Author Topic: Finished 12 wks of Harvoni Jan 8 and not feeling good (Read 421733 times)

hepcme · « **Reply #400 on:** November 08, 2015, 11:52:22 pm »

Good way to describe it ...confused is right !! I have been an up person and very active and even productive, even before TX as long as I took care of myself and ate well..Now if it comes on , nothing will jump start a happy moment till it passes...and I hope this pases..I am sure it could be worse , I hear of terrible depression issues...THANKS hepboy I will try the iodine...I always have it in cupboard and forget...still so much to keep track of...

on another happy note.... I can say that the itching in the palms of my hands has stopped, and my fingernails and skin have improved..wow I looked 90 yr old at one point right after TX...I almost considered shopping at night..as I was imbarassed to go out...I still look really wrinkled but even my daughter said your face and skin look better...more patience....ahhhrg

hepboy1 · « **Reply #401 on:** November 09, 2015, 06:49:42 am »

im wondering if the protein harvoni blocks would cause that? in the skin ? all the itching dryness? im at like around day 32 0r more I lost track, anyway very little dryness at all still taking very warm showers , I do take many supplements though I have no sides at all just in the first week or 10 days minor things I should get my 4 week test back tonight had them Friday

Mugwump · « **Reply #402 on:** November 09, 2015, 09:58:48 am »

Quote from: hepboy1 on November 09, 2015, 06:49:42 am

im wondering if the protein harvoni blocks would cause that?..........

No.
The proto nonstructural protein being blocked by harvoni is part of the reproduction cycle of hcv not a useful protein that is created by the human body.

Quote

Nonstructural protein 5B is a viral protein found in the hepatitis C virus. It has the key function of replicating the HCV's viral RNA by using the viral positive RNA strand as its template

So if you lose HCV from your system you lose the ability to create NS5B, which is a good thing IMO. It is entirely possible that proto proteins that HCV create also trick the liver into not killing off and discharging HCV infected cells and instead the zombie cells then go on to become factories for the production of fully mature virus particles. Like a scene from the movie Alien where the creature puts an egg into the stomach of the victim then keeps the victim alive until the thing bursts outs in the adult stage of the life cycle.

HCV is that scary in the way that it infects, replicates and slowly kills people, we still do not know how many proto proteins it creates in the liver and what they all actually do. But we can certainly guess that the proto nonstructural proteins created by hcv rna do things to help the reproduction of HCV and quickly killing a liver cell which is infected is not a useful function, especially when the aim of the virus design is to reproduce until the cell membrane bursts.
So it is entirely possible that HCV produces other nonstructural protein material that mimics a myriad of key liver cell functions.

A true horror show in a hepatocyte!

hepcme · « **Reply #403 on:** November 09, 2015, 11:06:01 pm »

Quote from: JillLynn on February 13, 2015, 01:03:14 pm

love all of you.....Battle the Beast.....Mel...I love "BEAST MODE!" that's perfect!!!!
Sunrise...peach tea sounds yummy....thank you!
Man I hurt like heck too....joints and aches. Yes I do a lot physically.....but dang is this normal? I'm only 60 years young.
Hearing you all ache too does make me wonder if this is post treatment stuff.
When I told my hepatologist he looked at me and said.....hmmmm, most people feel so good after treatment. so I scratched my head, paid his fee and left.

You all help so much. People not on the treatment just don't know and I get that. So thank you all for sharing and caring!

Jill

I don't know but there seems to be a labored breathing issue post TX...it comes and goes with me and don't know what triggers it...I think it is foods...but can't detect it yet... 100% eucalyptus oil at healthfood store , little bottle with eye dropper., boil a little water in bottom of pan. put 4-6 drops of oil in pan and close lid for a couple seconds...crack lid open and inhale the steam deep, you will cough...if you do it right...don't burn yourself...it is suppose to kill virus and germs in lungs...my grandkids do it now and love it... Seems they have reported this side effect along with the heart issues...more is coming out now about the sides , I think we will be hearing more...I will look for that news release...

hepcme · « **Reply #404 on:** November 09, 2015, 11:15:28 pm »

Post TX now 9mo...I remember the first time I cut myself after being "cured"
By habit , I first panicked and tried to contain the blood site , when I stopped and thought .....OH IT IS ONLY BLOOD...what freedom that no one could understand but those of us that have had a fish hook or a bloody nose that wouldn't quit while visiting the grandkids....
Thank you Jesus

Mugwump · « **Reply #405 on:** November 10, 2015, 03:12:10 am »

Quote from: hepcme on November 09, 2015, 11:15:28 pm

Post TX now 9mo...I remember the first time I cut myself after being "cured"
By habit , I first panicked and tried to contain the blood site , when I stopped and thought .....OH IT IS ONLY BLOOD...what freedom that no one could understand but those of us that have had a fish hook or a bloody nose that wouldn't quit while visiting the grandkids....
Thank you Jesus

I a nutshell you have expounded the best reasons why we need to communicate about our new joys and tribulations at being free from this God forsaken virus. Being free then gives us the responsibility to help others get over the fear and terror which this disease has wrought upon us as all as a society. Here is how I feel about this truth which is better expressed by music.

https://www.youtube.com/watch?v=VY1w3EhXqwo

Or as a video of the work

https://www.youtube.com/watch?v=ZnIDTOR9EkM

Peace
Eric

hepcme · « **Reply #406 on:** November 10, 2015, 07:32:34 am »

Thanks , true dat ....I like the second video...

hope2bcured · « **Reply #407 on:** November 10, 2015, 08:09:19 am »

Quote from: JillLynn on February 27, 2015, 05:48:49 pm

sending you "get well love and wishes" Nicole.
Are you feeling better today?
Sure hoping so.

Jill

HI Jill,
I noticed you wrote this original post in Jan, its now 10 months later. How are you feeling? I am 8 weeks post Harvoni yesterday, and I am still not well. My current status is the overwhelming fatigue that I never had, and awful joint pain, right now its a bout of tendinitis in my left wrist and my entire body feels like a box of pain. I cant help but not feel emotional by this. I was told I was taking a cure and would have my life back, this is no life

hepcme · « **Reply #408 on:** November 10, 2015, 10:38:34 am »

Back to basics: I have noticed since I got back from my family and a birthday party of which I ate like I was "cured" ...well I ate junk food and didn't stick to my routine and am really paying for it...being "cured" is not over , I guess....the liver really can't handle that stuff after 7 yrs of eating healthy....I am feeling better now that I am back to my routine...
tinnitis is terrible
fatigue is better
joint pain comes and goes but it is getting colder also
sleeping well
digestion is working again, "daily"..lots of veggies and detox tea, fruits, smoothies with protein powder
Protein
taking a hair, nails and skin supplement..a hair stylist told me that is the last place vitamins and nutrients get to....with a healing liver..I believe it
and am going to start Milk Thistle again...read an article that says we should post TX, took it for 7 yrs but stopped at TX....
I am also disappointed at the recovery of HCV...but the good news is ...it bought me time as the alternative was ___death and more suffering...
I am keeping hope even though it has been almost a year now...things are slowly coming around...

hepcme · « **Reply #409 on:** November 10, 2015, 10:41:19 am »

Detox waters ...
https://www.yahoo.com/makers/-215811297.html?nf=1

I also do a random liver flush 3-4x a week with:

FIRST THING IN AM......
Lemon slice
1/4 cup warm water
splash of hot sauce

BattleTheBeast · « **Reply #410 on:** November 10, 2015, 04:30:10 pm »

I am cured, that's a miracle and I am completely grateful but I am also dealing with a multitude of issues post treatment.

I have severe joint issues now which I never had before, I have days where I don't know how I am going to make myself move because of the pain and exhaustion but I move. I walk and I walk and I push and I push and then I collapse but I refuse to give in to this. So the Rheumatologist says I don't have RA which is a blessing but I have all the symptoms as if I had RA except it moves around. Hips, legs, back, arms, hands depends on the day. Blood results are really stable except for high blood ammonia which I have been dealing with for a while.

I am glad I got into the water habit while on treatment and I continue to gorge myself with at least a gallon daily. 8 x 8! Working on eating as healthy as possible and making myself get up and work every day. By the time Friday hits I am down for the count for a bit but again, I refuse to give in.

I really wish they would have told us that some of us may really struggle with the aftermath....

Mel

hepcme · « **Reply #411 on:** November 10, 2015, 10:39:54 pm »

They didn't know...."They" are just finding out through us...we are it...I don't think they ran that drug that far out for sides ....gotta get that money comin in...We are the test tubers
I hear ya....I have bouts of falling into a deep pit of despair to only fly back out again and crash land in bed with confusion and mental/physical fatigue..what a roller coaster of a drug ...and I thought LSD was a ride....

Mugwump · « **Reply #412 on:** November 10, 2015, 10:40:44 pm »

Mel your situation is almost identical to the results I am going through. Major joint pain and myalgia that seems to be relieved to some extent with sensible exercise. I forced myself to work turning over the garden and it helped but sleeping on my side is causing me to have major joint pain! I have found that if I do some slow careful relaxed full body yoga and ti chi it really helps. Also doing careful slow technical exercises on the classical guitar really helps my finger joints get over the pains and strain.

I am waiting on testing for RA that my doc called for as I do have a family history of RA on my mother's side. So we are ruling out that possibility first. But my GP is almost certain that the joint pain is being caused by an excess of some antibodies being created by my liver now that it is functioning normally.

All the results that Katie, you, myself and some others here are experiencing has to be coming from something specific that is happening to those of us who clear the virus.

We are survivors, our immune systems must be much more active than others who did not survive long term HCV infection. Otherwise I suspect that like quite a few other people who I have known that have died an early death from HCV would have survived long enough to see this day.

All we can do is cry the tears of those who in their fortune have lived to see this incredible day when HCV is no longer a long term death sentence for humanity.

Again, all my best wishes for you and all who are going through this!

Eric

WholeFoods · « **Reply #413 on:** November 11, 2015, 11:10:50 pm »

Anyone having digestive issues and no gall bladder might try maximum strength Ultra-Zyme by Nature's Plus. I have had a measure of success with eating more comfortably if I take some of this. Otherwise, I get a full feeling in my intestines with gas and bloating unless I eat very simple and small meals. It has ox bile in it which is usually for folks without a gall bladder.

Katie · « **Reply #414 on:** November 13, 2015, 01:10:40 am »

I found this article interesting and disturbing. Makes one wonder....huh?

"Do we have such hypnosis and blind faith in our doctors simply because of their white coats that we believe they are infallible? And, in turn, do they have such blind faith in the medical journals recommending a given new wonder medicine or vaccine that they rush to give the drugs or vaccines without considering these deeper issues?"

What they fail to address, is when you have a dangerous illness and a cure comes around, you just want it and figure they know what they are doing and keep the blinders on. It is ultimately our choice.

http://nsnbc.me/2015/06/19/shocking-report-from-medical-insiders/

I am still grateful for Harvoni but it would have been so beneficial to know of possible after treatment side effects and what long term consequences these would have. All of the test groups were very small considering how many HepC infected people there are. Hopefully everything is fine and it seems it is a small percentage of us with issues and perhaps those issues are not even related to the treatment....but it sure would be nice to have confidence in that.

I don't mean to panic anyone but felt I needed to share this.

Katie

Mugwump · « **Reply #415 on:** November 13, 2015, 04:09:18 am »

Katie I have always believed that is more beneficial to go fishing than it is to catch fish. In a way Harvoni is an exercise in faith, yes but without the opportunity to have a chance to clear the virus I am certain that the pre existing stenosis in my lumbar spine, metabolic imbalances from severe liver damage and other problems that wrack my body would be much worse by now.

I was hoping beyond hope to be able to go back to full time hard physical work by now but it looks like I will not be able to work anywhere near as hard as I did only 8 years ago.

I truly hope your body heals up and there is no greater degradation to your quality of life.

Here on the wet coast we are starting to experience our annual wet season and we all know it is a season of storms and bleak dreary days. It is an annual shock to our systems almost as bad as watching Fox News and expecting to be stimulated intellectually!

A family friend and mentor, George Clutesi
once commented upon how the tradition of storm season was to "send your worry away with the clouds that bring the storms of winter" He was a great light in much darkness and despair for his people on the coast. He was also a great artist and writer.

Keep your chin up and hopefully our winter of weakness post treatment will pass and we too can learn to "send away our worries on the clouds" the way he did.

All the very best wishes to all of us who are having a hard time post treatment.

Eric

beto · « **Reply #416 on:** November 13, 2015, 01:40:20 pm »

Katie, all,

I am not biting the hand that feeds me, however, the pharmaceutical industry is a business and touting success and rendering a positive spin on drugs and research is the rule, not the exception and is business as usual. They are after all a business. That is why drugs are so expensive, especially ones that offers a cure. It is up to us to do our own research and probe further than the mainstream media, which is easily influenced by powerful interests and amazing news.

I was the one that informed my doctor of Harvoni and sovaldi and the other "surgical tactic" drugs. I had my head pretty deep in the research.

I pushed for harvoni because I found it to be the best in my opinion based on all of the digging. The original study results were impeccable but, the market testing is showing some (though very little) vulnerability, especially for some reason in the VA camp.

That said, I know we are all on the right track and yes, the industry could be a bit more forthcoming with (more thorough) side effect information. The thing is, many side effects are subjective, individual, nebules and difficult to convey. They are going to report the ones that the majority have and the ones that fit a definite symptom profile. Like 'head ache". This forum is the best place to come for learning of side effects.

It's up to us make change and to put pressure on the powers that be. Big Pharma is big business not a Government health institution. Back when these Harvoni type drugs were in trials, an organisation was started to pressure Gilead to partner with Bristol Meyer (since they both had a drug that performed well in combo) and then to curtail prices. They could not even raise 100 k signatures. Now how is it that there are 200 million of us happy heppers out there and we could not raise just 100 k sigs.

Anyway, I am blessed to have received Harvoni. My hope is that more folks can benefit. I am happy the drugs that offer cure with fewer side effects are starting to pop up. If I am cured in the end...I will never take Harvoni again. Most drugs are designed to be taken every day for a lifetime.

Thanks for the info Katie

KimInTheForest · « **Reply #417 on:** November 13, 2015, 01:54:27 pm »

Thanks very much, Katie, for posting that link to the article about clinical drug trials, and how unreliable and even fraudulent the results are so much of the time. Shocking really - especially when you see the stature of the medical experts publicly making such bold statements... the editors of Lancet and NEJM, and a doctor/scientist at a UBC research lab in Vancouver. Yet no coverage of their statements in mainstream media. And that's not even mentioning drugs like Harvoni that are given 'breakthrough drug' status so their approval can be fast-tracked and they can get to market even sooner (years sooner!) than most drugs in trials.

I am not dissing Harvoni. And I would make the same choice to take it, if I had it to do over. And I would encourage others to do likewise. But it does make you wonder since so many of us have had these otherwise unexplainable post-treatment recovery problems after Harvoni. Doesn't mean that Harvoni has anything to do with it. But it would be foolish and unscientific to not examine that possibility further...

kim

badbradley · « **Reply #418 on:** November 13, 2015, 02:14:59 pm »

The biopharma industry overall has a poor record on transparency....

http://www.fiercebiotech.com/story/gilead-sanofi-singled-out-worst-offenders-failing-disclose-trial-data/2015-11-12

KimInTheForest · « **Reply #419 on:** November 13, 2015, 02:18:34 pm »

Quote from: badbradley on November 13, 2015, 02:14:59 pm

The biopharma industry overall has a poor record on transparency....

http://www.fiercebiotech.com/story/gilead-sanofi-singled-out-worst-offenders-failing-disclose-trial-data/2015-11-12

That's a good (albeit scary) article too. "Gilead was singled out as one of the worst offenders..."

Thanks for sharing bradley.

kim

Katie · « **Reply #420 on:** November 13, 2015, 02:33:44 pm »

Quote from: Mugwump on November 13, 2015, 04:09:18 am

I was hoping beyond hope to be able to go back to full time hard physical work by now but it looks like I will not be able to work anywhere near as hard as I did only 8 years ago.

I truly hope your body heals up and there is no greater degradation to your quality of life.

Here on the wet coast we are starting to experience our annual wet season and we all know it is a season of storms and bleak dreary days. It is an annual shock to our systems almost as bad as watching Fox News and expecting to be stimulated intellectually!

Eric

Thanks Eric and hello to everyone! Just wanted to say I love the rain and love the dark and gloomy days. It is a time for me to reflect and to do some simple things, getting back to basics such as baking bread and enjoying my stocked pantry with my canned and smoked fish with chowders and stews. We have had some awesome storms with winds over 70mph and my stout little home holds up well so I feel safe and secure. I am very fortunate and grateful.

I am improving and determined to get my endurance back. I am one of the lucky ones as my overall health is excellent so being "tired" is not that big of deal in the big picture, just an unexpected irritation I am dealing with. When comparing what could have been my health status without treatment, this is minor.

I posted the article more to allow people to know there are often things we go through for which there is no easy explanation and even the medical profession doesn't understand the ramifications of treatments. Everything we ingest is going to have an effect. Just look at the TV commercials for pharmaceutical products. WOW...who would even want to take the majority of them? SO Havoni is no different and I too would take the treatment again.

I am wishing everyone and easy winter and time and energy to spend with family and friends! We are an amazing group, with compassion and the ability to help and inform so many who follow us.

Keep the faith...

Kaatie

Eric: Loved the FOX News comment! HA!

dragonslayer · « **Reply #421 on:** November 13, 2015, 03:53:58 pm »

You know, given the truth of the above articles, despite political pushback that the government regulatory agencies are receiving , one has to wonder where we'd be if some political factions had their way and the FDA were abolished. I find it hard to believe that market forces alone would bring us the truth about the drugs we take and protect us from pharma/medical charlatans.

slats1056 · « **Reply #422 on:** November 13, 2015, 04:51:17 pm »

Amazing the details that slowly emerge as time passes. We are all at least linked to Big Pharma by the Meds we need. Some of have known for years about the smoke & mirrors , as well as the $ gouging that is happening. Scary indeed, but enlightening as well. Between Big Pharma, Insurance cos., Banks, Doctors, and the Federal Gov't. we really don't stand a chance of equality in the process of who does or does not get the treatment they need and deserve!
All we can do is fight for the truth and what is rightfully deserved and is ours. It is in My opinion a leap of blind faith that is sometimes chosen when the Golden Prize is held above all else. Don't get Me wrong!! I would still do the Harvoni. It is definitely a godsend in My perspective. I have trouble justifying the ease with which I received the Rx. with so many more out there that are much more in need and don't have the resources available to them!

THE CRAZY TRAIN CRUISE ON!

Katie · « **Reply #423 on:** November 13, 2015, 05:05:51 pm »

I don't understand why anyone, politician or citizen would push to end our regulatory departments, put in place to protect us, and trust corporations to look out for the health and welfare of the people. Many of the agencies certainly could improve and most are underfunded and too short staffed to carry out the inspections and enforce the regulations.

I can't imagine what would happen without FDA or EPA.

I applaud the research scientists that can move forward with discoveries in spite of having to jump through all the hoops. They are the real heros in medical research and with a history of working for the government I sympathize for those at FDA and other agencies, as I know the complexities and restrictions within our bureaucratic system. It would be beneficial if the system could be simplified but that is wishful thinking in my opinion.

Enjoy your weekend!

Katie

(actually I can imagine what could happen and it isn't pretty)

WholeFoods · « **Reply #424 on:** November 14, 2015, 05:28:36 pm »

Not at all surprised by the info in the article. My guess is the more transparent companies likely have been sued in the past for insufficient transparency. Perhaps Gilead has been under the radar in that respect. This is one of the problems I Have with the whole concept of for profit medical, as it seems to force common business practices that your local car lot would employ. Unfortunately I don't have a better solution.

My G I was hesitant to write a script so soon citing all the "new drug" reasons. We all had that concern and we all rolled the dice hoping for the best. I knew 10 days into it there might be problems. I knew 10 days EOT there were definitely problems. All I know is I am still alive and they say I remain hepc free as I just got SVR24. I am happy for that and always will be.

I will continue to take life one day at a time and to h*ll with all the people who throw rocks at me because they don't have an ounce of empathy in their entire body. I've been researching Fibromyalgia and seems like it could describe what I've been dealing with, for much longer than the last year, actually. It just seems more pronounced now. My PC says I can look forward to having many of the associated ailments diminish with time. I hope the "fibro" diminishes. I am concerned that it seems worse.

Katie · « **Reply #425 on:** November 14, 2015, 07:46:28 pm »

Hi WholeFoods! Sounds like we are in the same boat, but want you to know I am improving with baby steps each day and I have seen improvements in many subtle ways. Even my fingernails are better, my hair is getting its shine back. It looked like straw in spite of me spending a fortune on different hair products and the past 6 months it just began to improve. Those little things give me verification that my overall system is doing much better. My skin has improved too and I can see my eyelids again. I looked in the mirror one day and went...OMG my eyelids are back.

Considering what my future health issues would have progressed to with Hep C I can deal with this for awhile and know it will improve given time, patience and being good to myself.

Congratulations on your SVR24! Terrific news and hang in there.

Take care and keep in touch. Happy Thanksgiving!

Katie

hepcme · « **Reply #426 on:** November 14, 2015, 07:49:39 pm »

I am going with throid issues....seems alot of symptoms point to it...I am trying iodine supps....3 drps a day 150mg a day....I do take a multi-vit with suppelemnts and minerals that has iodine in it...I think the drops are better...but I feel great today...even if thyroid T3-4 bloodwork comes out norm does not mean that thyroid is in balance...have heard that a couple of times..docs do not know about thyroids....either lol

hepcme · « **Reply #427 on:** November 14, 2015, 10:40:48 pm »

Katie
I agree, I have seeen small improvements also..the anger of not being able to sand my front door and finish my back yard stone and pavers over rides the progress.....I too have fingernails and they aren't spooned anymore, my eyelids are better also, my hair does seem to be falling out but it may be the season as it does that once a year...my side doesn't hurt so much, only when I eat wrong...the itching in my palm is gone...tinnitis is worse than ever...I went walking and had a great time today..walked 4 miles and swam 5 laps and went in sauna...ahhhhhhh what a treat..!!!
Was a good day

KimInTheForest · « **Reply #428 on:** November 14, 2015, 10:56:49 pm »

What is the reason/basis for the itchy palms that a few people have mentioned? This has been part of my post-treatment syndrome or aftermath or whatever we might like to call this pattern of post-treatment problems that a number of us are experience post-Harvoni.

My palms of my hands (and occasionally even soles of my feet) have, at times, been excruciatingly itchy post-treatment. Never had any of this during treatment or prior to tx. Never had it before in my life. It is not a rash. They are not red. There are no bumps or any visible sign of irritation or skin problems - just intense itchiness.

This has been going on, on and off, throughout my 3.5 months post-treatment. I would be in big trouble if it were continuous. But it is only occasional. Other than that, I am pretty much back to normal now and feeling quite good most of the time (finally!). And certainly glad to be rid of Hep C! Just need my hemoglobin back.

kim

hepcme · « **Reply #429 on:** November 14, 2015, 11:37:24 pm »

It is called Puritus...I did't have it bad during my disease, only my palm and sometimes ankles...my neighbor said her neice had HepC and when they went in the car , she would leave flakes of skin all over the seats from scratching...I didn't have it like that , thank God, and it went into Post TX ...but very very rarely do I experience it...like you say occasional...

Experts believe pruritus in people with liver disease is due to the accumulation of toxins (such as bilirubin) that are not effectively processed or filtered by the damaged liver. One function of the liver is the production of bile, which helps digest fats. Cholestasis, or blockage of the flow of bile through the liver, can result in a build-up of bile acids and bilirubin in the blood. High bilirubin levels cause jaundice (yellowing of the skin and eyes), and pruritus is common in people with jaundice. Certain extrahepatic (outside the liver) conditions associated with HCV, such as autoimmune conditions, may also lead to itching. More commonly, itching due to dry skin can be a side effect of HCV treatment; this is not the same as pruritus due to advanced liver damage.

KimInTheForest · « **Reply #430 on:** November 15, 2015, 12:21:19 am »

If this is related to liver dysfunction, i am not sure why I only experienced it post-treatment and never at any other time in my life. It seems like post-tx would be the least likely time to experience something related to compromised liver. I think it might be something else. It's not a normal itchiness. It's a very unusual feeling and limited to palms of hands (sometimes soles of feet).

kim

hepcme · « **Reply #431 on:** November 15, 2015, 08:38:45 am »

Hi ya Kim
Don't know but sure sounds like what I have..same areas and occasional now..I almost feel like it is gone but it is a symptom of HCV and I also heard it said that Harvoni or TX did exaggerate the symptoms of pre existing and of the virus also....I have hope some day it will be totally gone as it has decreased mega times, as it was frequent...I would get it on the inside of my left arm also...like you say ,, thank God it is only occasional... and short irritable...this too shall pass...docs will just give you cream and more drugs to get other problems with their symptoms...I won't use any of it....
11 mo Post TX Harvoni (8wk)
Undetected
bloodwork in range
Thyroid 164 (H)
BP (Low)

dragonslayer · « **Reply #432 on:** November 15, 2015, 08:51:20 am »

Some of these symptoms can be so hard to figure out. Before treatment, I would get bouts of serious itching, but only on the tops of my feet and ankles. And mostly, at night right before bed.. It was bad enough so that occasionally, Id leave scratch marks deep enough to draw minor blood. Every time I searched on line, it led me to cirrhosis as a causal factor. Yet my biopsies showed only stage 0-1 fibrosis at the same time I was experiencing this itching. Then, when it continued through and after treatment and SVR, it really had me stymied. I developed a 'theory' that maybe my crocks type slippers were causing it; maybe I was allergic to the rubber in them? So I stopped wearing them, and the itching disappeared, and its been gone since then; over a couple of months now!

Go figure!

hepcme · « **Reply #433 on:** November 15, 2015, 03:58:50 pm »

Well, dragonslayer, that is not a croc o crap...lol isnt' it great to have self awareness ? and wisdom ?? look how this disease has made us look at ourselves for ourselves..so we can do for others....God is good ...alllll the time

KimInTheForest · « **Reply #434 on:** November 15, 2015, 04:25:51 pm »

some very interesting possibilities from both of you, hepcme and paul/dragonslayer on the itchy hands/feet issue. thx

kim

just wondering · « **Reply #435 on:** November 19, 2015, 04:08:44 pm »

I have 17 days left out of 90. I have my gullbladder removed and a liver biopsy. The doctor at first said I was in the very small group of only needing 8 weeks. They lost results of biopsy, and this doctor now says nothing. I have not one more bit of info or why I got kicked up in weeks as he ordered 12 with out a explaination. I am sorry but I am lost in all of this. I have no Idea of a week one, or four result. He speak to me once, Hello, talks into his recorder then rushes me out. Now less with 3 weeks to go I have no idea on anything. Please shead any light on any of this

GLCII · « **Reply #436 on:** November 19, 2015, 05:16:31 pm »

Just Wondering

Is your doc working out of a hospital? Or are your labs done at a certain hospital? The reason I ask is that most hospitals, if not all, use the My Chart or other software that allows patients to go online and see their results.

Katie · « **Reply #437 on:** November 19, 2015, 06:45:49 pm »

Just Wondering...don't stress over having 12 instead of 8. With 12 your chance of coming back undetected is improved. Have you had blood draws to check your viral load? If you have I would talk to the doctor's front desk and tell them you'll be stopping by to pick up copies of your lab results, all of them. They are yours and will give them to you.

Many times we have to really be proactive and part of doing so is knowing what to ask and what to request. I always make a list of questions when I go to the doctor as it is easy to get side tracked. If he refuses time with you, corner his nurse.

Good luck to you. This forum is a great place to get information once you have the test results.

Katie

WholeFoods · « **Reply #438 on:** November 19, 2015, 10:17:25 pm »

Just wanted to add that I got my SVR24 letter from gastro today which tells me to get annual liver panels in case it ever comes back, but is unlikely. Also says my thyroid was checked. I'm assuming since that's all it said means thyroid is fine? I didn't see anything about TSH on my CBC report in MyChart. I should check it again, but wanted to post here that the fatigue and achy muscles I get aren't thyroid. At this point I'm starting to go with the body and liver healing and regenerating.

Before I know it, will be one year since I started treatment. In a way, it seems like it went by fast, but looking back, those were not easy days and I'm glad thats behind me.

With Thanksgiving coming up, I feel very greatful the treatment worked. Last Thanksgiving was when I got the script. For Christmas I got approved for Support Path PAP and by the time it was my birthday I had the first bottle of Harvoni in my hands. I was SVR12 on July 4th. Haha!! Pretty cool!

KimInTheForest · « **Reply #439 on:** November 19, 2015, 10:25:01 pm »

Congrats on your SVR24 Whole Foods!

Woohoo!

kim

hope2bcured · « **Reply #440 on:** November 20, 2015, 10:06:53 am »

Thank you so much Katie for sharing that!! That is exactly what I believe, I also believe from my own personal experience on other Harvoni groups, esp the ones that the people are just starting or on it, and without a doubt there were folks in their who worked for Gilead, as nobody was allowed to share their side effects, you were completely hushed up your post deleted and sometimes you were removed, thats what happened to me. I think its horrible. I am so sorry I didnt research Harvoni more, and waited a year or two to see how folks did. Its a creepy world we live in, $$$ rules it ..

Quote from: Katie on November 13, 2015, 01:10:40 am

I found this article interesting and disturbing. Makes one wonder....huh?

"Do we have such hypnosis and blind faith in our doctors simply because of their white coats that we believe they are infallible? And, in turn, do they have such blind faith in the medical journals recommending a given new wonder medicine or vaccine that they rush to give the drugs or vaccines without considering these deeper issues?"

What they fail to address, is when you have a dangerous illness and a cure comes around, you just want it and figure they know what they are doing and keep the blinders on. It is ultimately our choice.

http://nsnbc.me/2015/06/19/shocking-report-from-medical-insiders/

I am still grateful for Harvoni but it would have been so beneficial to know of possible after treatment side effects and what long term consequences these would have. All of the test groups were very small considering how many HepC infected people there are. Hopefully everything is fine and it seems it is a small percentage of us with issues and perhaps those issues are not even related to the treatment....but it sure would be nice to have confidence in that.

I don't mean to panic anyone but felt I needed to share this.

Katie

WholeFoods · « **Reply #441 on:** December 06, 2015, 08:32:13 pm »

Thank you Kim. I wanted to say that this fall Ive been having more muscle and joint pain than I have in years. I have hope this will ease with time. Although wont be totally devastated if it doesnt as a few immediate family also struggle with frequent bouts of this kind of pain. Makes one greatful for the good days, but also hard to plan ahead for things cuz you never know when it will be a down day (unless its summer.) guess you get used to it after awhile. Makes for an isolating lifestyle though.

Ross7130 · « **Reply #442 on:** December 08, 2015, 02:30:51 pm »

Interesting. I just finished 24 weeks on Dec. 8. I'm Geno Type 1A w/slight scarring and previously did the Ribaviron and Interferon protocol at NIH. Only had a few headaches with no fatigue or nausea; and worked out 5 days a week. Now experiencing headaches and fatigue. Caught me off guard. I'm going back to my routine today. This is minor, I did 24 weeks with minimal side effects. The Interferon made me crazy

. Harvoni is the bomb!

Katie · « **Reply #443 on:** December 08, 2015, 03:41:06 pm »

Hi Everyone! I have been putting off posting as have been waiting to make sure my improvement isn't a temporary thing but it has been over 2 weeks so I am EXCITED! My horrible after treatment side effects are all but gone! No more fatigue after 8 months of feeling too weak to do anything but basic daily chores (and I had to talk myself into tackling them)!!! It gradually improved but nothing close to normal. I still do not have my endurance built up however that's is probably due to doing so little for so long. I am sleeping great after suffering with insomnia for over a decade, my mental clarity is back, my skin and nails have improved so it just took my body time to adjust. Along with the severe fatigue came a form of depression which I have never experienced before so I am feeling like my old, happy, positive self and actually feel like socializing again.

I have joint issues however they came from the hard physical work I have done with injuries and arthritis but now I have the mental attitude to better deal with those issues.

I just wanted to let you know if you are suffering some effects post treatment, to not give up as things will improve.

Enjoy your holiday season and don't worry, I will be checking on all of you. You are my family and I appreciate all of you. This has been an amazing journey and it has been an honor to get to know you. Thank you for your support this past year!

Katie

KimInTheForest · « **Reply #444 on:** December 08, 2015, 04:29:52 pm »

That is SO encouraging Katie! I had hoped and assumed that the post-treatment issues some of us experience would be temporary and eventually subside for everyone as our bodies adjust to our new lives post-HCV. I was sidelined for at least 2.5 months post-treatment, but am now feeling quite good.

kim

slats1056 · « **Reply #445 on:** December 08, 2015, 04:45:27 pm »

Katie, it's great to know that You are feeling good after so long. Being almost eight weeks post EOT I'm still having some issues. Great to know that it can improve in the foreseeable future. Apparently there are a handful of us that are taking a bit longer to recuperate from the long and arduous past as well as treatment. It is strange how differently this effects each of us so differently and in so many ways. Waiting patiently for the New Year for My twelve week post EOT blood draw.
Here is to Your continued good health and all the good things to come!

Mugwump · « **Reply #446 on:** December 08, 2015, 06:01:41 pm »

Quote from: Katie on December 08, 2015, 03:41:06 pm

Hi Everyone! I have been putting off posting as have been waiting to make sure my improvement isn't a temporary thing but it has been over 2 weeks so I am EXCITED! My horrible after treatment side effects are all but gone! No more fatigue after 8 months of feeling too weak to do anything but basic daily chores (and I had to talk myself into tackling them)!!! It gradually improved but nothing close to normal. I still do not have my endurance built up however that's is probably due to doing so little for so long. I am sleeping great after suffering with insomnia for over a decade, my mental clarity is back, my skin and nails have improved so it just took my body time to adjust. Along with the severe fatigue came a form of depression which I have never experienced before so I am feeling like my old, happy, positive self and actually feel like socializing again.

I have joint issues however they came from the hard physical work I have done with injuries and arthritis but now I have the mental attitude to better deal with those issues.

I just wanted to let you know if you are suffering some effects post treatment, to not give up as things will improve.

Enjoy your holiday season and don't worry, I will be checking on all of you. You are my family and I appreciate all of you. This has been an amazing journey and it has been an honor to get to know you. Thank you for your support this past year!

Katie

That is great to hear Katie! I still have some joint pain but it is backing off and my sense of how well my endurance is recovering is also better. It is no longer a chore to walk for a few hours. I just had my follow up appointment and found out my status is slightly positive for RA antibodies so I have another requisition for a test. My mother had RA so it does not look great. Long before I went on Harvoni my joints were starting to act up. Here is hoping that improved liver functions, sensible exercise and diet will keep this beast of a condition in check. I read the report online and I guess it was inconclusive but I took it to mean negative. My doctor set me straight, unfortunately I am slightly positive for the arthritis antibodies, so this news comes as a bummer to say the least.

Further to that it bears mentioning that HCV is know to exacerbate the immune responses to some diseases including thryroid immunity (graves disease), and arthritis. SO now that the dragon is officially dead perhaps the inevitable slow degeneration of my joints will be even slower! And I will a decent mobility for a longer period as I age. I can only hope this is the result of HCV being removed from my system. I did post on the CAN HARVONI CAUSE RA thread that I was negative for RA so I spoke too soon. My joints are not that badly swollen yet but they started to swell ten years ago and have stayed relatively the same for the past 5 years so I can categorically state that: things are actually slowly getting better with my joints, muscle strength and endurance.

So I don't think I will be able to take up gymnastics or professional hockey any time soon but at least I know I can lace up a pair of skates this winter and do some slow figures again like I did when I was a kid! I will be another one of those old guys you see out on the ice trying desperately to look like Sonya Henie LOL

But if I do enough work on my power skating just maybe I might be able to play seniors hockey by next year! I don't look forward to putting on a jock again though until I lose a substantial amount of the pork that I couldn't burn off effectively because of cirrhosis and the fact that as HCV progresses to cirrhosis it plays hell with your ability to exercise effectively.

Keep your stick on the ice Katie you deserve to be able to do the things we both love to do like wade out in the water to catch fish! I am certain that you will be out in your waders casting for the beautiful Silver Coho and Pinks up in your area by next season

Eric

Katie · « **Reply #447 on:** December 08, 2015, 07:19:32 pm »

Thanks for your responses! You guys are wonderful!!!

Eric: Unfortunately my hiking and stream fishing days are over due to a very unstable knee. I don't have RA (thank goodness) but osteoarthritis and the damage is progressing and my case is complicated so I won't bore you with it. I can still do my gardening and woodworking as long as I have a well thought out plan and so far our winter is mild with rain and temps in the high 40's right now. Walking through snow is difficult for me so I favor mild winters at this point..

I am doing good and as we age we just have to modify our behaviour to the issues that show up. We just have to focus on the positives and accept our limitations all the while striving for improvement. No big deal....at least we still have those pesky birthdays!

Keep the faith and know you are all on a good path with a good future!

Katie

Mugwump · « **Reply #448 on:** December 08, 2015, 10:33:26 pm »

Katie: Get a pontoon boat you will be amazed at how versatile they are. If you can get by with a narrow knee brace then they can do wonders for your core strength! I know if I had not used one for the past 20 odd years at times going fishing would have been almost impossible for me.

There are light models that are 7 feet in length that have a very strong but light frame designed specifically for gentle class one to two rivers. They are fantastic in estuaries in the slow water and if used carefully are very environmentally friendly. Because they are so light they do almost no damage when you set an anchor. Unlike drift boats that rip up the bottom. You will need to learn to cast seated but once you get onto to it it is incredible how peaceful it is being away from the crowds of set pseudo bottom bounce flossing snaggarts on the bank.

I know a 70 year old who uses a big wheel off road walker to go fishing! He wears knee braces under his breathable waders. And the great part is they can access streams where you cannot wade. I am sure there are people up where you live who are in the same boat so finding someone to do short planned drifts with and share the water is not that much of an issue issue. I will pm you with links to what you need to get on the water. Just make sure you get a water proof camera though and attach it with a lanyard to the frame of the boat. Down here in BC there are more cameras, fishing rods, sun glasses and assorted paraphernalia at the bottom of lakes and streams than there are in a Cabella's tackle department.

In fact one of my best rods was salvaged from a lake 10 years ago by my buddy Doug!

Part of recovering from this nightmare is discovering what is possible and it is exciting to see people who were almost at St Peter's gate snap out of it. Anyway back to studying some latin tunes by Antonio Lauro tonight after I finishing my night job cleaning banks. HURRAY I AM FINALLY BACK TO WORK.

Cheers Katie!
I know you can go fishing next season. Damn the torpedoes!

P.S> The link is not me playing but it has a very nice rendition of one of the tune that I am about to record, El Negrito. I finally have my sense of joy in music back in a way that is best reflected in these wonderfully melodic gems by Lauro. AND I am about as far away from a Latin in my background as it gets. LOL

alankc · « **Reply #449 on:** December 11, 2015, 06:30:03 pm »

I just finished 12 weeks of Harvoni and feeling like crap. Super fatigued, joint pain, back pain. I was fine until about week 10 with just mild fatigue and headaches. Now I have pain and extreme fatigue. Still no comparison to the interferon and ribovarin treatment which I had to shop. What should I expect going forward?

ALAN

Mugwump · « **Reply #450 on:** December 11, 2015, 07:37:19 pm »

Quote from: alankc on December 11, 2015, 06:30:03 pm

I just finished 12 weeks of Harvoni and feeling like crap. Super fatigued, joint pain, back pain. I was fine until about week 10 with just mild fatigue and headaches. Now I have pain and extreme fatigue. Still no comparison to the interferon and ribovarin treatment which I had to shop. What should I expect going forward?

ALAN

Welcome to this forum Alan. There are indeed many here who have experienced more fatigue caused effects post treatment. It seems that some of us are just in for a rough ride. I found that getting careful exercise and slowly working on normalizing sleep patterns was the most helpful thing. I started treatment (24 weeks) not feeling to terribly bad but my mobility, mental capacity was starting to be severely compromised by HCV. I would say that I was used to feeling absolutely terrible all the time.

Personally I completely avoided medicating myself with tylenol during treatment and post treatment. Instead I did things to keep active. My recovery took about 4 months. Yours should be less if you have less liver damage to deal with. It is slowly becoming apparent that the healing process post treatment will differ for everyone.

I hope you start feeling better soon. Harvoni does cause your system to go into overdrive and perhaps it is a bit like recovering from an injury, much depends upon how much damage HCV has done prior to treatment and the level of cells in the liver that needed to be exchanged because HCV had killed them.

I am starting to suspect that HCV on its own can keep liver cells from dying by influencing liver chemistry. The logic behind this hypothesis is that it is not in the best interest of the virus to kill off liver cells quickly. Instead HCV has mechanisms to keep the victim alive. A logical way for the virus to evolve and spread. Diabolic as hell itself but not without reason. Perhaps this is one very good reason why only direct acting antivirals can deal effectively with this horrible disease and previous treatments relied too heavily upon the natural immunity of the person to clear the virus and that is the only reason why they were not as effective.

Cheers

Eric

BattleTheBeast · « **Reply #451 on:** December 11, 2015, 07:38:36 pm »

Quote from: alankc on December 11, 2015, 06:30:03 pm

I just finished 12 weeks of Harvoni and feeling like crap. Super fatigued, joint pain, back pain. I was fine until about week 10 with just mild fatigue and headaches. Now I have pain and extreme fatigue. Still no comparison to the interferon and ribovarin treatment which I had to shop. What should I expect going forward?

ALAN

Hi Alan,

I can only tell you how its been for me. Its been a very very slow recovery but it is happening even though i have some days that arent so great overall Months later I am on the mend (i hope). My case is different, i was on meds for 30 weeks, 21 of them with Harvoni. Just take care of yourself, eat well, exercise lightly as your body allows and it should happen.

Mel

Katie · « **Reply #452 on:** December 11, 2015, 09:22:46 pm »

Hi Alan, I felt GREAT while on Harvoni and as soon as I stopped I felt terrible for four months with very slow improvement as time went on. I still had little endurance and severe fatigue until about 2 weeks ago and am feeling much better. That's over 8 months of feeling crappy. You can check out my previous posts. Hang in there, be good to yourself and push yourself to move and get exercise, even if it is just a little walk. Don't allow yourself to spiral down. Congratulations on your treatment as you are on your road to good health.

Katie

Mugwump · « **Reply #453 on:** December 12, 2015, 06:06:49 am »

Quote from: Ross7130 on December 08, 2015, 02:30:51 pm

Interesting. I just finished 24 weeks on Dec. 8. I'm Geno Type 1A w/slight scarring and previously did the Ribaviron and Interferon protocol at NIH. Only had a few headaches with no fatigue or nausea; and worked out 5 days a week. Now experiencing headaches and fatigue. Caught me off guard. I'm going back to my routine today. This is minor, I did 24 weeks with minimal side effects. The Interferon made me crazy . Harvoni is the bomb!

Welcome fellow 24 weeker Ross.
Sorry to be late to respond. It does seem that even though Harvoni is the bomb if you have more liver damage at commencement of treatment then you might very well go through a difficult time after treatment as your liver heals. It is very hard to quantify and is somewhat subjective. But like having a serious injury it is going to take time for the liver to heal to the full extent possible and the time it takes will vary greatly between individuals.

It is a crapshoot even for the doctors to understand the mechanics of what happens in detail. Best guess is that some of us were under a more concerted attack by HCV and our immune systems were not keeping the virus in check.

Little is known about how long a single infected hepatocyte lives and functions usefully after initially being infected with HCV. I am theorizing that it can live a fairly long period of time infected before it bursts and sends the load of mature virus particles into the blood stream. THEREFORE you can have a high level of functional liver cells that are infected but still alive but at the same time have a very low viral load count.

I am also speculating that as components in Harvoni stops the replication of the virus directly in the cells they then become exposed to the immune system as being dead and are cleaved off in huge numbers thus creating these side effects to a greater extent EVEN POST TREATMENT!

Also as the liver heals the natural immune system starts to normalize and create more HCV antibodies so this also might explain in detail why some of us are experiencing very pronounced HCV like symptoms post treatment.

I am certainly not a clinician, PLANT FROM GILEAD or other agent of anyone. So indeed I might just be blowing smoke but as an ex forest fire crew boss years back I can claim that the evidence of smoke after a fire usually means there is some smouldering going on inside somewhere.

Thus the logic of my theories and why this aspect of post treatment side effects need careful examination. Post treatment study of those who survive serious illness can and does yield important medical breakthroughs that can have far reaching consequences for medical science. For instance possible breakthroughs in the treatment of the most difficult auto-immune diseases and perhaps other conditions like MS, Graves and a host of other diseases that are baffling scientists.

Welcome to the forum and please post to this thread with your SVR status report. Many watch this thread and it is how we tabulate the numbers her who clear and how long there treatment was. Not at all mandatory but it is good information for the statistician in all of us

http://forums.hepmag.com/index.php?topic=2665.0

Cheers
Eric

Katie · « **Reply #454 on:** December 12, 2015, 01:19:22 pm »

Quote from: Mugwump on December 12, 2015, 06:06:49 am

Little is known about how long a single infected hepatocyte lives and functions usefully after initially being infected with HCV. I am theorizing that it can live a fairly long period of time infected before it bursts and sends the load of mature virus particles into the blood stream. THEREFORE you can have a high level of functional liver cells that are infected but still alive but at the same time have a very low viral load count.

Just remember the blood test is the circulating virus and not actual replicating cells as they are in the liver tissue. I had a doctor tell me the viral load count isn't really the concern but what is actually happening in the liver. Not sure what that means for what is actually happening in the liver but I am supposing you could have a low viral load one week and a high count the next week or in reverse, or you could have a high viral load where the liver isn't being infected and damaged much at all. I know my viral load fluctuated from 2 million to 16 million throughout the 10 years I was tested and my liver is fine. It is a complicated disease and viruses are like alien parasites so we need to be careful with our speculations.

My theory is since our liver wasn't able to do it's job of removing toxins and cleansing our body for so long the toxins accumulated causing health issues and it is going to take some time once it is back up and running to get us back in balance. I believe that is what is happening with me as my hair, skin and nails look better than they have in years. I have my eyelids back since the puffiness and swelling is gone too! I celebrate the fact that my liver is functioning and doing it's job. It is a great feeling!

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Videobycarol · « **Reply #456 on:** January 30, 2016, 10:24:22 am »

Hello All!
No One has posted here on this topic recently so I will. Ive completed 12 weeks of Harvoni 6 days ago and don't feel so good. Oddly I felt better while talking the Harvoni. I was undetected at 4 weeks and all liver levels are normal. I have no other health issues that can be determined. I had labs done 3 days ago concerning my post Harvoni symptoms and was told liver, pancreas, red and white blood cells, etc. are all normal and there is no reason for my symptoms. My Dr. is unaware of any post Harvoni symptoms. So I called Gilead and talked with a nurse there for a good 20 minutes. He said he's talked with many people who have completed harvoni and none have described my symptoms. He was unaware of them also.
I have never treated for hepc before. I have 1a for 30 years. Stage 4 fibrosis. I had very mild side effects while taking Harvoni which included an intermittent headache for the first 2 weeks and some fatigue that came on about 3:00 each day. My ears started ringing 6 weeks in to my 12 week treatment and my vision got worse some. I continued to work throughout without any trouble. I'm an accountant.
But now that I have stopped Harvoni I have constant fatigue and irritability with headache and still ears are ringing and upset stomach. Also legs are aching now. Basically it's Harvoni side effects but more severe or noticeable.
Gilead said it would take 2 weeks for the Harvoni to leave my system and that people have reported feeling better over a period of months as the liver recovered. The nurse told me it has nothing to do with my immune system recovering or doing anything at all. He said Harvoni only attached to the hepatitis virus receptors and reacted there. And since I no longer have any viruses the Harvoni is attaching to nothing. It's a very specialized drug. He left it at that with no further explanation.
So I took Harvoni for 4 weeks to deactivate the virus and another 8 weeks just to be sure, and the Harvoni was attaching to very little or nothing. It was just running thru my system I guess?
Anyway, I feel kind of bad still. Hoping these post effects will diminish over time and I can enjoy being hep free!
Carol

hepcme · « **Reply #457 on:** January 30, 2016, 11:26:12 am »

Carol,
Don't count on it... oh so sorry, I didn't mean to discourage you it was just the first thing that popped into my head....It is a beautiful day here in AZ, colder than norm but the heat will soon be here so I am trying to have fun...and think cool thoughts of enjoyment, and ya know < I do...I do have fun and am so grateful to have these days free of worry from the virus of HEPC,,,starting in the morning NOT looking into the toilet every moment to see how I am doing...grey , green, yellow or brown and what do I need to eat to fix that problem...LOL then brushing my teeth to see if they are going to bleed, and then OMG what?

BLOOD !!!!! clean it up fast with bleach...then eat a piece of toast , cereal and then back to bed from fatigue and ache...YES TODAY IS BETTER...but just as confirmation from our fellow hepc friends on the forum to know we aren't crazy ...would be nice to have confirmation from the medical field also that these sides are real...I don't think they really know and money right now is more important to them....recupe from years of trials and experiments and now docs have to be making the big bucks also...what is going to come with all the kids now on heroin..you can order it and they deliver it to the door. for only $10 a hit...why, I could have done tht three times a day ...instead I could only afford once a day and the rest was vodka...
Enough of that , I am so glad to hear someone talk of leg(groin femoral artery area) pain...sorry it is you..but I keep going to doc and he said it was my back, so I have been going to a chiro and now my ins has changed , I have to wait for Authorization, now but my legs , upper thighs and sometimes lower calves will "PANG" inner most area like deep thrombosis..my intake ins. guy said there was low pulse but not to worry..yeah right...so I am waiting on authorization for a vascular Dr.... more DR DR DR....headaches have come back but not often, I am one year post TX and the tinnitis is lowder than ever....I think the med, Harvoni, did some nerve damage ...some one told me it was , Maybe, the autonomic nervouse system,,, gee only the one that controls all auto nerve functions...
I am still happy to live and to have this day to enjoy God's wonderful creation...I am going to paint today and relax from a week of hell...lol
love to you and congratulations on finishing TX....I have been thinking that also....WHY DID I CONTINUE MEDS when I was alread Non Detected at 6 weeks? I was fortunate to only have to go on 8 weeek TX but it still did damage..any drug that potent would have to leave a trail of some kind ...I still am hopeful for the future , it is still early,,, I too was TX neive, 1a, 9 mill, stage 4 and ammonia levels were offffff the chart...I can relate alot ...eat healthy and take good care with exercise , sleep, rest, foods and serenity to lower stress....God Luck

CHepCFree · « **Reply #458 on:** January 30, 2016, 12:12:41 pm »

Seems many make it through Harvoni unscathed while many experience ong term: fatigue, tinnitus, constant pressure headache, dizziness, neuropathy, severe joint/muscle/bone pain, digestive issues, heart irregularities, breathing problems, just to name a few. I speak with over 40 people who are post TX and have long term problems. I personally am 11 months post TX and have many of these problems, problems which I never had before taking Harvoni. I pray that these issues subside or go away but at 11 months my hopes are diminishing.

Personally, had I known the potential side effects of this drug, I would not have taken it.

hepcme · « **Reply #459 on:** January 30, 2016, 12:54:11 pm »

Just had to lay down from dizziness...I think it is the tinnitis - - and - - googlin up that nerve issue =findings are totally inclusive in issues and symptoms of TX...I am going to remain possitive and hope for the best in recovering and healing...I'll give it another 8 mo...lol... ought to do it...maybe 10....
Hangin in there with the ups and downs...

Videobycarol · « **Reply #460 on:** January 30, 2016, 12:57:37 pm »

The leg pain is inner thigh like soft tissue. I did consider it as possible thrombosis even tho I've never had that before. I felt ok before Harvoni, just tired a lot. Great to know I've probably got new problems! I was just so excited to try Harvoni because I was so scared to try the old treatment.
I don't understand why my Dr. Isn't recognizing my symptoms post treatment. He did suggest I now follow up with my primary care Dr for a work up.
This is what I get for leading a life of debauchery as a younger person I guess!
I will post of I get any relief from these post tx symptoms or a reason for them.
Enjoy this nice day! Carol

Katie · « **Reply #461 on:** January 30, 2016, 03:13:23 pm »

Hi Carol, I too suffer from negative sides post treatment. I am one who had a Harvoni high during treatment so it was shocking when I completed treatment and felt worse than before Harvoni. Much worse. For a few months it was all I could do to take care of daily activities and would have to talk myself into getting up and move. But I did find, the more I do, the better I felt.

I called Gilead and they did call me back for more information and also contacted my doctor. This was last March, but they had no info for me or suggestions. I just think it is important for anyone with post sides to report it as it is the only way anything will be documented and down the road maybe there will be some research on the issues.

My theory is since our liver wasn't able to do it's job of removing toxins and cleansing our body for so long the toxins accumulated causing health issues and it is going to take some time once it is back up and running to get us back in balance. I believe that is what is happening with me as my hair, skin and nails look better than they have in years. I have my eyelids back since the puffiness and swelling is gone too! I celebrate the fact that my liver is functioning and doing it's job.

I have slowly improved but my eyes still burn, even though I sleep well I am constantly tired and lack any motivation. I have lost my spark. I went through many tests and everything came back perfect so I just keep plugging along and hope this isn't my new normal. It isn't who I am. I am looking forward to spring and getting out in the garden and getting better exercise. Fresh air helps.

So, you are not alone....pay attention to your body and hang in there as we have to be proactive with our own health. I decided, the doctors haven't a clue how Harvoni affected some of us or why, and it isn't their fault. Our bodies are such a complicated ecosystem and everything is affected when the balance is thrown off. We are the group of real life after Harvoni and it will take time for the complications to be figured out. Am I sorry I took the treatment? Some days yes but overall, no. Liver failure would not be something I would want to go through.

Keep us posted, and good luck to you!

Katie

hepcme · « **Reply #462 on:** January 30, 2016, 03:32:45 pm »

Katie
So glad you are finally getting some relief and hope "to get back to yourself-
I know what you mean, I too as a creative person have to push myself to get motivated...I know what is old age and what I can do and what I can't ...and I know what is lacking to do what I know I can't do ..LOL did that make sense ? I did get out in my back yard and busted up 5 concrete blocks to fix a small garden wall that was crooked...my back ached all the next 2 days,,,NOW that is old age coming in...and my hands were totally aching from picking up all the broken rock and pouring 6 buckets of pebble stone ...that too is arthur...I went to jacuzzi at gym and soaked and swam 10 laps..the back yard remains in a mess but tomorrow is another day..I have been sneezing and have been coughing and tired...I know I have a cold...I took echenichea / goldseal , chicken soup, vit c and am better already..these things I can control and have a choice...the healing of hep C like you say, I will have to wait on time and hope my choices of doing exercise, good foods, detoxing and lemon flushes in
AM and rest will aide in ridding toxins and aiding the healing process...
Waitiing for the spring also...
anne

Videobycarol · « **Reply #463 on:** January 30, 2016, 05:35:47 pm »

Thank you for your kind and thoughtful response Katie.
I do have minutes where I start to feel better I guess. I'm going to wait it out and see. At least I don't think I will get much worse! I was worried I may have actually poisoned myself by taking Harvoni.
I'm not even worried about SVR at this point as I think I will likely get there one way or another. I'm concerned but not obsessed I guess. I do hope for SVR tho! I'll know end of March.
If my ears would quit ringing I'd be happier! I feel like I've been to a Metallica concert all day. I told people to stop talking outside my office yesterday as I couldn't stand it. I'm crabby lol!
Happy Saturday night, Carol

Katie · « **Reply #464 on:** January 30, 2016, 06:40:51 pm »

No problem Carol and the odds of you reaching SVR are EXCELLENT!!!

I have ringing in my ears too and it fluctuates daily. Sometimes it is almost gone and some days it is shrilling. I can't handle it when a phone connection is bad or if someone has a bluetooth and outside noise comes through. I will say, I had tinnitus before treatment so I can't put that on Harvoni. Mine came on with a severe sinus infection, years ago, so I think I am stuck with it. While on Harvoni, I had 2 days where it was totally gone, so I got my hope up, but it came back. I crave the sound of silence!

I am going in for an eye examination to see if I need stronger glasses as the sand paper eyes bother me and I do a lot of reading. The worse of it is how tired I am. It is no longer the bone deep weakness of fatigue but just no energy. I have so many projects, which I normally love to do, and it is disappointing. Something is off, but I guess it isn't life threatening, so I remind myself how much worse so many have it, how much worse it could be and I am still grateful each day for what I have.

Positive thought sent your way! I am looking forward to doing a Happy Dance for you at SVR12!

Katie

WholeFoods · « **Reply #465 on:** February 06, 2016, 09:42:40 pm »

It has been one year since I started the Harvoni 3 month treatment and can say I have not regained full energy either. It has been a very slow process gaining any endurance back at all. I'm still susceptible to illness, but not like before when all it took was one sneeze to get me sick, so my resistance is getting better. I now get a good case of brain fog and fatigue when viruses go around the office and unlike before, I now get full blown cold and flu symptoms including sore throat and sniffles. Before, I would only experience body aches, chills and intense back, neck, shoulder and head pain. My gastro problems are only occasional now.

Two things that persist almost daily are arthritic stiffness and pain in wrists and other places... it travels, and hearing problems. Loud noises, including the voices of people who talk loud, cut through my brain like a knife, it's awful! It feels like I have arthritis of the eardrum! If I spend the day in a loud place, I'm literally exhausted by the end of the day.

All I can say is the human body and immune system is a real wonder, quite an amazing mechanism and extremely complex!

BlueSky · « **Reply #466 on:** March 07, 2016, 07:39:29 pm »

Hello everyone. Just got on forum today. It's been 4 months after my treatment with Harvoni. Was on it for 8 weeks. I had the option of 12 wks but felt so bad wanted off since Virus undetected. Still undetected however if I had read this forum before, I may not have gone thru the treatment. I'm miserable. I started getting depressed while on it as well as severe nerve pain esp in my low back, right leg. I've always been a very active and positive person. Now I spend a lot of time talking myself out of bed. My energy is low. I'm depressed and don't want to be. I thought it was just me. Seeing a therapist that said, "well you might have had a preexisting problem." If I did, it was quite manageable! I'm scared that this will last. I will try liver and whole system detox. It probably will take several months. Thank you all for sharing your experiences. Sorry you had to go thru it but at least for me it helps to know that I'm not the only one. The Dr now tells me it could have changed my brain chemistry!!! I want my old chemistry HA! Take care

Katie · « **Reply #467 on:** March 07, 2016, 10:08:55 pm »

Sorry to hear that, Blue Sky, I have lots of experience with joint and back issues. The lower back and right leg almost sounds like scoliosis or a slipped disc. I ruptured L5 and it effected my leg, and still does. Acupuncture really helped me but I would see an orthopedic doctor and get x rays or even better, an MRI. Also have your calcium level checked as some people suffer greatly from taking too much calcium they really don't need. I went to 5 doctors, told them how much calcium I was taking as per my doctor and not one bothered to check it out or even ask me about it as a possible cause. I figured I would stop the calcium and my hands improved almost immediately and within 2 weeks they were back to almost normal. I let my doctor know and it was like..."I've never heard of that before"! What?

I sympathize with the depression and fatigue. Those are gone for me now and very slowly disappeared but my energy sucks. I used to outwork everybody (hence my back and joint issues) but now I just look at my half finished projects.

Good luck to you and hang in there. The body is complex and everything is connected. I have had many very subtle improvements and remember, we've been filling our body with toxins with our liver compromised so it may take a long time to be totally up and running!

Katie

WholeFoods · « **Reply #468 on:** April 03, 2016, 04:20:31 pm »

Hi all, Checking in again.

In a couple weeks, it will be one year EOT for me. As winter turns to spring, I am starting to feel a bit better. I still get "sick" twice a month and must spend the day in bed with aching pain and fatigue. Anxious to see if this goes away as the weather warms. We have had record rainfall since November of last year and more flu activity in the area than normal.

Yesterday I hand washed my car inside and out including spray wax. I have been unable to do much of anything of this magnitude since treatment due to fatigue and weakness. Whenever I tried, it would make me sick for a few days afterward. Today I feel sore muscles and a little tired, but not too bad. I have developed a few patches of dry, flaky skin and those patches are flared up. I put on some OTC cortisone cream which seems to be helping.

Just wanted you all to know, feeling hopeful. Starting to think these lingering symptoms are still immune-related. I set my next compare-to-see-how-I'm-doing check in for this time next year.

Hang in there ya'll! You will feel better with time.

Videobycarol · « **Reply #469 on:** April 03, 2016, 11:44:11 pm »

Hi gang!
Update on my EOT. It's been 2 months since I finished Harvoni and I've been sick the whole time with a sinus infection. I'm on the fourth round of antibiotics and my ears have never stopped ringing. They started ringing in December. Possibly I picked up the sinus infection and just didn't realize I had it, so I let it go so long my ears started ringing? I can't tell anymore as I can't recognize a common cold or virus if I have one. I'm just used to being tired and feeling bad.
So anyway, we proved I actually do have a sinus infection thru a CT scan, but can't cure it. I have an appointment with an ENT in May.
I've been to the ER last week with this illness because I was so miserable. They couldn't help me but suggested I may have a problem with my immune system since I can't recover from a sinus infection during the past 10 weeks.
So is my immune system bad from having hepc or is it bad from the Harvoni? Or is it even bad at all and I'm just antibiotic resistant? Same problem has occurred with uti's over past few years. It takes 2 months and 3 rounds of antibiotics to cure it. Just never experienced this with a sinus infection.
I'm so confused and tired of being sick. I've had tons of blood work done. No one has said I'm having an immune system issue. Everything comes back fine.
All my doctors say Harvoni causes none off these problems. They also say the hep would not be the cause.
I'm real tired of my ears ringing for sure. It has not stopped for 1 minute since December.
Wth. Anyone?
Thanks, Carol

Katie · « **Reply #470 on:** April 04, 2016, 01:19:21 am »

Carol, I had a sinus infection prior to Harvoni, that lasted a good year. Horrible. Have they checked your vitamin D level? I was at 13 and normal is somewhere between 30-70! I would get everything that came around and I definitely think Hep C interferes with your immune system, plus when the liver is compromised the toxins build up throughout your system. Doctors sometimes forget that everything is connected. Everything.

Another thing you could check is to make sure you don't have a low grade infection with teeth. That can sometimes brew for a long time before it is discovered.

Rinsing with salt water can help but you have to do it correctly for it to work If you need instructions on that let me know.

Hope you get this solved as it is horrible. OH...once I got my Vit D level up to 40, with supplements, I am Never sick and haven't had another sinus infection.

Katie

Mugwump · « **Reply #471 on:** April 04, 2016, 01:38:34 am »

Katie; yes you are on track with possible post treatment nutrition problems causing issues, but I suspect there is much more going on here with what is happening to our immune systems!

Carol; I too have much more pronounced sinusitis since being cured of HCV. And many do experience what appears clearly to be more intense immune reactions to the common things that normally do cause allergic reactions.

If you are getting a bacterial infection because of inflamed tissues in the sinuses then it can become serious. Especially if your immune system cannot clear the infection. Fortunately I have not progressed that far and antihistamines have helped at times to clear up the constant inflammation caused by allergies. Perhaps the old school treatments are the best choice, try a vaporiser and oil of balsam the way our parents and grand parents did for us as kids, Remember Vic Vapour rub and the vaporiser with a towel over the head steaming away your inflamed nasal cavities?

Remember also that oil of balsam is a known antibacterial agent the same as Picea mariana (black spruce) and members of the balsam fir like the western hemlock tree are also known sources of antibacterial compounds that can be vaporised and were used for thousands of years to effectively clear sinus infections. Only recently do we take commercial antibiotics to treat simple sinus infections and unfortunately all the strong antibiotics are starting to lose their effectiveness.

Don't forget that it is histamine reactions that are at work causing the tissue to swell and degrade and this is an immune reaction to irritants, so your doctor saying that having had HCV has nothing to do with what is happening is a little suspect because there is no doubt that HCV slowly suppresses the immune system over time by slowly degrading liver functions.

HCV does alter the human immune system and it is becoming obvious that as those of us who remove it from our system will take time to normalize our immune reactions. This is because our livers can now effectively create more of the necessary components that the immune system needs to effectively work. UNFORTUNATELY for some of us this also clearly seems to include a sudden hyper reaction to things that stimulate an immune response.

So it is NOT Harvoni that caused your immune system to go nuts it is the fact that like a child your liver is adjusting and regrowing and your body needs to re-educate essential parts of your immune system that are in the liver.

Funny but for the first time since I was a kid I am starting to have a wet runny snotty nose!!! So the rebirth of my liver and immune system is now well under-way.

An immune system is a two edged sword. It can do damage to tissues and will kill off tissue to remove an invasive agent even if the invasive agent is essentially harmless it can cause what can be dangerous reactions.

Cat dander, pollen, dust mites and all the other crap that causes sinus issues are my nemesis! Certainly I am hoping that my immune system will back down soon but till then I will just get out the dust mop and take a sinutab or whatever in hope of some relief.

The liver is the most complicated piece of biology, it is responsible for much more function in the human body than any other organ. It is an amazing self sustaining biochemical factory with filtration capabilities. I can easily see why it is harder for those of us who have had liver damage to adjust to having a more normal one post treatment.

Cheers
Eric

hopefulhelena · « **Reply #472 on:** April 04, 2016, 12:27:57 pm »

I just wanted to comment about post tx side effects- which I believe are due to the drugs. I agree with Jill, Sunrise and Nicole that symptoms such as fatigue and joint pain- which quite a few of you have mentioned (among other symptoms) seem to be quite common.

I was on Sofosbuvir and Daklinza- the combination I think is similar to Harvoni; only Daklinza is made by a different company. I was told that joint/muscle pains were not side effects of the meds (which is wrong, see below) and that having these post treatment could be something else-not the drugs.

I find this hard to believe as these symptoms (along with the fatigue) started half way through tx (like you said Sunrise) and Id say (some days) are even worse now. I believe that because these DAAs are quite new even the medical staff are not aware of what the side effects are.

I found an article by the European Medicines Agency which listed Arthralgia (joint pain) and Myalgia (muscle pain) as common side effects of the meds I was on, yet i was told by medical staff this wasn't the case.

Unfortunately there is so little in the public realm about post tx symptoms. This is why I search here and the Uk site to find out how others are coping. At least its reassuring to know you're not alone.

Its also great to read that people get better as time goes on- I noticed Jill said she was feeling a lot better now after 10 weeks (?) .

I did read a post (somewhere?) that suggested the immune system could still be in hyperdrive ( the DAAs work with/boost the immune system to fight the virus) and so after tx the immune system may still be in overdrive...who knows? Im not medically trained but it makes some sense?

Good luck to all of you still on tx and to those waiting on post tx tests to see if you have slayed the dragon. I'm EOT UND and have 7 weeks to go for the 12 wk post tx test. The side effects can be disheartening but eradicating the virus is the most important goal.
Best
Helena

Mugwump · « **Reply #473 on:** April 04, 2016, 03:13:43 pm »

Quote from: hopefulhelena on April 04, 2016, 12:27:57 pm

I just wanted to comment about post tx side effects- which I believe are due to the drugs. I agree with Jill, Sunrise and Nicole that symptoms such as fatigue and joint pain- which quite a few of you have mentioned (among other symptoms) seem to be quite common.

I was on Sofosbuvir and Daklinza- the combination I think is similar to Harvoni; only Daklinza is made by a different company. I was told that joint/muscle pains were not side effects of the meds (which is wrong, see below) and that having these post treatment could be something else-not the drugs.

I find this hard to believe as these symptoms (along with the fatigue) started half way through tx (like you said Sunrise) and Id say (some days) are even worse now. I believe that because these DAAs are quite new even the medical staff are not aware of what the side effects are.

I found an article by the European Medicines Agency which listed Arthralgia (joint pain) and Myalgia (muscle pain) as common side effects of the meds I was on, yet i was told by medical staff this wasn't the case.

Unfortunately there is so little in the public realm about post tx symptoms. This is why I search here and the Uk site to find out how others are coping. At least its reassuring to know you're not alone.

Its also great to read that people get better as time goes on- I noticed Jill said she was feeling a lot better now after 10 weeks (?) .

I did read a post (somewhere?) that suggested the immune system could still be in hyperdrive ( the DAAs work with/boost the immune system to fight the virus) and so after tx the immune system may still be in overdrive...who knows? Im not medically trained but it makes some sense?

Good luck to all of you still on tx and to those waiting on post tx tests to see if you have slayed the dragon. I'm EOT UND and have 7 weeks to go for the 12 wk post tx test. The side effects can be disheartening but eradicating the virus is the most important goal.
Best
Helena

DAAs work completely differently and attach a chemical mechanism directly to proteins that are created in the process of the replication of HCV. They, repeat DO NOT use the human immune system to do their work the way interferon does.

What is most likely happening to some of us is as our liver is now healing it is creating more immune proteins in a more efficient way than it has in years. Thus because our immune switches have been messed with and desensitised by HCV for decades we have sudden reactions to new natural defensive agents being efficiently created by out liver cells.

I would be very wary of some European health mags, some are slanted to and sponsored by the health supplement industry. Like watching Fox news and expecting to be informed by a Murdock run entity! Over the years I looked into a great many of the so called European natural cure claims and Asiatic medicine claims that all forms of hepatitis are easily cured with so called "natural products".

What is dangerous with these DAAs is the fact that they do effect our renal system and can increase or decrease cardiovascular functions, so they can be dangerous if the individual has impaired kidney and renal function or a compromised cardiovascular system and have trouble circulating blood in the liver and flushing the by products of dead liver cells, inert virus particles the left over chemicals that attached to the virus proteins and now inert hcv rna. This is all necessary to achieve the goal of stopping and killing off HCV in our bodies. And is exactly why these new drugs are called DIRECT ACTING antivirals.

HARVONI and these other new wonder drugs are not at all natural immune stimulating supplements that you would buy at the corner snake oil health product boutique! They were created because a genius by the name of Sofir had the insight and skill to see the potential of delivering antiviral compounds directly in liver cells like a magic bullet instead of treating the disease in the blood stream and with immune response reactions to interferons or blocking other important cell reproduction functions the way other antivirals like ribaviron does.

Eric

Katie · « **Reply #474 on:** April 04, 2016, 03:33:21 pm »

All I can say on any of this, is that everything is connected and anything introduced to the body will affect you in some way, whether it is positive or negative and it will affect different people differently depending on their overall health, genetics and tolerance. Time will balance things out, and the body is an amazing machine so never give up hope.

I am no longer a bio-hazard to others and I am grateful for that. I no longer have to fear of a painful death from Hepatitis C however who knows what the disease affected or what the Harvoni changed within me during the treatment.

I have been off the treatment for over a year and am still not feeling as good as I did before treatment but am incredibly better than I was a year ago and every week I feel a bit better along with very subtle improvements in things like skin, fingernails and hair quality. Prior to treatment I was actually worried about dementia, as I was so foggy and all of that disappeared while on treatment, so all and all I can handle being patient and letting my energy and endurance improve slowly.

Good luck to all and know your post treatment symptoms are real for you as they are real for me, but life is good and will continue to get better. Plus...Spring is here and it is a time of rejuvenation!

Katie

WholeFoods · « **Reply #475 on:** April 16, 2016, 12:36:30 pm »

Nicely put Katie. I was really concerned about my health status pre-treatment as well. While not close enough to retirement age, there were things going on at work that I was afraid I wouldn't be able to endure without being forced into early retirement and would not have had the support of my GI to go out on disability. Luckily I got the drug just in the nick of time and was able to tread water until I started feeling better. There were some very rough days and tense moments. It's amazing what life can put us through and what we can live through. My heart goes out to those ahead of us who had to endure the toxic treatments and lost their jobs, families and lives... it must have been devastating.

Katie · « **Reply #476 on:** April 16, 2016, 12:56:03 pm »

Hi everyone, I started a new topic but no one has responded. I know I don't have time to check out every single new topic, so thought I'd post it here as well. Please take the time to read and please respond if you have something to share. Thank you!

Onset of cardiac issues post treatment?

As many of you know my treatment wasn't bad at all...mostly really good as I got a "Harvoni High" My post treatment started out terrible and lasted for months and I still am not 100% after over a year or even feeling as good as I did before Harvoni. I do want to add that I have had many benefits as well, many of them subtle.

I had a physical today and they heard an aortic heart murmur. This is new for me and I will be having an ultrasound to see what is going on. Hopefully nothing to be concerned about.

My doctor knows I am on a forum and knows there are those of us with post side effects not addressed by Gilead. She asked me to check if anyone else is having any cardiac issues and she is going to try and research this as well but she appreciates information from patients for the real life experiences.

I do remember reading about palpitations and she would be interested in any heart related side effects.

My feeling stands, which is anytime we introduce something into our system and especially if we heal rapidly from a chronic illness, changing what our systems become accustomed to, there is a chance for not only positive effects but also negative effects and each person's system can be affected differently.

Thanks for helping and please respond if you have any information to share.

Katie

WholeFoods · « **Reply #477 on:** April 16, 2016, 07:34:26 pm »

Oh no Katie! I am so sorry to learn of this new DX. I looked for your new thread but could not find. Brain fog been bad for a few days. I had an EKG and chest X-ray 3 months post EOT because of excruciating fatigue. They found nothing. I went in for something unrelated a month ago, they always listen to my heart, but found nothing again. Thank you for sharing. I sincerely hope your prognosis is good. Keep us posted.

Katie · « **Reply #478 on:** April 16, 2016, 08:07:31 pm »

Thanks Kim. I'm not worried as many times murmurs aren't a big deal but since it is something new, it needs to be looked at. And it may not be related to Harvoni at all. Just have to play it by ear!

I just thought it was really good for the doctor to ask me to check on the forum. I liked that! That tells me there could possibly be more to this treatment than originally was thought. Hope for everyone it is all temporary and not serious.

Hope everyone is enjoying the weekend!

Katie

laura girl · « **Reply #479 on:** April 19, 2016, 08:56:53 am »

Hello All! I have been on and off this forum for many years. Finished 24 weeks of Harvoni in Dec.1015. Undetected (and grateful) and feeling "not good enough". Checked this forum and read about post TX fatigue, salt craving, digestive issues, body aches, headaches, etc. Wow! Am I relieved it's not just me. I have been trying to fix all these things and I realize that time may be the solution. I read the post that said that after 9 mos. they felt better. I am going to slow down and let my body heal. Was trying to do too much, too soon with unrealistic expectations. Hey - who knew? No one. We are the first group!
BTW. my last labs were perfect except for low chloride. Gee...what does that mean? Google it and see the relation to salt cravings!
Thank you moderators for keeping this resource available.

KimInTheForest · « **Reply #480 on:** April 19, 2016, 04:05:53 pm »

Quote from: laura girl on April 19, 2016, 08:56:53 am

Hello All! I have been on and off this forum for many years. Finished 24 weeks of Harvoni in Dec.1015. Undetected (and grateful) and feeling "not good enough". Checked this forum and read about post TX fatigue, salt craving, digestive issues, body aches, headaches, etc. Wow! Am I relieved it's not just me. I have been trying to fix all these things and I realize that time may be the solution. I read the post that said that after 9 mos. they felt better. I am going to slow down and let my body heal. Was trying to do too much, too soon with unrealistic expectations. Hey - who knew? No one. We are the first group!
BTW. my last labs were perfect except for low chloride. Gee...what does that mean? Google it and see the relation to salt cravings!
Thank you moderators for keeping this resource available.

Welcome laura girl!

I am one example of a person who had a LOT of problems post-treatment that I did not have during treatment or prior to treatment. I am now 9 months post-treatment, and pretty much all those problems have disappeared (except for my anemia and extreme low iron, which I cannot seem to eliminate). But that is how long it took me. I do believe that time is the answer for getting our bodies back in balance after treatment and after a lifetime of Hep C. Time and reducing/removing whatever stressors and burdens on our body that we can.

best,
kim

jakas · « **Reply #481 on:** April 20, 2016, 07:18:26 am »

Finished mine 6 weeks back and the right flank pain is back and odd bloating. It was all gone while on treatment

Philadelphia · « **Reply #482 on:** April 20, 2016, 07:58:22 am »

If you've hit SVR4, it is HIGHLY unlikely that you will relapse. Keep the faith.

jakas · « **Reply #483 on:** April 20, 2016, 04:56:33 pm »

i hope so

Katie · « **Reply #484 on:** April 20, 2016, 05:16:30 pm »

Congratulations Jakas! Looks like you beat the dragon. Hopefully any issues you have post treatment will leave quickly. Everyone is a bit different and with some it takes longer but by what people post and my personal experience, be patient and be good to yourself and your body will adjust and improve little by little. For others, they feel great immediately. Having summer is always a boost.

Welcome to the SVR Club and rejoyce! I LOVE no longer being a bio-hazard!

Katie

Mugwump · « **Reply #485 on:** April 20, 2016, 06:13:38 pm »

jakas I had the same problem until I reached SVR 12 and then finally 24. The pressure issues are because of an enlarged liver. Strange but for over 15 years I had increases in pain in the hepatic region and then just as suddenly if I fluffed, presto the pain instantly went away.

I still have this issue 1 year post treatment so I guess having a jumbo sized liver takes time to get over. The liver itself does not create the pain it is the fact that it irritates the membrane around the space and this membrane is chocked full of nerves.

By and large the amount of bloat discomfort and biliousness has decreased noticeably in the last 3 to 4 months. I was at 26 kpg on a fibroscan in 2014 so I am not counting on being completely free from enlargement of the liver and associated discomforts. But only a year ago I had problems with bending over and having the membrane around the liver space get pinched between my ribs. So I had to be very careful not to herniate. It was really that bad, I had to relax, lay down and manipulate the membrane carefully until it would go back into the right upper quadrant. On several occasions I almost went into emerge because of the danger of having damage done. But touch wood those days are finally over

All the best Jakas and congratulations on reaching the first hurdle of SVR the rest are just around the corner and each time it feels like a kiss from the angels.

Eric

jakas · « **Reply #486 on:** April 21, 2016, 01:32:15 am »

Thanks much guys I learn something new each day

morab · « **Reply #487 on:** April 22, 2016, 01:36:58 pm »

I am no Dr. but I have had fantastic results by taking Diatomacious Earth at 1 Tblsp a day in water. It not will remove toxins from your body, help with joint and pain issues, clean your gut among other things. You can order the food grade. It is basically silica which is now depleted in the food we eat and has so many benefits.
google it and see what you think.
I hope this might help those suffering from after effects of Harvoni.

morab · « **Reply #488 on:** April 22, 2016, 01:47:36 pm »

I also want to add another thing I plan to do when I finish treatment Harvoni, I am on day 5 of treatment and had to go off my herbal supplements. Natural Wellness sells the absolute best Milk Thistle and liver products available. My Dr. was sceptical until he saw my lab results change for the better when I was taking Ultra Thistle. It will actually help to heal your liver.
When I used cheaper brands my liver enzymes were higher, my GP now believes in the products made by Natural Wellness. I truly believe that is why I have fewer liver problems than many I am seeing posted.
Good luck to you all.
Just a suggestion of something that has worked for me and that I will return to the day I stop the Harvoni treatment

Katie · « **Reply #489 on:** April 22, 2016, 02:49:20 pm »

Just wanted everyone to know, I did get my requested 12 month post treatment blood work done when I had an extensive panel completed. Got the results and every single test was perfect from thyroid to cholesterol from liver panels to tumor marker and of course my VL is UNDETECTED.

Here is a wish for all of you to conquer the BEAST and have a healthy happy life.

Enjoy your summer and the very best to all of you!

Katie

KimInTheForest · « **Reply #490 on:** April 22, 2016, 04:02:27 pm »

Quote from: Katie on April 22, 2016, 02:49:20 pm

Just wanted everyone to know, I did get my requested 12 month post treatment blood work done when I had an extensive panel completed. Got the results and every single test was perfect from thyroid to cholesterol from liver panels to tumor marker and of course my VL is UNDETECTED.

Here is a wish for all of you to conquer the BEAST and have a healthy happy life.

Enjoy your summer and the very best to all of you!

Katie

Great news, Katie! Congrats.

kim

jakas · « **Reply #491 on:** April 23, 2016, 04:48:16 am »

Great result. Congrats

kimharvest · « **Reply #492 on:** April 28, 2016, 02:13:34 pm »

I, for one, am having heart problems aggravated since going on the cure. My blood pressure has been too high for months now. I have no resting rate, the bottom number is too high, giving me headaches and stuck in fight or flight. Doubling my meds and starting beta blockers have done nothing. I am wearing down. I also had blood work done and asked to be tested for the Epstein Barr Virus and it came out positive for mono! I ended the riba/sov in May 05 and went into horrid fatigue. Within months the EBV had taken over my body. EBV is interlocked with hepc and thyroid problems and I just can't help wondering, how the hell I went through that poisoning for 4 months and that left the door open for EBV? How did that happen? How many of us are EBV drenched without knowing it? It can go chronic, so it is no joke. Also extreme problems with arthritis, joints are visibly growing, and broke out with granuloma annarlare, horrid expanding rings of bumps under the skin, an inflammatory autoimmune problem. I feel almost as bad as I did before the cure; and I was at the tail end of that.

KimInTheForest · « **Reply #493 on:** April 28, 2016, 04:22:03 pm »

Is there any treatment for Epstein-Barr virus, kimharvest?

kim

Videobycarol · « **Reply #494 on:** April 28, 2016, 08:54:03 pm »

Hello All. Just got my 12 weeks post treatment labs back and I am freaking undectable! I am starting to finally feel better also. I've had a nasty sinus infection ever since I finished harvoni. I was cured of hep c faster than a sinus infection. Go figure. I can only beat one problem at a time. Hugs, Carol

Katie · « **Reply #495 on:** April 28, 2016, 09:32:46 pm »

Congratulations Carol. Feels good, doesn't it. You will continue to see subtle improvements and hopefully get rid of the sinus infection. They can be difficult and are miserable, especially in the summer.

Be good to yourself and enjoy your life free of Hep C!

Katie

Xavier Vazquez · « **Reply #496 on:** May 04, 2016, 09:27:07 pm »

I just finished 1 week ago 12 weeks generic harvoni treatment and feel very fatigued! Bones, muscles and joints pain in all my body, like when you're about to get sick of a cold flu. I had also blurry vision and wanted to stay in bed all time. After eating symptons get worst, especially after 2 pm and after 9 pm. I just did my liver function test and all enzymes are in normal ranges and virus is undetectable!
I feel "comfortable" to read that I'm not the only one experiencing these. This drug is very toxic in some way. I'm now taking vitamins and a liver detox herb formula and its helping. Lots of water too. We haven't had finished our recovery process and it will take more weeks to finally achieve a healthy balance.... Best wishes to all

KimInTheForest · « **Reply #497 on:** May 04, 2016, 09:30:56 pm »

Welcome to the forums, Xavier! And congrats on being undetected at End of Treatment!!

Yes, this 'Post-Treatment Syndrome' - whatever it is exactly - does seem to be a thing for some of us. Good luck, and I hope you recover soon!

kim

Hepsub · « **Reply #498 on:** May 06, 2016, 04:42:11 pm »

Hey Kim, any news on your new theory you presented to the doc?

KimInTheForest · « **Reply #499 on:** May 06, 2016, 04:56:44 pm »

Quote from: Hepsub on May 06, 2016, 04:42:11 pm

Hey Kim, any news on your new theory you presented to the doc?

No, because that doctor appointment got cancelled (for 3rd time). My doctor fell 2 weeks ago and it's day by day whether she can make it in to office. So I am scheduled to see her and float my theory about my post treatment malaise next week. But in meantime. I have just emailed the liver doctor who oversaw the clinical trial I was on, and I ran down my theory and symptoms to him in details. And I may try to contact the previous local liver specialist I was seeing. Might as well ask all the experts I can! Thanks for asking.

There is no question I am quite sick and screwed up since finishing treatment. My latest labs came back with these comments from pathologist: “Pancytopenia with critical neutropenia. Consider cytotoxic therapy, immune process, hypersplenism or bone marrow disorder. A few tear-drop cells, as noted previously. Suggest close follow-up +/- hematology consult if indicated.”

Pancytopenia had been noted in previous labs as well. There is no doubt in my mind this health crisis going on more than nine months now is tied to treatment, either directly or indirectly. Last's night's fever was 38.8 C (101.8 F). Typical.

Will keep y'all posted.

kim

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