Author Topic: Harvoni 24 week EOT results check in. (Read 193399 times)

gnatcatcher · « **Reply #200 on:** April 02, 2016, 08:09:43 am »

Quote from: shawreb2015 on April 02, 2016, 12:54:48 am

It was very heartening to hear about your success with Harvoni. I started on Harvoni 8 days ago and I am still having some minor side effects: mild headaches some days, light-headedness, some chills and fevers at night, but overall it is not bad. I waited for almost a year to get approved for the Harvoni and I am hoping that it works well for me. I have COPD and Rheumatoid arthritis, so I think some of the side effects may be from that as opposed to Harvoni. I admit that I am having a hard time drinking a lot of water, but am going to stick with it. I was starting to feel tired and fatigued before the Harvoni due to Hep C being in my body for many, many years unbeknownst to me. Thank God I finally got approved. Thanks for the upbeat prognosis and I hope I have the same luck.

Glad you joined us, shawreb. It is possible your RA is an "extrahepatic manifestation" (EHM) of the Hep C. Once a person cures the HCV, sometimes other problems lessen or go away.

As for fluids, ditto what Lynn said. If your urine is light yellow or clear, you're getting adequate fluid. Taking in a little more than that may lessen the headaches, but there's no need to consume vast quantities. Although every body is different, a 160# person drinking around 80 ounces (10 cups) of total fluid/day seems to suit Harvoni.

Best wishes,

Gnatty

2Thrive · « **Reply #201 on:** April 15, 2016, 12:46:17 am »

Hi

As another 24 week Harvoni victor I am proud to be able to post here and to join the ranks of all of us who have fought the fight. It has been a long journey and many times I read these posts and took encouragement. I have been touched, enlightened, encouraged and inspired.

We know we embarked on a journey that was not well defined, and that we are the "final trial". It has been gut wrenching, exhilarating, scary, exhausting,tearful and fearful, but yet a joyful ride. Despite my fights with the insurance providers and days of headaches, fatigue and mental daze, I still view myself as fortunate. I have been blessed by these forums, family, friends, a network of traditional and non traditional Health Practioners. I have been under-girded in prayer by many, have trusted my instinct and relied on my Creator for guidance.

After 8 weeks I was virus free and couldn't believe it. When I stopped treatment after 6 months of taking it, I felt lost without "my friend" Harvoni. I knew as long as I took the pill I was ok, but ending treatment in January I entered into the "unknown". I was scared and shaken. Now, 12 weeks after treatment, I am still virus free!! My once F4 liver has normal enzymes! That tells me it is healing. I hope when the next 12 weeks are up that I will not only be telling you I have a SVR, but I believe I will be telling you about how my liver has regenerated.

Be of good faith, my fellow journeyers! Miracles DO happen!

And as my moniker indicates....my prayer for all of you is......

2Thrive

HCV since 02/23/1984
GT 1b
03/2002 to 10/2002 Pegintron/Riboviron -Failed
07/18/15 VL 7,100,000
07/18/15 FibroScan F4
07/18/15 Necroinflam.act.grade A3
07/18/15 ALT 196 [ref 6 -29] AST 149 [10-35]
07/31/15 began Harvoni - 24 Weeks
08/21/15 VL 1,520,000 ALT 39 AST 34
09/18/15 VL Undetected!!! ALT 27 AST 31
12/23/15 VL Undetected!!! [SVR12] ALT 30 AST 26
01/13/16 EOT
04/13/16 - 12 weeks post txt: VL Undetected!! ALT & AST - normal!!

Patience · « **Reply #202 on:** April 15, 2016, 07:07:46 am »

Well said, and thrive you will! As time passes the freedom from that loathsome shadow that became part of my every waking moment is more and more amazing. I am beyond grateful for the removal of that burden!

2Thrive · « **Reply #203 on:** April 15, 2016, 07:59:11 am »

Patience,

Thank you so much! It is wonderful to not be in the shadow but in the light! Grateful indeed!

2Thrive

slats1056 · « **Reply #204 on:** April 15, 2016, 12:01:34 pm »

Well , the results are in. The nurses at My Drs.' office know that I have been waiting for the results and have been worried about Me , so they called Me to tell Me
that I have achieved SVR24!

Very unusual in this day and time that the office personell would have that kind of compassion, but it is very reassuring to say the least.

I need to buy them lunch again to show them how much I appreciate their concern as they do not know Me from Adam!

Still have to go in Monday for consultation with the Dr. on the rest of the Lab results and pick up My copy of SVR24 suitable for framing

Here is hoping all is well out there with everyone in Heplandia. Everybody join in the Happy Heppers Conga line one more time! Here We go

PEOPLE THINK I AM CRAZY

BUT I THINK OF MYSELF AS NORMAL WITH A TWIST OF AWESOME

gnatcatcher · « **Reply #205 on:** April 15, 2016, 12:34:21 pm »

Yessss, Tommy! YOU AND YOUR LIVER are
AWESOME!

slats1056 · « **Reply #206 on:** April 15, 2016, 12:54:17 pm »

Thank You My Dear!! Right back at You!

beto · « **Reply #207 on:** April 15, 2016, 01:21:43 pm »

Tommy

You've had us all on the edge of our seats dalburnit! Whooopiee! So glad. Now you need to go fishin' or something. Chill out. I bet you your liver scan in the future turn out incredible and I want to hear about it.

slats1056 · « **Reply #208 on:** April 15, 2016, 01:27:11 pm »

I need to check with My Gastro Dr. about his take on Fibroscan/Fibrosure testing when I go in on Monday.

FutureThinker · « **Reply #209 on:** April 15, 2016, 03:24:13 pm »

Slats1056, THE CONGA LINE IS IN GEAR!!!!!! So very happy to hear your news! Have an absolutely fantastic weekend, you deserve it! The future is bright -- FT

Philadelphia · « **Reply #210 on:** April 15, 2016, 07:01:53 pm »

I said it in another thread but it bears repeating ... Congo-rats Tommy!

slats1056 · « **Reply #211 on:** April 15, 2016, 11:21:37 pm »

Thanx All, Beto , FutureThinker , and Philly!

Beto , I too, am interested as to how the ol' liver will respond!

FutureThinker , The Future is so bright , We gotta wear shades!

Philly, That is a good one even foR Me! Conga-Rats of Heplandia Rejoice!

TAKING NAPS SOUNDS SO CHILDISH! I PREFER TO CALL THEM HORIZONTAL LIFE PAUSE!

WholeFoods · « **Reply #212 on:** April 16, 2016, 12:25:56 pm »

Quote from: 2Thrive on April 15, 2016, 12:46:17 am

Hi

As another 24 week Harvoni victor I am proud to be able to post here and to join the ranks of all of us who have fought the fight. It has been a long journey and many times I read these posts and took encouragement. I have been touched, enlightened, encouraged and inspired.

We know we embarked on a journey that was not well defined, and that we are the "final trial". It has been gut wrenching, exhilarating, scary, exhausting,tearful and fearful, but yet a joyful ride. Despite my fights with the insurance providers and days of headaches, fatigue and mental daze, I still view myself as fortunate. I have been blessed by these forums, family, friends, a network of traditional and non traditional Health Practioners. I have been under-girded in prayer by many, have trusted my instinct and relied on my Creator for guidance.

After 8 weeks I was virus free and couldn't believe it. When I stopped treatment after 6 months of taking it, I felt lost without "my friend" Harvoni. I knew as long as I took the pill I was ok, but ending treatment in January I entered into the "unknown". I was scared and shaken. Now, 12 weeks after treatment, I am still virus free!! My once F4 liver has normal enzymes! That tells me it is healing. I hope when the next 12 weeks are up that I will not only be telling you I have a SVR, but I believe I will be telling you about how my liver has regenerated.

Be of good faith, my fellow journeyers! Miracles DO happen!

And as my moniker indicates....my prayer for all of you is......

2Thrive

HCV since 02/23/1984
GT 1b
03/2002 to 10/2002 Pegintron/Riboviron -Failed
07/18/15 VL 7,100,000
07/18/15 FibroScan F4
07/18/15 Necroinflam.act.grade A3
07/18/15 ALT 196 [ref 6 -29] AST 149 [10-35]
07/31/15 began Harvoni - 24 Weeks
08/21/15 VL 1,520,000 ALT 39 AST 34
09/18/15 VL Undetected!!! ALT 27 AST 31
12/23/15 VL Undetected!!! [SVR12] ALT 30 AST 26
01/13/16 EOT
04/13/16 - 12 weeks post txt: VL Undetected!! ALT & AST - normal!!

I recall that "losing a friend" feeling after EOT, for the same reasons you stated. As long as you're on it, you feel safe somehow. The waiting is the hardest part. I always tried to focus on what I knew already and that is that so many people were going undetected and SVR. That gave me little reason to fear it wouldn't work on me. For anyone on it now and going forward, nothing to fear but fear itself. This is truly a miracle drug, although I still would like to know what causes the lingering bouts of fatigue. While I dislike it, I'm still pretty stoked that I don't have hepc anymore. :-)

beto · « **Reply #213 on:** April 16, 2016, 03:13:57 pm »

hear, hear!! 2thrive and WF,

Congrats 2thrive on svr24. That was a scary one for me. Like, "I have come this far, wouldn't be just my luck" etc. I forget sometimes the years leading up to the point of being medically cured. Indeed a long haul, and many did not make it to the new drugs. F4 was a tough pill, but all the years living with uncertainty, stigma, crazy symptoms, isolation even with support and lots of fear waiting and waiting. My cirrhosis appears to be reversing (if the scans were true) however, had the cure come a few more years down the line...might have I reached that damage threshold of little or no return? Lucky, yes.

peace all

chino1969 · « **Reply #214 on:** April 26, 2016, 01:06:41 pm »

Well, it is now going on 34 weeks EOT after a 24 week course of Harvoni. Iwas clear of Hep C at 24 weeks. I had my local GI perform an endoscopy as a prerequisite for my Fibrosis study at the U of P. My local GI referred me to another renowned doc at Penn for a follow up endoscopy. I'll be getting that done early June followed by another consult along with a Fibroscan and the start of the study. I'll keep everyone posted.

Lynn K · « **Reply #215 on:** April 26, 2016, 01:42:23 pm »

Hi Chino

Did you have a fibroscan before treatment and have you had one post? I am very interested in this study you are involved with.

My pretreatment fibroscan Oct 14 was 27 and my post treatment almost a year after EOT in Mar 15 my score was 33 but I don't feel that was a significant difference I don't think fibroscan is super precise. I assume my cirrhosis at one year post is essentially unchanged.

Is there any medication in this study or are they just tracking patients with cirrhosis post SVR?

Best of luck

Bob V · « **Reply #216 on:** April 27, 2016, 02:56:30 pm »

Hi everyone
It's been a long time since I've posted but I do check in from time to time. Most of the old names are gone but Lynn and Eric good to see you guys still posting.

Anyway I just got my 58wk post tx lab results, UND!

KimInTheForest · « **Reply #217 on:** April 27, 2016, 03:20:07 pm »

Quote from: Bob V on April 27, 2016, 02:56:30 pm

It's been a long time since I've posted but I do check in from time to time. Most of the old names are gone but Lynn and Eric good to see you guys still posting.

Anyway I just got my 58wk post tx lab results, UND!

Congrats Bob! I look forward to that day myself.

kim

Lynn K · « **Reply #218 on:** April 27, 2016, 03:25:19 pm »

Hi Bob

Good to hear from you my fellow interferon survivor and Harvoni dragon slayer

Congrats on the 1 year plus!

Bob V · « **Reply #219 on:** April 27, 2016, 03:29:40 pm »

Thanks Kim

I read your story, cool you got on the trial.

Good luck <3

Bob V · « **Reply #220 on:** April 27, 2016, 03:31:24 pm »

Thanks Lynn

FutureThinker · « **Reply #221 on:** April 29, 2016, 11:34:30 am »

Hi Bob V and CONGRATS!!!!! I am 9.5 wks into my Harvoni treatment and saw my doctor yesterday following my UD (!) 8 wk lab report. I have a question: Are you in a trial to be getting your RNA tested as far out as 58 wks? When I inquired yesterday re: 24 EOT labs, I was told maybe, or my GP could follow up w/ that lab. What are others hearing regarding how far out RNA will be tested?

Again, so very glad to hear your news! Thanks, FT

Lynn K · « **Reply #222 on:** April 29, 2016, 01:57:56 pm »

Hi FT

I think a lot is on you prior treatment history and liver damage. I was tested at 24 weeks post and I asked to test at my liver specialist annual (44 weeks post) and they said ok. But as a patient with cirrhosis and 3 time interferon null responder and Sovaldi Olysio relapse you can see why.

I feel like a believer now after a year

FutureThinker · « **Reply #223 on:** April 29, 2016, 03:11:33 pm »

Thanks Lynn, I can see how each person's particular medical condition will mediate that decision. But I think for my own peace of mind, I'm probably going to want someone to test at 24EOT and 1 year, which I think is understandable after having such a silent disease for decades. And, as research uncovers more information about these DAAs, that will also play into these decisions.

Would like to know how others doctors are handling this decision. FT

Lynn K · « **Reply #224 on:** April 29, 2016, 03:27:05 pm »

Sure I totally understand the need for peace of mind. Who knows maybe I will have one more test say year five post just to put one last fork in it to know I am done with hep c

Patience · « **Reply #225 on:** April 29, 2016, 03:54:09 pm »

My doc did 12 and 24 weeks post and will do one more at one year. Then it's fork-sticking time.

Bob V · « **Reply #226 on:** April 29, 2016, 04:04:03 pm »

Hi Future Thinker
First thanks and I hope you remain UND.

I did the original Interferon tx x2 back in the 90’s, only someone that went through his can relate( LynnK), think chemo…..the stuff was poison to me. Since then I refused and my doc at the time agreed I wouldn’t do any treatment with Interferon in it. I felt fine, so I just got on with my life. I always knew and kind of expected to have an issue at some point.

I got a new GI doc a couple of years ago and he couldn’t understand why I refused to try any of the newer treatments, all had “better” Interferon and started pushing me on it. I said to him and his nurse “listen to me doc if you told me I would die in 3 month if I didn’t start taking Interferon I still wouldn’t take it” His nurse stopped typing and just looked up and he took a few seconds to respond. Then he told me about S&O, I told him I would do my research and get back to him. I didn’t like the side effects of S&O but lucky for me Harvoni got FDA approval that Oct. I was in his office the next day and said I want Harvoni, to be honest I don’t think he knew it was approved already. We started the approval process and lucky for me several weeks later I was approved.

I always looked at my treatment as a collaboration between my doc and me. If he wasn’t ok with this I would of found a new doc. I guess I should add I’m an RN so I know the system……You have to understand all of us on the forum that fall/winter were the first real world “guinea pigs” on Harvoni. There was very little to no info on Harvoni so we relied on each other for info and support. The forum had/has some very intelligent people that keep up to date on all that’s HCV. When the new protocols for DAA’s came out, which I got off the forum I was emailing them to my doc, that included labs. My doc only wanted to do EOT and 24wks post tx. Like everyone I wanted to know if Harvoni was doing its thing so I told him I wanted 5wk lab since the new info said most people were UND by week 4, I was <15. He agreed to do labs weeks 5, 8, EOT, post 12, 24.
With all the newer info this is total overkill. I think I’d just do post 12 and 24 now. My doc was old school so he wanted 24 and 52, he didn’t think 12 was considered a cure. I did 58 because I was too lazy to get it done and my GI doc appointment isn’t until June.

Sorry this is so long but a lots has changed since Oct 2014.

chummy1 · « **Reply #227 on:** May 11, 2016, 04:04:39 pm »

I got my 24 week post treatment lab result yesterday. Complete SVR and all results are normal. Hooray, right? Not so fast. Prior to treatment I felt normal.

Since starting treatment and importantly since stopping treatment, I feel poorly. My list of problems include fatigue, brain fog, hot flashes, losing weight involuntarily (20lbs starting from 190), just not feeling good. I was high functioning prior to treatment. Now I struggle to be effective as a family member and at work. This is difficult!

KimInTheForest · « **Reply #228 on:** May 11, 2016, 04:20:56 pm »

Quote from: chummy1 on May 11, 2016, 04:04:39 pm

I got my 24 week post treatment lab result yesterday. Complete SVR and all results are normal. Hooray, right? Not so fast. Prior to treatment I felt normal.

Since starting treatment and importantly since stopping treatment, I feel poorly. My list of problems include fatigue, brain fog, hot flashes, losing weight involuntarily (20lbs starting from 190), just not feeling good. I was high functioning prior to treatment. Now I struggle to be effective as a family member and at work. This is difficult!

Congrats on your SVR24, Chummy! At least there is some good news. As for your post-treatment problems, quite a number of us are also in that boat. My life is pretty much destroyed at this point, and I am 9.5 months post-treatment. I was fine and healthy and happy with my life and earning a living when I started treatment 1 year ago. Now many days I cannot make it out of the house. Some days I can't get out of bed. Doctors have been looking at my situation and running blood tests. More doctor appointments tomorrow. Sometimes this malaise wanes enough that I can get a few things done. But basically, I have no life, no health, and at present no prospect of hope on the horizon. Sorry to be such a downer people, but it's where I am at.

kim

chummy1 · « **Reply #229 on:** May 11, 2016, 04:24:28 pm »

Kim, I'm sorry to hear that. Has you condition been getting worse as time goes by or did it start all at once and stay that way? I'm functioning, just that I have some good days and some bad. None of my good days are what they use to be though.

KimInTheForest · « **Reply #230 on:** May 11, 2016, 04:31:44 pm »

Quote from: chummy1 on May 11, 2016, 04:24:28 pm

Kim, I'm sorry to hear that. Has you condition been getting worse as time goes by or did it start all at once and stay that way? I'm functioning, just that I have some good days and some bad. None of my good days are what they use to be though.

It feels worse now than at beginning. But I think that is just because I am getting very ground-down and despairing by it all. I was bedridden for my first 2 months post-treatment, and that was pretty instantaneous. I had been on my feet and going about my business during treatment. So I am probably not actually worse now. Everybody's "symptoms" during their Post-Treatment Malaise/Syndrome are different. And nobody seems to have my symptom cluster at all, which is:

• fever (100-102.5 F)
• drenching night sweats
• enlarged lymph nodes
• extreme fatigue
• persistent dry cough
• shortness of breath
• iron-deficient anemia
• low hemoglobin
• low or borderline red blood cells
• low platelets and White Blood cells
• low neutrophils (critically low at present)

Here are a couple of other forum threads where post treatment health problems are being discussed:

http://forums.hepmag.com/index.php?topic=4115.0

http://forums.hepmag.com/index.php?topic=2053.0

kim

Bob V · « **Reply #231 on:** May 11, 2016, 04:44:07 pm »

KimInTheForest and chummy1

I hope things improve for you guys.

Before Harvoni I felt fine but on treatment I could sleep anytime I wanted. I didn't work so it wasn't an issue. Post tx it took several months to get my energy level back to pre tx levels.
Good luck.

Bob V · « **Reply #232 on:** May 11, 2016, 04:55:44 pm »

KimInTheForest

Wow that sucks, sorry.

FutureThinker · « **Reply #233 on:** May 11, 2016, 05:18:52 pm »

Hi Bob V -- I, too, have a healthcare background and completely agree w/ the "collaboration" aspect of working with our physicians. We, the patients, know best how we feel and there needs to be ample time for us to adequately communicate this to a doctor who is attentively listening --- not typing away on the computer, or reading what's on the computer. The computers are not going to go away, but there needs to be some human, eye-to-eye dialogue at these appointments. I am repeatedly encouraging fellow forum members to not be afraid to ask any and all questions until they understand whatever the subject is regarding their health.

I am concerned for Kim and encouraging her to get some "new eyes" on her situation if her current medical docs don't have a satisfactory plan. It's never easy going thru all the paperwork and wait to get to a new doctor(s), but it can be a life-saving action.

So glad you have made SVR -- I think 2016 is going to have a very big class of graduates! FT

Mugwump · « **Reply #234 on:** May 11, 2016, 07:22:32 pm »

So bummed seeing post treatment malaise for many of us warriors! We certainly deserve a better break. It does seem that this alien parasite virus does things to some of us if we dare remove it. We seem to be suddenly suffering all sorts of symptoms which are akin to immunity reactions to what can be quite serious diseases.

I am not in great condition yet but am slowly getting a better handle on my physical life one year after treatment.

For one I suffer horribly from exposure to every day allergens now but it comes and goes. We have 3 cats now so the protein Feld d 1 in dander might have something to do with the fact that I feel like I live in a field of hay full of goldenrod being harvested in a breeze which is pointed straight at me!

I don't experience any other really serious problems, my digestion, CV recovery rate along with key circulation to my limbs and mental acuity are all much better than they were pre treatment.

Overall for 63, I am typical of an overweight individual who craves exercise, healthy diet and the habits of a saint but tends to not listen to the best advice that I preach.

Mia culpa as I gulpa down a my chocolate milk shake with abandon and piggy out ona spumoni!

But back to the point, clearly those who suffer this should be studied more closely post treatment and listened to by the doctors! It could very well be that HCV has replaced certain key functions in the hepatocyte and even enhanced some in those who had the disease long term. The give away is that some who have been cured by a DAA treatment have suddenly developed HCC, quite possibly in response to having their immune system change overnight by removing the virus.

I am not talking about just Harvoni, I am considering here all DAAs that work to quickly remove the virus might affect some of us adversely. I surmise here that if our immune system does not adjust quickly to the changes in liver function, which is predominantly a massive restructure of the hepatocyte cell mass. We might be put at greater risk of attack by common immune reactions. In addition to this a more serious problem with our interferon triggered immunity reactions might not be able to keep up with some minor incidents of tumor cell growth within the liver.

I truly hope the reason why some of us are going through this is not what I have envisioned but some of us having compromised or overstimulated incorrect immune system reactions to everyday allergens, malaises and irritants post treatment is the only answer that I can think of for this problem.

Only time will tell what is really going on here, unfortunately it seems that none of the clinicians and scientists could give a shit about people who their treatments cured yet. We are no longer interesting to them we are no longer patients.

I hope there is a more simple answer than the one I am suggesting I am sure as more and more people show the same problems we will come under scrutiny of the drug companies and they will peddle some pills to get over the post HCV treatment sickness. Gilead or some cuttlefish-eyed investor from Bristol-Myers Squibb might even jump on it and buy it out for a few billion if some brilliant mind comes up with a pill or two in answer to the problems we face.

chummy1 · « **Reply #235 on:** May 11, 2016, 07:36:11 pm »

I'm quite certain there will not be a simple answer. I am making an appointment with my doc to start all of the tests to rule out this and that. Some of the symptoms could be from serious conditions. There's no point in getting worked up until, for me anyway, it can be narrowed to something conclusive. That is my hope anyway, that the cause can be identified. There have been so many stories of nothing being able to be diagnosed definitively, so people are slapped wit a fuzzy yet questionable (insert name here) syndrome. I can live with the way things are, but not happily. Time will tell.

beto · « **Reply #236 on:** May 11, 2016, 08:00:09 pm »

Hey all,

I feel like I have been chasing my tail on this one. Post treatment woes, have taken up a whole bunch of our posting time. This in and of itself indicates that, yea something is going on here. I agree with chummy, that the answers will not be simple when and if they come; and I also am in Mugwup's camp on the hyper immune idea.

Truly, we the guinea pigs are the ones that are having to show patience in this process where nobody knows what may come down the line. Perhaps, it will all be moot before we get the answers because everyone eventually balances out.

For me, there have been little weird health surprises. Things I have not experienced before treatment or, during. Example; after a period most recently of sustained "work" stress I developed very tender and inflamed neck lymph issues. Yes...stress...a virus...CMV/EBV maybe. However, I have not had the experience in my lifetime of sore swollen lymph nodes for six days without it turning into a cold or flu and I usually hardly ever have sore lymph nodes.

My point is that most of the stuff going on seems to be immune over reactions. Said it before and I will say it again...decades living with a prolific virus (trillion copies a day) then dead in a few weeks. Yes Mugwup...might be too quick. for now I am content to suppose that the real recovery begins at EOT and for some, it might be longer than we hoped.

As for the antiviral causing damage...well...that could very well be. Question is, who is going to study this? Or rather...who has the incentive to foot the bill for this study?

slats1056 · « **Reply #237 on:** May 11, 2016, 11:25:55 pm »

Sounds to Me like Big Pharma needs to be held accountable for some post Tx. follow ups and health studies. It would be to much to ask for them to do it voluntarily. Will probably wind up in court the way it is going. Lots more info. needs to be forthcoming from them. I am sure there is info. that has not been released or has been suppressed from the general public! Unfortunately, in this day and time it behooves them to cover their asses at our expense. All the while , they are raking in the cash for the corporation. Hey , I wonder what it would cost to get some shares of Gilead?

Lynn K · « **Reply #238 on:** May 12, 2016, 01:20:32 am »

Just to chime in I feel same as before treatment. I am 58 with cirrhosis. I could and probably should get some exercise and eat better. As my BMI is 30.1 But that being said I feel reasonably well work full time and do my yard work around the house as needed.

I get a little tired from time to time but see above

Philadelphia · « **Reply #239 on:** May 12, 2016, 08:47:59 am »

I'm like Lynn. 57, cirrhosis, had the virus for a long time. Now clear, I have the usual aches and pains of being close to 60 and my eyesight ain't what it used to be. I don't really have any visible signs of sx of treatment. I have some issues with my platelet count and my INR, but I haven't had a blood test for a while.

But I do feel pretty good and I certainly feel better than I did before I started treatment. I don't say this to belittle anyone having issues. I know there are some people doing it really tough. But I think it's important to give a good news story as well.

beto · « **Reply #240 on:** May 12, 2016, 11:11:31 am »

Yes Philly,

The good news needs to come forth along with those more trial-some accounts. I do not believe that anyone should feel bad about reporting the down issues on this forum and should not be overly concerned about bringing everyone down with them. We can take it after all we have been through and keeping those afloat that bear a greater burden than most; we gladly support. The information is important no matter which way it swings.

I love hearing about folks that are feeling fantastic or having improvements, especially when I am nursing temporary wounds. I encourage more of that conversation coming out of the EOT camp. In the beginning it did not matter if we were having issues as long as the undetected news turned up for us or our comrades. The frustration is palpable for anyone past the 6 month cured mark that still must embrace complications. I think a lot of those folks just stop posting.

All said and done, we are all blessed to have a social media outlet that allows us to cheer, gripe, postulate, joke and even politic the hands that offered cure (we just did not know of the caveats, but if we had we would have marched toward the chance of cure without a second thought).

I think we are at the point where we can all agree that healing and recovery are different for all and that being cured does not equal healed.

FutureThinker · « **Reply #241 on:** May 12, 2016, 12:02:27 pm »

This is an insignificant question with all the other issues being discussed on this thread right now, but I've put out the question elsewhere on this forum with minimal responses re: decreased tartar buildup during &/or after treatment. What has your experience been? Thanks, FT

Determined · « **Reply #242 on:** May 12, 2016, 12:17:26 pm »

AMEN! I came over to this forum because I needed some hope. I agree that we need the support for our difficulties, but was starting to wonder if anybody feels good after treatment. Very worried near EOT because I am desperate to find my old self. Hard truths are better than no truths, but let's hear it all. Many thanks!

chummy1 · « **Reply #243 on:** May 12, 2016, 12:25:24 pm »

My guess is most people feel normal after treatment. They get cured and move on. No reason to come to forums like this anymore. The odds are in your favor that you will complete the regimen, clear the virus and then lead a normal life.

Bob V · « **Reply #244 on:** May 12, 2016, 12:33:58 pm »

My guess is most people feel normal after treatment. They get cured and move on. No reason to come to forums like this anymore. The odds are in your favor that you will complete the regimen, clear the virus and then lead a normal life.
--------------
I have some thoughts on this thread and I'll write something later today. This post is accurate.

slats1056 · « **Reply #245 on:** May 12, 2016, 01:50:51 pm »

It seems that no one recalls the good EOT posts as much as the bad EOT posts. The thing I like about this forums is that We are all adults that can think for ourselves and make our own decisions based on that. I also like that this is not a censured site and all views are allowed as well as debated for the greater cause. As long as You are not trying to shank someone ( in My opinion ) Your posts are just as valid as the next guys!!! I personally love to read the good stuff and feel good posts as it gives Me a boost knowing other folks are doing well. Unfortunately I am one of the MINORITY that has been having a rough time. I think that if the posts are checked out that the good ones outweigh the rough ones.
AGAIN , THIS IS MY OPINION. I HOPE EVERY ONE IS DOING WELL AND LIVING UP TO MY PERSONAK MESSAGE!

slats1056 · « **Reply #246 on:** May 12, 2016, 01:52:20 pm »

OOPS, SPELL CHECK! THAT WAS SUPPOSED TO BE PERSONAL MESSAGE AT THE END!

gnatcatcher · « **Reply #247 on:** May 12, 2016, 04:14:32 pm »

Status report since my 09/30/15 EOT: had quite a bit of fatigue on and off for the first __ weeks. By now, energy level is definitely better than before Tx but not quite as good as during the Harvoni high. Am still getting sporadic, random aches and pains that last a couple of days at most. Have just been weaned off an anti-inflammatory because both the hepatologist and my PCP said the only way to find out whether the aches and pains are EHMs of HCV or a separate diagnosis is to experiment. After 14 days of 1/2 dose, I was nearly ready to cry uncle and go back to a full dose, but I made it through all six weeks of the half dose. Today's my first day of zero dose -- so far, so good.

I realize that, given all my other diagnoses, I didn't expect that Harvoni would bring me back to full health, but only that it might keep my liver from getting worse and might even help it function better. So far, so good on that score, too.

As to whether the people who stop posting do so because they're in great shape or because they're most definitely not in great shape, my guess is that there's some of both.

A very useful discussion -- thanks everyone.

HazelAustralia · « **Reply #248 on:** May 13, 2016, 04:37:09 am »

Hi all,

I'm so sorry - and worried - to hear from all you who are struggling post-treatment. I hope you find the answers and solutions that you need as soon as possible. I appreciate that you share your journeys here.

Best wishes all,

Hazel

slats1056 · « **Reply #249 on:** May 13, 2016, 12:44:02 pm »

Gnatty, You brought up a very good yet not discussed topic on post EOT expectations of returning to full health. I for one know that I will never return too full health and do not have that expectation and speculate that a lot of others believe that the new wonder drugs will do just that! Very good point.
Just got back from My latest blood draw for the internist Myself. Hoping for some inkling of what is going on inside the old body. Fingers crossed and plodding ahead as usual waiting for the next adventure in medicine ( read that as Old Timers Syndrome )

LAUGHTER IS THE BEST MEDICINE, BUT YOUR INSURANCE ONLY COVERS CHUCKLES , SNICKERS , AND GIGGLES!!

Lynn K · « **Reply #250 on:** May 13, 2016, 05:09:03 pm »

My only hope from Harvoni was that it would by curing my hep c prevent my cirrhosis from progressing to decompensated requiring a liver transplant and if I was not able to get a transplant soon enough my early death.

So on all counts I am very pleased to say the least.

beto · « **Reply #251 on:** May 15, 2016, 12:20:46 pm »

For me, Harvoni did it's thing...I eliminated the virus. As many of you know, for me some significant health changes for the better transpired. Along with those revelations, lots of quirky health anomalies showed up. Whatever the source of those things, I intend to try to figure it out and maximize my state of health. I don't know what full health is. Alls I know is that it is OK to strive for better health...that is how I am wired and I believe that most of us are wired.

That post treatment might come with challenges based on either sudden dis-synergy or the drug effect itself, is a valid discussion and will be helpful to the 'cures to be' waiting in the wings.

Most important is the support we have all given one another throughout the process. When relapses happened along the way, as difficult as it was for most of us to jump in to the conversation, the unlucky hepper was always supported...as were those that had a rough time with side effects and EOT woes.

The virus is behind me (I hope). In front of me are a few real issues that I am working on whatever their source.

slats1056 · « **Reply #252 on:** May 16, 2016, 10:13:34 am »

Well stated Beto!!

chino1969 · « **Reply #253 on:** May 19, 2016, 09:43:42 am »

Quote from: Lynn K on April 26, 2016, 01:42:23 pm

Hi Chino

Did you have a fibroscan before treatment and have you had one post? I am very interested in this study you are involved with.

My pretreatment fibroscan Oct 14 was 27 and my post treatment almost a year after EOT in Mar 15 my score was 33 but I don't feel that was a significant difference I don't think fibroscan is super precise. I assume my cirrhosis at one year post is essentially unchanged.

Is there any medication in this study or are they just tracking patients with cirrhosis post SVR?

Best of luck

Hi Lynn.
I have never had a Fibro Scan. I have volunteered for a 5 year clinical study which will track fibrosis, cirrhoisis, etc.. The preq's. for the study require an up to date endoscopy, blood work along with the Fibro Scan. The Fibro Scan will be repeated yearly. I'll know more once I begin the study which is June 14, 2016. I am also involved in a trial that involves a more accurate and sensitive test than the current AFP. I relapsed in 2014 after a 12 week course of Olysio & Solvadi. My AFP soared to 477. My AFP is now 3.4 @34 weeks EOT and my other liver chemistries are in the normal range. I'll keep you posted.

To answer your original question(s): I never had a Fibro Scan ever & I don't know if medication will be involved in the Fibrosis study. It is my understanding that the June 14th date will establish the baseline for the study going forward. I do know that there are trials ongoing involving drugs that help to heal a damaged liver.

Good luck to you as well.

FutureThinker · « **Reply #254 on:** May 19, 2016, 11:48:28 am »

Please keep us posted -- there is still so much to learn, and thank you for helping get the answers. FT

Lynn K · « **Reply #255 on:** May 19, 2016, 12:07:29 pm »

Ok thanks chino

I also relapsed after 12 weeks Sov/Oly and was later cured with 24 weeks Harvoni 15 weeks Ribavirin. My AFO stayed in the same range though as it had been around 26. My last AFP was 10.6 still slightly out of normal range and my platelets were up from 90 to 111 on my last test so some hopeful signs anyway

Thanks and keep us posted

Rosie13 · « **Reply #256 on:** May 22, 2016, 10:00:51 pm »

HI EVERYONE! I have been waiting for the results EOT 24 & so proud to join this awesome club of UNDETECTED's...Mayo Clinic closed my case & we all hugged & that was it! To all the people out there that are thinking about treatment or scared or been told no ...keep on pushing you will get cured. Miracles really do happen!

beto · « **Reply #257 on:** May 23, 2016, 10:20:48 am »

Thrilled for you Rosie!!!

slats1056 · « **Reply #258 on:** May 23, 2016, 10:49:20 am »

WHOO HOO ROSIE! WELCOME TO THE CLUB! I REALLY LIKE THE PART ABOUT CASE CLOSED

FutureThinker · « **Reply #259 on:** May 23, 2016, 11:47:49 am »

Rosie13, LOVE that phrase "case closed"!!!!!!!!! So very happy for you and I am hopefully on my way to joining the club! All the best, FT

KimInTheForest · « **Reply #260 on:** May 23, 2016, 12:04:29 pm »

Congrats on your SVR24 Rosie !!!

Bob V · « **Reply #261 on:** May 23, 2016, 03:20:26 pm »

Congrats Rosie13

Rosie13 · « **Reply #262 on:** May 24, 2016, 10:56:36 pm »

Thanks to all my fellow warriors...I could not have done it without you!Love you all!

Lynn K · « **Reply #263 on:** May 24, 2016, 11:18:18 pm »

Great news congrats!

Philadelphia · « **Reply #264 on:** May 25, 2016, 09:11:50 am »

Congrats Rosie13. Great news!

brie41 · « **Reply #265 on:** May 25, 2016, 10:08:33 am »

Hi Rosie,

Congrats!! It must feel amazing to know to know you are free and clear!! That has become my motto as of late! Wishing the same for all of us! Brie

Bob V · « **Reply #266 on:** May 25, 2016, 12:32:25 pm »

Yay Rosie!

Rosie13 · « **Reply #267 on:** May 25, 2016, 12:43:29 pm »

Looking forward to read exciting news about the newly cured for all still on tx.It is a surreal time to be close to the pulse of banishing this disease forever. Keep posting your thoughts & worries.I'm staying here ...it's an unfinished blockbuster novel!!!

Max · « **Reply #268 on:** May 27, 2016, 01:22:26 pm »

I thought I should check in. I have been so busy and feeling so good after slaying the Dragon. March 22, 2016 was about 18 weeks EOT. I had Harvoni for 12 weeks ending November 8 , 2015. Today is May 27 , 2016 and the reason I have time is a Hernia as slowed me down. I forgot I am 61 years old and should take it easy. My only side effect seems to be ringing and buzzing in the ears from time to time. My numbers are really good. I can no longer sit still or take a nap like the old C daze. Thank you Harvoni for my new life.

gnatcatcher · « **Reply #269 on:** May 27, 2016, 05:28:41 pm »

Way to go, Max! Belated congrats to Rosie (I was on a trip and haven't caught up yet).

Bob V · « **Reply #270 on:** May 27, 2016, 05:42:48 pm »

Great news Max. Congrats.

BTW good luck with the Hernia, been there too.

Rosie13 · « **Reply #271 on:** May 27, 2016, 11:51:08 pm »

Congrats Max! I relate to your activity level....but I gave up the idea of catching up on all that was left hanging while I had my Harvoni daze. Every day I'm just grateful to be here!

Thanks Gnatty!!!!!!

chino1969 · « **Reply #272 on:** July 18, 2016, 01:47:36 pm »

1. 4wk - 12 wk EOT VL status = SVR
2. Treatment duration = 24 weeks Harvoni only - 2/23/15 to 8/10/15
3. tx naive or experienced
• Interferon/Ribavirin - 2003 timeframe - unsuccessful, taken off treatment due to no viral load reduction coupled with anemia, low platelet count, low WBC count
• Solvadi/Olysio combo. - spring 2014 - 12 week couse - SVR all during therapy, relapsed 12 weeks after treatment
4. Genotype (1a or 1b) = 1a
5. F1-F4 fibrosis status (6/2016) = Meld Score <9, Child Class A, Fibroscan 18.4
6. Initial VL (date) = 6 million units

Rosie13 · « **Reply #273 on:** July 18, 2016, 09:19:29 pm »

Chino! So happy for you.....the path was not easy ...you persevered longer than most SVR is yours to CELEBRATE ! Yeah!

AussieRosa · « **Reply #274 on:** July 18, 2016, 10:21:12 pm »

Congratulations, Chino. It feels great, doesn't it. Hope you have a long and healthy life now.

Lynn K · « **Reply #275 on:** July 18, 2016, 10:23:48 pm »

All right Chino congrats!!!

chino1969 · « **Reply #276 on:** July 19, 2016, 05:33:16 pm »

Thanks all. It is amazing how much of yourself you shut down when you have this disease. I really never thought I would be cured and resigned myself to my fate until my 1st relapse with Solvadi/Olysio in 2014. After that I decided to be my own advocate. My local GI prescribed 24 weeks of Harvoni and worked through the 1st denial from the insurance co.. The insurance co. was not going to cover it because they said the 12 weeks of Solvadi/Olysio failed. My insurance co. referred my case to the Medical Review Institute of America who overturned their denial. My 24 weeks of Harvoni was approved. In the interim I sought the services of a renowned Hepatologist at The Univ. of Penn. Perelman Center For Advanced Disease. I have been seeing him ever since and am enrolled in two clinical studies he is in charge of. I now have a team that I sought out as opposed to just following the norm. It put me in charge of my own situation and worked out very well. I have the benefit of a major university research programs, the consult of one of the best Hepatologists in the country and the local consult of my GI of over 20 years. The communication flows between the two and I am very pleased with how it all turned out. I guess the reason I am relaying all of this is to encourage all those out there still battling this disease. You have to be active and fight by being your own advocate. This disease is on it's way to eradication. Never give up hope and never stop fighting. God bless to all who travel this journey.

KimInTheForest · « **Reply #277 on:** July 19, 2016, 05:37:00 pm »

Good going, Chino! Good on ya, mate!

kim

Rosie13 · « **Reply #278 on:** July 19, 2016, 11:03:22 pm »

Chino, this thread will save lives.It is hard to be your own advocate when your sick but we stand here cured after doing just that. Empowerment!

Cute · « **Reply #279 on:** August 29, 2016, 09:28:49 am »

Dear community,

Last 4 month I was not so active in this chat. I have to inform that we managed mother's treatment with Harvoni. After long and difficult battle. She has been already cured for 6 months. PCR and blood work are ok.

We closed virus page, but not cirrhosis. Still she has liquid in her abdominal and I pray for her. Doctor still believes that as liver regeneration will continue the volume of abdominal liquid (about 4-5 liters) would decrease. I so hope to see this result. Most wished outcome by me!!!
So far we have observed functioning stable liver, but despite of that liquid level remains high.

I believe in your opinion. You know this illness well rather than anybody, even doctors. What do you think about our chances? Does it possible that liver will regenerate fast? Do you know examples when after good treatment the liquid goes down and liver heals itself? Need your opinion and expertise.

Otherwise, I feel myself desperate and alone. It turns me that despite of that we slayed virus, but failed to restore mother's health

Lynn K · « **Reply #280 on:** August 29, 2016, 12:00:49 pm »

Is it possible for you mother to receive a liver transplant?

There is some evidence a damaged liver may improve with time but there is no way to know for any one person if they will improve. However even if she needs a transplant eventually she no longer has hep c to attack the new liver.

As far as the ascites has her liver specialist suggested any dietary restrictions? She needs to limit salt intake to less than 1200 mg/day I assume she is taking a diuretic to help with the ascites if not her doctor should prescribe one for her

Sorry to hearing your moms continuing health problems. Is she under the are of a gastroenterologist associated with a transplant center? They are best equipped to help a patient with advanced liver disease

Good luck
Lynn

Mugwump · « **Reply #281 on:** August 29, 2016, 06:34:39 pm »

Quote

We closed virus page, but not cirrhosis. Still she has liquid in her abdominal and I pray for her. Doctor still believes that as liver regeneration will continue the volume of abdominal liquid (about 4-5 liters) would decrease. I so hope to see this result. Most wished outcome by me!!!
So far we have observed functioning stable liver, but despite of that liquid level remains high.

I have heard of the slow reversal of ascites when the other functions that clear the fluid are not severely compromised. The key here is if kidney and essential renal functions are still good, chances are the liver will heal to the extent that normal exchange of fluid in the abdominal space can slowly overtake the level of leakage. If there has been no history of kidney failure then her chances are now very good for a decent recovery if the root cause of the progression to decompensated cirrhosis is gone.

My level of cirrhosis is noticeably improved and my liver is actually slowly shrinking and becoming less stiff. I was very fortunate that I never reached the decompensated state but I was getting close. Today, one year and four months post treatment, I had a full gastric ultra sound and the relative level of portal hypertension and pronounced level of discomfort from distention has reduced considerably, but it took over a year.

Everyone here is pulling for her I am certain. Please keep us in the loop regardless of what happens.

Ditto on the prayers.
Eric

jakas · « **Reply #282 on:** August 31, 2016, 01:36:55 am »

My news :
SVR 24

KimInTheForest · « **Reply #283 on:** August 31, 2016, 01:42:49 am »

Quote from: jakas on August 31, 2016, 01:36:55 am

My news :
SVR 24

Well done, Jakas! Congrats!

kim

Lynn K · « **Reply #284 on:** August 31, 2016, 02:30:48 am »

Great news Jakas doing the happy dance for you !!!

jakas · « **Reply #285 on:** August 31, 2016, 10:44:05 am »

Thanks and respect to you guys for helping in the journey. I AM very GRATEFUL for that.

FutureThinker · « **Reply #286 on:** August 31, 2016, 01:01:16 pm »

Jakas, EXCELLENT NEWS!! All the best, FT

badbradley · « **Reply #287 on:** September 02, 2016, 09:56:22 am »

Congratulations Jakas! I started treatment 5 days before you. 12wks Harv/Ribas and I also am SVR24 "CURED"
To those fighting for treatment, KEEP FIGHTING!

Brad

FutureThinker · « **Reply #288 on:** September 02, 2016, 12:06:35 pm »

Badbradley -- Thrilled to hear the Harvoni/riba was the ticket for you!!! All the best to you in your new life, FT

Lynn K · « **Reply #289 on:** September 03, 2016, 02:15:21 am »

Alright great news BadBradley congrats!

jakas · « **Reply #290 on:** September 04, 2016, 04:38:05 pm »

Badbradley excellent news

Philadelphia · « **Reply #291 on:** September 05, 2016, 06:46:21 am »

Great news you two! Wonderful.

kimlav · « **Reply #292 on:** September 18, 2016, 12:37:09 pm »

Hi everyone,

It is official, I get to join the SVR24 gang!

I found the 8 weeks of Harvoni to be very tolerable with little to no side effects. I felt fine before treatment and feel fine now 6 month later. Having said that, I am concerned for those who cannot say the same and I find myself at this forum every day. I imagine that will continue for quite some time.

A time I thought I would never see has arrived and I am grateful that there really now is a cure. Now to bring down the costs so the masses can be treated and cured. For any Canadians (or anyone) reading this, you may want to sign a Petition at Action Hepatitis Canada which is a group lobbying for treatment for all Canadians.

And to those who continue to suffer from post treatment issues, I am reading and following your stories hoping that these issues resolve and hoping to learn why some are experiencing such after effects.

I can't put into words how valuable I have found this forum to be and thank all who continue to support it and offer their help. I will be around too.

Kim in the Boreal

Lynn K · « **Reply #293 on:** September 18, 2016, 04:35:36 pm »

Hey Kim welcome to the hep c free world!

Congrats on the SVR24!

Lynn

KimInTheForest · « **Reply #294 on:** October 03, 2016, 10:50:21 pm »

way to go, Kim! Two wins for the Kims!

kim

Philadelphia · « **Reply #295 on:** October 04, 2016, 08:35:43 am »

Congrats Kim! So much good news

Mugwump · « **Reply #296 on:** February 23, 2019, 05:26:25 am »

Quote from: FutureThinker on May 12, 2016, 12:02:27 pm

This is an insignificant question with all the other issues being discussed on this thread right now, but I've put out the question elsewhere on this forum with minimal responses re: decreased tartar buildup during &/or after treatment. What has your experience been? Thanks, FT

I have brought this old post up for a very good reason. The thread is one that started to show some of the post treatment effects that were concerning and FutureThinker posted one positive one that puzzled me at the time.

My last visit to the dental hygienist went much more smoothly than ones prior to treatment. I commented that since being cured of HCV and having my liver functions and stiffness improve over time, my salivation had returned to more normal levels. The dentist who came in to check out my dentition also brought up the possibility that curing HCV and relieving cirrhosis in progress also had the wonderful effect of normalizing my salivation. This reduces tartar and plaque build up. So yes to FutureThinker the possible mechanisms at work here is confirmed by dental professionals and my experience. Before treatment I had halitosis caused by cirrhosis and related declining dental health. Indeed curing HCV has slowly improved my overall dental health.
Cheers
Eric

andrew j · « **Reply #297 on:** February 23, 2019, 06:10:22 pm »

Hi Eric,

I'm just about to have my teeth looked at.
I can't shut my teeth properly following a rash of extractions, when I had Hep C.
... Weaker teeth, weaker gums ... weaker everything, of course.
It's all strengthened up amazingly!

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