about. Other than extreme Hypertension that started in January, the only thing that has come up is low Vit B levels and Vit D deficiency! The Drs. all say -- Maybe You are just getting old! Now that is a great observation after all the tests they have ordered. Looking for another Dr, that can think outside the box for some help with this crap.
Eight months post Tx. and feeling pretty good , but the lower back pain , hips and joint pains , and lower G.I. issues that showed up during Tx. are still with Me. Still have a big time energy crash around 2-4 o'clock in the afternoon that is as bad or worse than before Tx. on the fatigue scale. Oh well , onward through the frogs we go people. Don't give up and don't settle for bull shit!

I HAVE P.M.A! Positive Mental Attitude! I AM POSITIVE I AM MENTAL AND I KNOW I HAVE AN ATTITUDE!

Mugwump · « **Reply #16 on:** June 21, 2016, 05:00:39 am »

It is looking more and more like autoimmune issues are at the root of many of our post treatment issues.

Beto; let us not forget that HCV over time definitely messes with the immune system more than other many other similar diseases so it is only logical that many of us might take quite a while to adjust.

I still think that removing HCV might enable the immune systems to suddenly create huge numbers of HCV antibodies. And it might just be something as simple as a sudden bump in this gluey goo quasi protein in our blood that is playing hell with us. Unfortunately there seems to be no test, as of yet, to ascertain the actual levels of sticky HCV antibodies in the blood. If there was then this possible cause of immune reaction inflammation could be ruled out of the equation.

The scary part is that many different types of antibodies for other virus types and other disease pathogens are known to cause all sorts of issues including heart trouble. So there is much research yet to be done about exactly how HCV antibodies effect the body long term.

What I can say, for me at least, is my immune reactions to common problems like colds and flu have not been stellar post treatment. But at least I am still fighting off the bugs effectively. Age is a consideration but the recovery from being very close to advanced cirrhosis is a very hard fight.

I have stopped having severe hemorrhoid issues with the small arteries that was starting to plague me 4 years ago. So I am fairly certain that my arterial system is actually improving as my cirrhosis eases off.

My GP has said that regular endoscopy is not called for in my case because if there is no history of esophageal varices. I have also noticed that I have less bleeding from my gums.

So it is not all doom and gloom

Cheers
Eric

FutureThinker · « **Reply #17 on:** June 21, 2016, 01:26:56 pm »

To all, while I am saddened to read about all these post-treatment issues that are interfering with quality of life, I just ask that each of you contact the FDA &/or Gilead where Lynn provided info on this thread, to make sure they are fully aware of these issues. The more they hear from us "pioneers", the more likely they will do something. Gilead's newest drug is due for an FDA decision in just a week.

We most likely need to take the lead on this to get this info to the decision makers and researchers. Again, I sincerely hope life improves soon. FT

drummerman · « **Reply #18 on:** June 21, 2016, 03:46:51 pm »

I thought long and hard before I decided to retreat. The reason I did was because I did not want to feel bad in my senior years with a liver under attack. I did not have much liver damage but knew it could come at anytime. So I bit the bullet and retreated with Viekira. I now feel worse than I did during treatment and way worse than before tx started. Now I guess I could attribute this to old age (61.5 years old) but it just came on so suddenly. It was like I aged 5 years in the span of 1 year.
I am currently at about 35 weeks post eot, so am hoping things will get better. I know it took a full year to feel better after riba/interferon so my hope is that will occur then. I literally woke up one day and felt like my old self. Fingers crossed that that happens again.
"Never give up, never surrender. Activate the Omega 13".
https://www.youtube.com/watch?v=9fdcIwHKd_s

dm

Philadelphia · « **Reply #19 on:** June 22, 2016, 07:02:00 am »

I don't feel like crap, but I have noticed (by looking at test results) that I'm not bouncing back like my specialist would like. Liver condition appears to be the same as it was when I went into treatment. Varices a little worse.

The good news is my blood test results. They are uniformly all within normal range except for those bloody platelets, my bili over by 1 point and my INR is still too high. My AFP is bee-you-ti-ful - sitting firmly within the normal range (0-7) at 6.1.

So although I feel pretty good, and continue to surprise my specialist by working full time as a principal of a very busy school, my liver isn't as good as people think.

But it's keeping me alive and for that I am eternally grateful.

GLCII · « **Reply #20 on:** June 26, 2016, 07:35:12 pm »

Hi Mike & Everyone else

June 3rd 2016 was my post year anniversary of taking Harvoni. I too have my days when I feel worn out and don't feel like doing much. I've wondered at times what the Harvoni might have done to me in a negative way. Though I don't feel as down as I did when I had the virus, I still have my moments. I try and factor in the fact that I work midnights, in an auto factory and am in my mid 50's, I still come back to either the virus or the harvoni did something.

I also try to take in to account that it took the liver some time to get damaged, due to the virus and it might take time for it to heal and get back to normal. Maybe what we're experiencing is the liver healing itself and causing the tiredness or fatigue. I'm not sure. I do like to think that this will all pass someday and we'll all be back to our normal selves again. I figure time will tell in one way or the other.

I"m just hoping I don't see one of those late night lawyer commercials about taking Harvoni. You know the ones where they say "If you taken this drug, call this number. You could be awarded a cash settlement"

WholeFoods · « **Reply #21 on:** July 08, 2016, 10:50:06 pm »

Quote from: GLCII on June 26, 2016, 07:35:12 pm

I"m just hoping I don't see one of those late night lawyer commercials about taking Harvoni. You know the ones where they say "If you taken this drug, call this number. You could be awarded a cash settlement"

I hear that, I often think about that too. I'm 15 months post TX and have the same issue as well as still get bad muscle cramps in my back and intestinal flare ups. Been thru the list of things it "must be" caused by, but never the same set of circumstances and symptoms started with TX, so... All my blood work looks good. I feel bad that I let people down so frequently because I'm not able to do more. Wish I could learn to get over that. Sure hope it gets better.

KimInTheForest · « **Reply #22 on:** July 08, 2016, 11:00:05 pm »

Quote from: WholeFoods on July 08, 2016, 10:50:06 pm

I hear that, I often think about that too. I'm 15 months post TX and have the same issue as well as still get bad muscle cramps in my back and intestinal flare ups. Been thru the list of things it "must be" caused by, but never the same set of circumstances and symptoms started with TX, so... All my blood work looks good. I feel bad that I let people down so frequently because I'm not able to do more. Wish I could learn to get over that. Sure hope it gets better.

For those of us with prolonged post-treatment problems that we did not have upon starting treatment, I think it can take a very long while and lots of tests and research and hypotheses before we can start to unravel what is going on in our bodies, and how (if at all) it relates to the treatment we went through, which seems to be the trigger for what followed. I feel I am finally starting to unravel what may have shifted in my body as a result of treatment, and what may now be going on. But I am now 1 year post-treatment. I still don't know anything for certain (but more tests later this month). I have been seeing 3 different specialists along with my family doctor. I have now done copious amounts of reading and research on medical conditions and lab results I never before knew existed - e.g., things like sarcoidosis, auto-immune hemolytic anemia, mitochondrial toxicity, M spike, free light chains...

I am happy to report that I am finally feeling much better - almost normal, although still anemic and some other issue that show up on blood work. So I feel my body is bringing this thing (whatever it is) under control and is headed in the right direction. More than anything, I feel the 12 weeks of treatment was quite a powerful foreign force/agent/army that unbalanced my body in many ways. And that it takes a lot of patience and healthy living, eating, exercise, attitude, and TIME for the body to relocate its original balance point.

best to all who are struggling with post-treatment unwellness.

kim

Scoutdoy · « **Reply #23 on:** July 09, 2016, 08:59:49 am »

Quote from: Mugwump on June 21, 2016, 05:00:39 am

It is looking more and more like autoimmune issues are at the root of many of our post treatment issues.

Beto; let us not forget that HCV over time definitely messes with the immune system more than other many other similar diseases so it is only logical that many of us might take quite a while to adjust.

I still think that removing HCV might enable the immune systems to suddenly create huge numbers of HCV antibodies. And it might just be something as simple as a sudden bump in this gluey goo quasi protein in our blood that is playing hell with us. Unfortunately there seems to be no test, as of yet, to ascertain the actual levels of sticky HCV antibodies in the blood. If there was then this possible cause of immune reaction inflammation could be ruled out of the equation.

The scary part is that many different types of antibodies for other virus types and other disease pathogens are known to cause all sorts of issues including heart trouble. So there is much research yet to be done about exactly how HCV antibodies effect the body long term.

What I can say, for me at least, is my immune reactions to common problems like colds and flu have not been stellar post treatment. But at least I am still fighting off the bugs effectively. Age is a consideration but the recovery from being very close to advanced cirrhosis is a very hard fight.

I have stopped having severe hemorrhoid issues with the small arteries that was starting to plague me 4 years ago. So I am fairly certain that my arterial system is actually improving as my cirrhosis eases off.

My GP has said that regular endoscopy is not called for in my case because if there is no history of esophageal varices. I have also noticed that I have less bleeding from my gums.

So it is not all doom and gloom
Cheers
Eric

How are you Eric? It has been awhile since I have been on the forum. I have been quite busy since taking the treatment and kind of faded away a bit. I have a thought on this subject, and this applies to me only. I have to say that I had this for so many years that I am sure it caused some secondary effects in my body, that even though the virus cleared, doesn't necessarily mean that the damage that was done went away. My doctors ask me if I feel like I have post side effects and I have to honestly say no....I am 30 years older....and my body is 30 years older,,my joints really ache on some days.....and I kind of have a flashback of when the virus was active.....oh...my joints were soooooo bad....,,I did suspect that my vision was affected by the medicine,,,I even called the pharmaceutical computer the second week of treatment and reported what was happening. My children noticed that my eyes literally changed in color and was totally creeping them out,,,,and I was having difficulty seeing. My vision has been declining at a rapid rate, but, my best friend, who is also 50....and does not have hepatitis,,,, tells me how bad her joints ache and that she has had to get 3 different prescriptions for glasses in the last 9 months. I think that in some cases....I am speaking for myself,,,the post issues I have are because I am aging. I used to like to blame everything on the hepatitis before treatment,,,why not....it gave me a reason for every single issue I had going on in my body.... I would like to blame it on the Harvoni I took, but I dont believe that to be fair. The group of friends I run around with are all falling apart, and we have a lot of the same symptoms, vision, joints, thyroid, gut problems etc... Do I think its possible that the medicine gave some people post side effects? Absolutely,,,,I think it is possible. But if you look at it this way,,,,I had the extreme joint issues,,,couldnt even walk some days,,,,I dont expect that 30yrs of joint pain and me overcompensating because my joints hurt so bad didnt wear down other parts of my body and other joints and cause permanent joint issues. I am grateful the virus is gone. Would I do it again...Absolutely! The benefits for me getting rid of the virus, not being infectious, and preventing FURTHER damage and possible cirrhosis was number one on my agenda.

scout

mario555 · « **Reply #24 on:** July 09, 2016, 09:31:05 am »

Scout. I agree 100% with you! While being infected I was so busy fighting the disease that I was putting my aging pains aside. The rate of progression of my disease (I was F4) gave me only a few more years of 'normal life'. Personally I had nothing to lose in taking Harvoni.
It has been barely a year since I completed my treatment and my life has turned around! I am now brimming with health and I appear a bit younger than my age at 61. I am now F2 and my energy level is twice what it was before treatment.
I do have side effects such as tinnitus and dizziness which are receeding very very slowly but.... I am alive! I lost half of my hair after treatment and I don't give a sh..! Because I am alive! Would I do it again? Why not? I am alive!
Would I recommend the treatment to someone with little symptoms? Probably not while awaiting newer treatment. But when the disease affects your life, it is a no-brainer. We are Guinea pigs for this novel approach in killing viruses and many new treatments will probably use the techniques developed by Gilead. We should find ourselves lucky that the "only" viruses that can now be killed are the hep c viruses! Once again, thank you Gilead

Scoutdoy · « **Reply #25 on:** July 09, 2016, 02:26:08 pm »

Mario, that is the ultimate goal, to live. However, everyone on this forum will understand what I am about to say. Having hepatitis is bad enough physically, but no one, I repeat no one can truly understand what it is like to have hepatitis unles they have it. Not a spouse, a sibling, your best friend, not even your parents. Your labeled and you have a black cloud over your head following every move you make constantly reminding you that you can infect someone, you are slowly dying, the stigma from society is cruel and undeserving so you keep your illness to yourself and live with the daily emotional stress of having this dreadful disease and your alone. I just wanted to shout out...I am not a fucking whimp, every joint in my body is on fire, I am so exhausted I don't think I can make it to the bathroom, my organs truly hurt! Instead, you tell a select few people who will still love you and tell you they understand...but they can't understand...the medical community is still in the dark ages about hepatitis, and nurses and doctors are unbelievably ignorant to the disease,even today, about transmission, how everyone is affected differently, and that there is a cure. I was in the hospital a few months ago...thank goodness it turned out to be a misread cardiology report, but while I was there I was asked by almost every nurse that went over my records " how did you get hepatitis, and then the cardiologist asked me to? I responded to each one " well, I am not a drug addict, nor am I a whore and I want to know why you feel the need to know...isn't it irrelevant?" I got so pissed I contacted the Board of registered nurses in my state from my hospital room and filed a complaint and also with the hospital. It's unprofessional and ignorant to ask patients how they got a disease, it's irrelevant. 3 months later that hospital did an awareness class that all nurses had to attend on professionalism and ethics about how inappropriate It is to ask patients how they contracted hepatitis or AIDS. My sister is a registered nurse at that hospital and was required to attend. So Mario I got much more than just my life to live, I don't have to worry about infecting my children, or the general public and the cloud of secrecy that consumed my life for so many years is gone. I am not a leper, or a pariah...I am just me again!

Scout

FutureThinker · « **Reply #26 on:** July 09, 2016, 02:59:11 pm »

Scout, do I ever hear you!!!!!!! I've ranted on this forum in several places on this totally unnecessary/inappropriate stigma that "medical professionals" just seem unable not to smear on us, they just can't seem to stop themselves. I am so very proud of you for filing a complaint --- BRAVO!!!! While I am disgusted that you even had to consider such, I am extremely proud of you for having the insight --- yes, insight, something terribly lacking here --- to go thru with the action to file a complaint.

I really agree with all the recent posts on this thread. The bottom line: We are all going to get thru this! It may not be fun, and it sure isn't pretty more often than not, but we will get thru this. And I have to thank all of you for helping me do that, get thru this with some sanity and hope. And, I'm still waiting for SVR 12.... FT

FutureThinker · « **Reply #27 on:** July 09, 2016, 03:54:51 pm »

KimintheForest, I am so happy to hear you are feeling better. I know this has been a really hard time for you, and am so glad to hear it is nearing its end. Hopefully now, onward and upward! Happy for you, FT

Nikki · « **Reply #28 on:** July 09, 2016, 08:54:29 pm »

:-

I am so sorry. i also am going through test after test and in so much pain i feel suicidal at times.

When put on this poisen i was told NO SIDES ZERO you will not know you are on it. Well for those of you familiar 2 weeks in and i was a wreck i was a wreck by day 3. I had to discontinue meds and never saw that doc again, other issues going on in that dept that were not ethical.

Now i have RA, my MRI of my back is awful, all my joints are inflammed. I walk around seeing "aura" all day non stop. I have to get am MRI of my brain, doc wants to put me on an anti depressant well errr who wouldn't need something. I had a breakdown at the office the other day. Lost my job, out of work, money and in chronic pain. This is from a doc that PROMISED ME THERE WOULD BE NO sides. i was doing so well i guess my "teaching hosp" isn't happy until they mess you up. Every dept has ruined me i have one left lets see whats left there. My doc left and i am on pain management.

In recovery for over 30 years and the docs are more concerned with covering up the Harvoni doc then me. I just had it, a super that is harrasing me and land lord that won't fix shit. I am allergic to mold my apt is infested and now this. Last year i was happy, joyus and free. I dread getting up in the morning, i swear the pain and depression is so bad. I am sure you can here my anger its awful to be in my skin i was never like this. Its like i am losing control of everything.

There is a petation PLEASE sign it we need all the names we can. If you doc didn't tell you about the side effects and NONE of ours did please go to Change.org put in harvoini and there is a link to doc and side effects. Please sign it we are all miserable or some of us are and they out and out lied to us. its our health and they sold us out to big pharma. Its disgusting.

I hope we get better but i have a bad feeling. I was STABLE thats what has me so furious. STABLE for 35 or more years and NOW the docs are dying to balme me. I am beginning to hate docs they stopped careing.

KimInTheForest · « **Reply #29 on:** July 09, 2016, 09:31:48 pm »

Thank you Nikki for the info about the petition. I found it and signed it on principle. The public has a right to know whatever the FDA has collected on this or any drug. And patients and doctors need to know. So yes, the FDA does need to disclose the data it has gathered on adverse events related to Harvoni.

kim

Wiglaf · « **Reply #30 on:** July 12, 2016, 02:17:36 pm »

I read the petition and signed it. I may have shot myself in the foot because I am a Gilead shareholder.

Mike Conwell · « **Reply #31 on:** September 01, 2016, 05:04:17 am »

well here we go I'm up at 3am. because my back and neck hurt so bad I can't stay in the bed. It keeps getting worse for me. I can't seem to find any answers. This is really getting old. For those of you still having back, neck,and joint pain for me I don't see the light at the end of the tunnel. I finished 3-25-15 and still feel worse than before treatment. Waiting on the class action against Harvoni to start so I can jump on it before this drug totally eats our bodies up.

WholeFoods · « **Reply #32 on:** September 01, 2016, 02:48:31 pm »

Same here Mike, twice this week for me. I'm not giving up hope. I can get more done than a year ago, but am worried what's going on with my back and neck. It's been a rough summer for me. The extra demands on my energy have left me drained and in pain. I need a long rest, but whose reality is that?

HazelAustralia · « **Reply #33 on:** October 10, 2016, 12:55:55 pm »

Hi Mike and Wholefoods,
Have you been tested for osteoporosis?
H.

WholeFoods · « **Reply #34 on:** October 10, 2016, 07:28:14 pm »

Quote from: HazelAustralia on October 10, 2016, 12:55:55 pm

Hi Mike and Wholefoods,
Have you been tested for osteoporosis?
H.

Had a dexa scan more than a few years ago. My doctor calls my pain arthritis of the facet joint. Post treatment has made the symptoms worse and a lot more profound in that the flare ups are more debilitating and frequent. Also have the added joy of increased digestive problems that started after gall bladder surgery. On a more positive note, in addition to eradicating the virus, I also lost the oral lichen planus that plagued me for ten years. It used to help make eating pretty difficult. I dont miss it one bit! I just think this is our immune systems gone crazy for losing the virus. I am pretty sure my digestive problems are autoimmune also. I think Mike and I would be happy to have our immune systems calm down. Sometimes I take half a dose of Benadryl and find a small measure of relief.

Mike Conwell · « **Reply #35 on:** October 10, 2016, 08:06:33 pm »

No joke on my side!!!! I just had neck surgery and I'm recovering.

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