Author Topic: Harvoni Side effects (Read 2177418 times)

KimInTheForest · « **Reply #2600 on:** September 20, 2015, 04:19:24 pm »

Quote from: Katie on September 20, 2015, 03:01:00 pm

I also haven't felt good since for the past 6 months after stopping Harvoni, however my energy is returning and I am confident I will get back up to speed soon. All of my tests and blood work came back perfect so it has been puzzling both for me and my doctor and I was worried it was the new normal for me, but I am improving so I am hopeful and so grateful to be Hep C FREE!

Hi Katie. I fell off a cliff post-treatment. I was housebound and even bedridden for most of my first 7 weeks post-treatment. I was experiencing extreme paralyzing fatigue, fever and massive night sweats. Yet no pathogen could be found, and I don't believe there was an external pathogen. I believe it was all an aftermath of treatment - perhaps a hypersensitized immune system that had not yet realized its job was over and it could go back to "normal' mode, or find its new normal in this post-HCV body. After 4 weeks, I started to pull out of it, but then went in for a B12 shot, which sent me right back over the cliff and into bed. That could be explained by the hypersensitive immune system theory. The shot put it on high alert again (as I believe any injection will.)

I could hardly eat and had already lost 10 lbs during treatment, so it was very scary. I have since lost another 5 lbs. When I could manage to drive myself a few blocks to a store, it was like I was in a woozy delirium.

I am happy to say that, in my case, my mysterious malaise seems to have broken as of yesterday. I am still anemic and low-energy from the ribavirin, but I no longer feel "sick".

But my main reason for responding to your situation katie (sorry for taking so long to get to it!), is that I found during lots of testing my doctor did in trying to figure this out, that I am actually deficient or at least low in a number of vitamins and minerals: iron, B12, Vit D, potassium, magnesium a bit. I was not "out of bounds" on any of these items. So many GPs who aren't informed about nutrition won't think there is a problem. But my GP is excellent on nutrition, attends conferences all over the continent on it. And her point is that it is not good enough to be 3.7 mmol/L on potassium (reference range 3.4-4.5). Most people will not feel or be their best below 4.0 or even 4.3.

So this is my long-winded way of asking if you have had some nutritional testing done for vitamins and minerals that are not normally tested. I had to pay for my Vitamin D test myself. But It was worth it. I am in the low end of "normal", when really everyone would benefit from being above the current reference range (75-150 nmol/L) for best health, and to help recover from anemia (my situation).

All the best to you, Katie!

kim

Katie · « **Reply #2601 on:** September 20, 2015, 04:32:47 pm »

Thank you Kim. I agree with you that the normal ranges of things are not always the optimum for feeling your best as everyone is different. I'll have to drag out my results and see exactly where I am as I was tested. Unfortunately we don't have a naturopath here in our community. About 10 years ago, my vit D level was at 13! I was sick all of the time and had to insist for the Vit D test. The results did get their attention, $:-\$ Living in a rain forest, they have since found, almost everyone here is low on Vit D. I have been taking D supplements to boost it but can't get it above 38-40 and I can't expose myself to much direct sun as I have a history of basal cell.

Glad you are feeling better too. I actually worked on my table saw yesterday and cut all the boards for the bookcase that has been waiting for me to get at since last March! It felt good but I am stiff and worn out today. Baby steps but it will get done!

Take care and keep in touch and for all of you not feeling all that good. Keep the faith!

Katie

KimInTheForest · « **Reply #2602 on:** September 20, 2015, 04:50:36 pm »

I always love hearing about your construction and woodworking projects, Katie. I used to do a lot of that myself. I love handling wood. Hope to get back to that more. I too live in a rainforest. Probably same rainforest, same Vit D deficiency. haha!

kim

Scoutdoy · « **Reply #2603 on:** September 20, 2015, 07:52:28 pm »

Eric I just read your statement and I think you are on the right track. I read quite a few threads on here and I have it seems that people with better liver scores f-0 and f-1 irrelevant of viral load seem to experience less side effects. Don't know if that is true or not but it seems that way.

Scout

beto · « **Reply #2604 on:** September 20, 2015, 07:56:15 pm »

There is a tenet of homeopathy that believes that healing takes the reverse course of the disease. So it is not something that just happens... one goes back through the symptoms in reverse order. The idea is that the longer one has an affliction, the deeper the disease or dysfunction entrenched itself into the body. Whether this idea resonates with anyone... for the most part, most of us have been bedfellows with HCV for many moons. Regardless, there are true side effects from the chemical changes in the body directly from the drug and there are those that are part of the healing process and everything in between. I like the notion brought up that bodies must adjust to the disease free phase. With opiates, our bodies begin to incorporate the high endorphin state as normal... doesn't like it when we stop. Lastly, as stated earlier, these drugs are fast. We are talking death to virus in weeks.

byebyeC · « **Reply #2605 on:** September 20, 2015, 09:25:13 pm »

Quote from: beto on September 20, 2015, 07:56:15 pm

There is a tenet of homeopathy that believes that healing takes the reverse course of the disease. So it is not something that just happens... one goes back through the symptoms in reverse order. The idea is that the longer one has an affliction, the deeper the disease or dysfunction entrenched itself into the body. Whether this idea resonates with anyone... for the most part, most of us have been bedfellows with HCV for many moons. Regardless, there are true side effects from the chemical changes in the body directly from the drug and there are those that are part of the healing process and everything in between. I like the notion brought up that bodies must adjust to the disease free phase. With opiates, our bodies begin to incorporate the high endorphin state as normal... doesn't like it when we stop. Lastly, as stated earlier, these drugs are fast. We are talking death to virus in weeks.

Hi Beto,

I really like the idea of visualizing what you said, seeing in my minds eye, the reversal of the bad things that hcv has done to me over the many moons

Thank you!

KimInTheForest · « **Reply #2606 on:** September 21, 2015, 12:38:23 am »

Quote from: beto on September 20, 2015, 07:56:15 pm

There is a tenet of homeopathy that believes that healing takes the reverse course of the disease. So it is not something that just happens... one goes back through the symptoms in reverse order. The idea is that the longer one has an affliction, the deeper the disease or dysfunction entrenched itself into the body. Whether this idea resonates with anyone... for the most part, most of us have been bedfellows with HCV for many moons. Regardless, there are true side effects from the chemical changes in the body directly from the drug and there are those that are part of the healing process and everything in between. I like the notion brought up that bodies must adjust to the disease free phase. With opiates, our bodies begin to incorporate the high endorphin state as normal... doesn't like it when we stop. Lastly, as stated earlier, these drugs are fast. We are talking death to virus in weeks.

That's a very interesting concept, beto, about healing taking the reverse course of the disease. Thank you for sharing that.

kim

Lynn K · « **Reply #2607 on:** September 21, 2015, 02:25:25 am »

Quote from: Scoutdoy on September 20, 2015, 07:52:28 pm

Eric I just read your statement and I think you are on the right track. I read quite a few threads on here and I have it seems that people with better liver scores f-0 and f-1 irrelevant of viral load seem to experience less side effects. Don't know if that is true or not but it seems that way.

Scout

Hi Scout

Dunno I had a VL about 2 million and F4 for 8 years but only side I had was anemia from the Ribavirin other than that not much to report

Best to all

gnatcatcher · « **Reply #2608 on:** September 21, 2015, 05:29:33 am »

Like Lynn, I seem to be another exception (based on 74 days of Tx). I've had HCV for nearly 44 years, my VL has topped 9 million, and a FibroScan put me at F4, yet most days I have no side effects, and those few I've had have been very mild. I'll soon know if the post-treatment period will be as smooth. -Gnatty

Scoutdoy · « **Reply #2609 on:** September 21, 2015, 11:05:42 am »

Kim and gantry that's great...what I meant by my post was that it seemed like people who were having a lot of side effects seemed to have lower liver scores. Not all people with lower scores. It probably has no correlation to it, it just seemed like it. Everyone is different.

Scout

Else · « **Reply #2610 on:** September 21, 2015, 12:07:59 pm »

Quote from: gnatcatcher on September 21, 2015, 05:29:33 am

Like Lynn, I seem to be another exception (based on 74 days of Tx). I've had HCV for nearly 44 years, my VL has topped 9 million, and a FibroScan put me at F4, yet most days I have no side effects, and those few I've had have been very mild. I'll soon know if the post-treatment period will be as smooth. -Gnatty

Your signature stats are unbelievable, Gnat! What a testament to the firepower of Harvoni.

Lynn K · « **Reply #2611 on:** September 21, 2015, 11:58:45 pm »

Yup Gnatty

More or less the same here hep c for about 37 years with 3 tx with interferon based tx and a null responder plus relapsed on Sovaldi and Olysio last year and having cirrhosis for 8 years makes me tough to cure.

So finally on my 5th treatment of 24 weeks of Harvoni and 15 weeks of Ribavirin I am finally cured of hep c.

If I can beat hep c hopefully everyone can

Best to all
Lynn

Bree · « **Reply #2612 on:** September 22, 2015, 03:46:50 am »

Yep, these drugs are miraculous! My viral load was over 3.5M going in with a f1-2 score, yet at 4.5 weeks, undetected and negative. Boggles the mind. I love Harvoni. I'm a lucky one. I've had some moderate sides... I could list them but try not to talk about them too much as I don't want to give them focus and power. I am empathetic to those with heavy sides ... I do understand... been there as interferon and riba almost killed me. I'm hoping for an easy post treatment (I'm a little scared but trying not to be) and looking forward to SVR.

redcat36 · « **Reply #2613 on:** September 30, 2015, 01:26:35 am »

Hi everyone,
I'm currently in my 5th week of treatment and had my first blood test since starting. My numbers have dropped significantly: ALT = 24, AST - 27, Bilirubin - 0.6, and Viral Load = Detectable, but unquantifiable (less than 20). I continue to have chronic fatigue syndrome, but other side effects barely noticeable. My prescription costs have been $12 since the 3rd week. The first one was $2598. It looks like my total cost including blood test co-pays, and upcoming lab tests, etc. will total around $2850. Yay! Much gratitude to Gilead, Kaiser Senior Advantage (Medicare) and the medical staff at Kaiser for getting me approved for this miracle treatment.
Regards,
Larry

Katie · « **Reply #2614 on:** September 30, 2015, 01:30:48 am »

Great news Larry. You are well on your way so welcome to the Harvoni Club! Keep us posted and Congratulations on your great results as a STRONG responder!

Katie

concerned father · « **Reply #2615 on:** September 30, 2015, 07:59:36 am »

After four weeks on Harvoni, my daughter is having her first blood test today. I hope all goes well. Other than feeling tired all the time, she is doing well.

gnatcatcher · « **Reply #2616 on:** September 30, 2015, 08:25:33 am »

Glad your daughter no longer has occasional headaches. I hope she has not let the fatigue get in the way of some regular exercise, which is helpful mentally (the sense of accomplishment) as well as physically (muscle tone). Her viral load will probably be much lower than her baseline VL and may even come back undetectable. I look forward to hearing your report.

Gnatty

Else · « **Reply #2617 on:** September 30, 2015, 02:30:02 pm »

Congratulations to all. Progress!

mvnwy · « **Reply #2618 on:** September 30, 2015, 03:12:58 pm »

Hi Art,

I am having side effects. I'm in week 6 and will be doing treatment for 8 weeks total. Had no cirrhosis and 4 million or so viral load. First week I thought I was going to die, lol! My mouth was raw inside, extreme fatigue, body aches, nausea, memory problems.

Then on day 7 I started feeling better than I have in ten years! That lasted 9 days.

Then gradually started getting tireder and started having joint pain, brain fog, depression, irritability. Got on antidepressants and that really helped a lot. So far, physical symptoms have slowly increased and I am SO glad I only have 11 more days to go!! I am sure these side effects are nothing as bad as previous treatments.

At 4 weeks the virus was undetectable and my enzymes are in the 20s! Pretty cool!!

I am still working a couple of hours a day. Fortunately I'm self employed. Seems to be so different for each person. Out of the 40 people my doctor has treated with Harvoni, I'm only the second one with ANY side effects. So odds are, yours won't be too bad. This stuff works so whatever happens is well worth the pain.

Hope I didn't scare you but I have felt like the weirdest person in the world because most people feel so great on this stuff so it's good to know I'm not the only one. :-/

Cindy1955 · « **Reply #2619 on:** September 30, 2015, 06:22:48 pm »

Hello all. I am new to this site but have spent all day reading. I want to thank you all for the information, humor and encouragement.
This will be day 3 for me with the Harvoni. So far, side effects have been minimal. I seem to be hungrier than normal but have been able to continue my daily exercise routine and hope I will be up for my normal long walk I generally take on the weekend (8-10 miles).

I was diagnosed with Hep C (Non A-Non B) in 1992. Probably contracted in 1972 with a blood transfusion. Thankfully, when I donated blood, they did the test so I was able to find out about it early-not that there was anything to do about it at that time

This is my first go at treatment and I am very encouraged by what I have read.

I know I will have other questions but just wanted to introduce myself.

Again, thank everyone for the information.

Cindy

gnatcatcher · « **Reply #2620 on:** September 30, 2015, 06:48:33 pm »

Cindy, we are kindred souls -- infected via transfusions a year apart and treatment naive. I just took my 84th (final) Harvoni pill this morning, and it was thanks to reading this very thread that I was comfortable swallowing the first orange diamond twelve weeks ago. Like you, I was hungrier than normal but experienced minimal side effects. I continued my normal exercise routine throughout treatment and managed to gain only two pounds despite having a voracious appetite.

Welcome! I look forward to seeing your four-week lab results.

Gnatty

Else · « **Reply #2621 on:** September 30, 2015, 06:57:12 pm »

Welcome Cindy! You'll find lots of good info and camaraderie here. Wow, that is a long walk you take. It sounds like you're off to a healthy start. Don't forget your water.

slats1056 · « **Reply #2622 on:** September 30, 2015, 07:03:44 pm »

Mvnwy Don't feel weird at all, I too had some pretty awful side the first 4-5 week. They began to taper off in severity by week 7. Don't give up! Just keep going forward one step at a time. I have been working full time during the whole 12 weeks. It's been rough as a cob at times!!! But I just think about the rewards all the pain brings with it. I have 6 days left to EOT. The last 2 week have been the best so far. Still feel ragged but feeling pretty good overall!! Stay with it everybody!!!
See you on the other side with bells on!!!

IF YOU THINK THINGS CAN'T GET WORSE, IT'S PROBABLY BECAUSE YOU LACK SUFFICIENT IMAGINATION! lol!!

Scoutdoy · « **Reply #2623 on:** September 30, 2015, 07:35:25 pm »

Woo woo gnatty

Scoutdoy · « **Reply #2624 on:** September 30, 2015, 07:40:21 pm »

Tommy, your on the final countdown, I am 11 days behind you. This really went pretty fast, it seems like just yesterday I took the first diamond.

Scout

Bree · « **Reply #2625 on:** September 30, 2015, 09:23:06 pm »

I love that you all call them diamonds! Not only for the shape but for the value!

mvnwy, hang in there re the sides. It's worth it.

Gnatty... way to go, you did it! You are so awesome!

Cindy, welcome! My appetite was all over the map... sometimes, famished, couldn't believe my appetite, sometimes not so much... I imagined my body was working hard and needed the nourishment. I watched my diet (sometimes) and managed to lose about 3 pounds (was hoping for 5). I had read that folks gain weight temporarily while on Harvoni so I went in aware... I figure that's not the most important thing to worry about on treatment!

Tommy and Scout almost home! My body is catching up to itself but I must say, I'm feeling pretty happy! Bree

slats1056 · « **Reply #2626 on:** September 30, 2015, 10:44:15 pm »

Scout, You go girl. Right there with You. I used to smoke 2-3 packs a day up until about 3 years ago. Think I am going to have to do something come New Years to go along with that SVR12 that will be coming up!
Gnatty, You sunk My battleship!!! LOL, Cut back to about 7 1/2 liters. Lost about 10 lbs. since starting Tx. Seems I was flushing out more than just the little HEP buggers. Been trying to eat more fruit & veggies to help. Believe Me , that's pretty rough on an old meat eater like Me. Ironic that the last pill bailed on Your Harvoni buzz ain't it?
Cal, WOW A personal stalker, Just what I've always wanted! Yippee! Catch Me if You can!!! I'll be lurking and skulking in the shadows, waitng & watching!!!! LOL.
Mvmwy , Got Your PM, always good to have re-enforcements in the wings to give You some back up & a helpng hand when needed. Mine have been here on the forums. Great place to be. Hope You get to feeling better.
Cindy1955, BTW, Hi & welcome . I almost missed Your post while I was posting to Mvmwy. Glad Your Sx's are easy, wish they all were.

KNOWLEDGE IS REALIZING THE STREET IS ONE-WAY, WISDOM IS LOOKING BOYH DIRECTIONS ANYWAY!

slats1056 · « **Reply #2627 on:** September 30, 2015, 11:21:30 pm »

Bree, To bad they are so hard to get for some who need them. Unobtanium I guess, so sad. I wish My butt would catch up with Me, it's still dragging behind Me a pretty good way!
Hope everybody gets to feeling better! BTW, try to post Your Labs & info. on Your signature lines so we can all follow & compare!

Scoutdoy · « **Reply #2628 on:** September 30, 2015, 11:29:56 pm »

Hey tommy, and everyone who has finished or on their countdown.....odd isn't it, how you really kind of do get to know the group of people who are going through treatment along with you. It's so nice for me to have this forum and to be going through the ups and downs with others who truly understand what hell I have felt, alone, for the last 20 years. Each week now, my group is finishing up their pills and almost everyone has had succesful numbers and are undetected! I am grateful that I had everyone here with me during this journey, I believe that is why it seemed to go by so quickly for me. I hope our group continues posting on the past tx forum so we can experience everyone making it to the 12 week svr. For the new group that is just starting out, you will understand what I am talking about in a few weeks.

Scout

Bree · « **Reply #2629 on:** September 30, 2015, 11:33:50 pm »

Tommy, I had to look up Unobtanium - my what a big word, I'm impressed! With so many new things in the pipeline, I do think the day will come it will be so much easier. Not much help to those who need it NOW though. I'm hoping everyone who needs these meds can get them soon.

I'll be getting my EOT VL probably by Friday so I'll update sig line to reflect values, inc. LFT, etc.

Just debating a walk... seems like too much... my little dogs, Sophie and Sebastian just stare at me, like really? They have a whole yard, but not the same as greener pastures. ha.

Bree · « **Reply #2630 on:** September 30, 2015, 11:36:21 pm »

Scout, here here to what you said! We're like a team. A winning team and cheering everyone on.

I went thru inf/riba alone - freaked out my family and friends. Lost a few friends along the way, and disrupted relationships with family. Wish I had known about these forums then.

It will be so meaningful for all of us on the other side to see us all UND. I really believe that is what will happen.

Lynn K · « **Reply #2631 on:** September 30, 2015, 11:58:15 pm »

Unobtanium,imovabiliam, impermabiliam some of my favorite freshman chemistry words lol

beto · « **Reply #2632 on:** October 01, 2015, 01:05:17 am »

Hey all,

So I had got some disturbing and painful information today that left me a bit out of it and depressed...so I high-tailed it to the docs office and asked for a copy of my recent labs. Every time I started back over the negatives in my mind I just looked at my labs. I don't think my liver enzymes were that low before hep. That beautiful word "undetected".

Interesting. As I approach that final pill that hopefully pounds the last nail in the coffin of those tiny nucleotides wrapped in a protein shell, I realize that those little hep buggers were a part of me, mingling with my cells, communicating with my DNA and living in a sort of synergy with my being for 40 years. Aint gonna miss em' but, so strange to think that they had a big hand in defining me. I can't deny that they were part of who I was and therefore part of what I have become.

The person today that was the bearer of bad news was probably amazed at my strength dealing with the information. It occurred to me that perhaps the silver lining of this disease is that it has made me...and us...strong people. People that do not quit. People that never relented against a virus that was taking our brethren and beating our treatments.

Bravo my fellows of the greatest graduating class of our lives. We are actually doing this.

Philadelphia · « **Reply #2633 on:** October 01, 2015, 01:16:39 am »

Hey Beto, it's important to have some good with the bad. Gives us something to cling to.

This is a virus I thought I would die with - probably die OF.

The possibility that I might be living without it, and continue to live without it, amazes me. This is a good time to be fighting this fight.

Best wishes for whatever ails you.

Bree · « **Reply #2634 on:** October 01, 2015, 01:27:30 am »

Beautifully written sentiments Beto. I like you, love seeing "Undetected" and "negative" on my paper and hopefully I'll have another one this Friday.

I must say, it's only been 3 days off Harvoni and I've been sick on top of that... still I feel all this "free time"... like it has been taking my time in my body and mind all this time, even subconsciously. In addition to decades of that, it's taken 6 months to get it, 3 months on it and 3 for final results. One year. Trying to live life... cancel that ... living life anyway! Some losses are good losses, if you know what I mean. Even though, there's a readjustment and realignment process.

We are a strong group, not to be underestimated, and as my Mom always said "You have moxie"! Wishing you and everyone lots of "free time"!

gnatcatcher · « **Reply #2635 on:** October 01, 2015, 04:29:41 am »

Quote from: beto on October 01, 2015, 01:05:17 am

. . . As I approach that final pill that hopefully pounds the last nail in the coffin of those tiny nucleotides wrapped in a protein shell, I realize that those little hep buggers were a part of me, mingling with my cells, communicating with my DNA and living in a sort of synergy with my being for 40 years. Aint gonna miss em' but, so strange to think that they had a big hand in defining me. I can't deny that they were part of who I was and therefore part of what I have become. . . .

beto, you are an eloquent graduation speaker -- literally our valedictorian!

Thank you especially for "those tiny nucleotides wrapped in a protein shell" -- finally, thanks to you, I have a science-based image for the little buggers. When I had cancer, I wasn't the type to visualize sharks attacking the cancer cells. As soon as I read that the problem with cancer cells was that, unlike normal cells, they don't die when they are supposed to (apoptosis), I found my image and method: to love them to death -- "No hard feelings, guys, but it really is your time to leave the stage."

Gnatty

Else · « **Reply #2636 on:** October 01, 2015, 10:08:13 am »

Best to you, Beto, about your bad news.

Just glad that you have the strength and intelligence to stay focused on the positive.

Quote

so strange to think that they had a big hand in defining me.

I've had this very thought. Often, lately. More and more so, the better I feel. It's not a negative reflection exactly. Just strange. Or maybe curiosity? What is a "not sick" me going to be like? I've likely been infected my entire adult life.

beto · « **Reply #2637 on:** October 01, 2015, 10:41:16 am »

Well said Gnatty and you make a very good point in the direction that I was going. Not everyone has to deal with these types of lingering illnesses...and many who do deal with them, don't really embrace them or rather, consider them as most of us on this forum have done. It really puts us in a very special club. The way you looked at cancer is so novel, yet it was that experience that brought out the innovative thinking. This allows us to confront problem solving of all kinds with a different reproach.

I have been to other forums and I truly believe our energy, support and perspective is special right here at Hep C central.

Else- Thanks. Yes weird to think about what it would be like without our nagging little friends that are with us everywhere we go every moment of our lives...then perhaps suddenly gone. I did have a difficult revelation come to pass...if the same thing had happened 5 years ago, I would not have had my labs to carry me through it.

Bree - Yes...it is like the idea of getting reacquainted with your body. Being sick with a cold or other virus your body is like exercising without having to keep the C in check.

So Gnatty, you know I really sucked in high school and was a long way from being a valedictorian...who would have expected me to me at the top of my class in hepatitis C school

slats1056 · « **Reply #2638 on:** October 01, 2015, 10:52:25 am »

Heavens to mergatriod, exit stage left----and fade to black. Hep c free is going to be an adjustment. Physically, mentally , spiritually, virtually , ETC.ETC. Like Beto said he just kept going back to the lab results. I don't know , maybe I'll frame it as My graduation Diploma and shrink and laminate a copy for the wallet to look at when things get bad. Bravo Beto , extremely well written.
As one ponders their own mortality the ever looming thought of dying from the virus directly or from its' many complications ( many of which are yet to be discovered ) is never far away in the subconscious. I personally had doubts of making it to retirement age without My Liver falling out of My butt! ( I know!!!not a good visual ) Always the Joker , Yet just under the surface Serious beyond the facade. A defense mechanism? A way of coping? Fear of the unknown? One thing is sure I do not fear death. I will cheat the reaper as log as humanly possible though!! In that time I will attempt to make up for the lost time from My early adulthood ,through thirty six plus Year with My wife , raising three wonderful children ( who I am extremely proud of ,Yet don't seem to tell them often enough ) , two beautiful grand kids . As well as the many sacrifices only You people here can begin to understand. Maybe I should start with apologizing for My distant attitude to all that have been close to Me over the years. ( Probably better read as being an asshole that pushes people away, at least I have been told that. Not My words! )
Beto got Me to thinking , all of the positives are that much sweeter and enjoyed more so in spite of the negatives!!! Maybe it is time I tried to break down the wall that I have built around myself in the last forty plus years! Live more , love more and be more compassionate to those close to Me and to My fellow Man!!!

Here is to good health , good fortune, good friends , a good life , and all that is good that we have missed over the many Years of suffering in silence with this scourge to Mankind. Still thinking about designing a Tattoo of My avatar to celebrate SVR24!! So there take that You Little Hep C Bastards!!!!!!!

Scoutdoy · « **Reply #2639 on:** October 01, 2015, 11:18:55 am »

Tommy don't do it,,,that's how I got my hep c!!!! Don't take the chance with a tattoo. Unless you make it a temporary one. LOL....After living with this nightmare for 30 years, I am not getting it back!!! I did think about having a shirt made though

Scout

gnatcatcher · « **Reply #2640 on:** October 01, 2015, 12:06:08 pm »

Quote from: beto on October 01, 2015, 10:41:16 am

. . . I have been to other forums and I truly believe our energy, support and perspective is special right here at Hep C central. . . .

So Gnatty, you know I really sucked in high school and was a long way from being a valedictorian...who would have expected me to me at the top of my class in hepatitis C school

Quote from: Scoutdoy on October 01, 2015, 11:18:55 am

. . . I did think about having a shirt made though . . .

Yes, the members of these Hep Forums are remarkable for the genuine community we have formed. We've been really real with each other, even those of us using pseudonyms so that we could be frank on the web about diagnoses, etc.

beto, in case you didn't take Latin, a valedictorian is literally the person who says farewell to _____ (in this case, to "those tiny nucleotides wrapped in a protein shell").

Scout, great idea about the shirt. Much earlier in this thread, (http://forums.hepmag.com/index.php?topic=1653.msg15535#msg15535), Katie said she was turning her three empty bottles into a mobile, which is also a great idea, but your idea is much more public and thus might educate some people.

Gnatty

KentAmos · « **Reply #2641 on:** October 01, 2015, 03:13:27 pm »

Well this is my first time here and I have been reading a LOT and learning a little more about what is going on. I have now been on Harvoni for 7 weeks and will be off by Nov9th so I then go and get my blood test.
I really have to say that I started working on my treatment last Oct and after being turned down by BCBS 3 times I got approved through Giliad ( thank you).
I have to say that I am way out of the loop. I do know that I get Hep C back in 1993 with a blood transfusion but I have never had any issues with it ...so far. I waited as the other treatments looked horrifying and I figured something would come along...yea!!.

I have had no side effects that I can see. I do ache in my joints and I feel a little bloated(swollen) but other than that pretty good overall. My doc was little or no help with getting the treatment and I have pretty much been winging it along the way. So I hope when I go and get my blood treatment in Nov I come in clean.

Scoutdoy · « **Reply #2642 on:** October 01, 2015, 03:17:18 pm »

Kent, have you had any blood tests since you have been on treatment? I haven't had any side effects to speak of either, except more energy and less pain in my joints. Good luck and the rest of your time will go by fast.

Scout

kbalcom · « **Reply #2643 on:** October 01, 2015, 03:29:42 pm »

Hello everybody!
I am new to the site. It's wonderful to see people come together and not let this disease get them down. I am Hep C positive but I am on Horvoni. I'm on my second month and I'm having the usual nausea, headaches and SERVERE insomnia But the worst is I'm having trouble breathing. Keeping breath in. My lungs burn most the time mlnow for about a week now. I went to the ER and he thinks it's because of how I'm eating combined with 15 pound weight gain... Im 145 pounds and I dont think I eat crazy... I've never been this big before but I've never experienced anything with my lungs until I started Harvoni. I was wondering if anybody else has anything happen with their lungs during being infected or on Harvoni. Just because it doesn't sound right to me. Im thankful for this site and people who are brave enough to be open. Every each one of you are in my prayers And I look forward to getting to know you. God Bless.

Katie

KentAmos · « **Reply #2644 on:** October 01, 2015, 03:47:10 pm »

No SCOUT nothing I am flying blind but I did do a lot of reading. They told me to do this and come back once I was through and get a blood test. HAHA.

Scoutdoy · « **Reply #2645 on:** October 01, 2015, 04:38:57 pm »

Wow, that's odd. The only reason I say so is because people make mistakes. They are only human. When it comes to my life or my family, I know everything that is going on. The mistakes I have found have literally saved my life. That's your deal though, and if you're comfortable with it, that's all that matters. Good luck to you, I am sure you will beat this thing

Scout

Mugwump · « **Reply #2646 on:** October 01, 2015, 05:02:31 pm »

Quote from: kbalcom on October 01, 2015, 03:29:42 pm

Hello everybody!
I am new to the site. It's wonderful to see people come together and not let this disease get them down. I am Hep C positive but I am on Horvoni. I'm on my second month and I'm having the usual nausea, headaches and SERVERE insomnia But the worst is I'm having trouble breathing. Keeping breath in. My lungs burn most the time mlnow for about a week now. I went to the ER and he thinks it's because of how I'm eating combined with 15 pound weight gain... Im 145 pounds and I dont think I eat crazy... I've never been this big before but I've never experienced anything with my lungs until I started Harvoni. I was wondering if anybody else has anything happen with their lungs during being infected or on Harvoni. Just because it doesn't sound right to me. Im thankful for this site and people who are brave enough to be open. Every each one of you are in my prayers And I look forward to getting to know you. God Bless.

Katie

It is really important to be easy on yourself during treatment for HCV, Harvoni included. But even more so for the older treatments. Rest, good hydration, moderate exercise and a balanced diet seem to be the very best way to deal with treatment. Even some medical professionals are not up to speed on this treatment yet. So some of us are indeed winging it.

If your blood pressure increases then please try to do things to relax, my BP over all did increase at about 14 weeks during treatment but in the last 5 weeks of 24 it came down to a more safe level. You will find that this treatment does effect everyone differently. Be careful with what other meds you take and consult the nursing hotline at Gilead if you are at all unsure about a drug that you are either prescribed or have purchased over the counter. If you have cirrhosis this includes especially any high dose nsaid based over the counter meds like some cold remedies that include ibuprofen or aspirin in large doses are not a good thing at all.

There should have been an info sheet included with the med that has the contact number for nursing support and side effect reports. I encourage you to use it and carefully report your problems because this it the first time I have heard of anyone breathing difficulties during treatment.

Take good care of yourself and I truly hope you and others finding difficulty reach a balance to get through as easily as possible. We all cry inside when we see other people either relapse or stop treatment so big hugs and do the best you can and I know you will knock this disease to hell where it belongs!

Eric

Bree · « **Reply #2647 on:** October 01, 2015, 06:47:43 pm »

Katie and Kent ~ Welcome to the forum and to the wonders of Harvoni!

Katie, I would talk to your liver specialist about the breathing thing. Rapid weight gain can cause breathing issues upon exertion, but not sure on the extreme issue (burning, etc.) you are having.

Kent ~ Best of luck to you on your journey!

I just completed Harvoni 4 days ago... feeling really optimistic. That's a great side effect!!!

kbalcom · « **Reply #2648 on:** October 02, 2015, 03:17:10 am »

Eric,
Thank you so much for replying. I hope this shows up because ive never been on a forum before and im still learning on how this works lol

but your reply really did give me comfort, I was starting to freak out... But I do forgot how young this drug really is and to think that maybe this is just a side effect for me really did help. With the er saying that my tests were OK, your reminding this and having a doc appts. made, I'm in better spirits.

I did think it was going to be a more Hands-on doctor though. I do want to get a nutritionist. I'm going to look into that. Thank you so much for Your guidance. I'm really glad I found this forum. I've lived with this for almost 4 years now and have only told literally my doct or and my counselor/therapist. So it is really nice to be able to share.. Really nice. Lol Hopefully we will speak again in the future. Have a great night, sleep well and have an incredible tomorrow!
O And Bree thank you for welcoming me and also with the great advice! I'm definitely going to do that.

Thank you so much. God bless

gnatcatcher · « **Reply #2649 on:** October 02, 2015, 11:14:23 am »

Quote from: slats1056 on October 01, 2015, 10:52:25 am

. . . One thing is sure I do not fear death. I will cheat the reaper as log as humanly possible though!! In that time I will attempt to make up for the lost time from My early adulthood ,through thirty six plus Year with My wife , raising three wonderful children ( who I am extremely proud of ,Yet don't seem to tell them often enough ) , two beautiful grand kids . As well as the many sacrifices only You people here can begin to understand. Maybe I should start with apologizing for My distant attitude to all that have been close to Me over the years. ( Probably better read as being an asshole that pushes people away, at least I have been told that. Not My words! )
Beto got Me to thinking , all of the positives are that much sweeter and enjoyed more so in spite of the negatives!!! Maybe it is time I tried to break down the wall that I have built around myself in the last forty plus years! Live more , love more and be more compassionate to those close to Me and to My fellow Man!!! . . .

Bravo, Tommy! While you're letting Harvoni heal your liver, you've been learning how to heal your heart. Glad you don't fear death. Also glad you're in no hurry. My own "ideal death" is this: my metaphoric heart has a separate room in it for each person who seems to want to spend time at Gnatty's B&B. It's amazed me that so many rooms can be added on to one beating human heart without the whole thing collapsing from the weight of everyone's traumas. But the time will come when there is simply not enough room in my body to contain that ever-growing heart. That'll be the moment for the inevitable metamorphosis.

Welcome, KentAmos and Katie.

Gnatty

slats1056 · « **Reply #2650 on:** October 02, 2015, 01:05:01 pm »

Katie & Kent, Welcome to the World Wide Harvoni Travelling Circus!!! Glad You are here. Hate it that You had to come!
Kent, I would ask the Doc in charge of Your treatment if copies of Your labs are available. Helps so You know where You stand. Glad the Sx's are minimal for You.
Katie, That avatar cracks Me up! Love it. Sorry Your having a rough time with the Sx's. Hope they let up for You. I had a rough time the first 8 weeks , but they seem to have let up approach EOT. FOUR MORE DIAMONDS LEFT FOR ME!!! I have not had any breathing problems. Best to have that checked out to be on the safe side. As long as the Doc isn't worried about the weight gain , don't worry about it right now. Concentrate on the treatment.
Just remember, when in doubt ask question! Stay hydrated. Try to eat right. And above all try to laugh as much as possible!!

Gnatty, I am picturing a Heart Shaped Resort Called Gnattys' Place ! With a flashing Neon sign that reads---- WE ALWAYS HAVE ROOM FOR YOU!!!!!!! That way even when Your physical form departs , Your Spirit will live on forever. BTW, Premises are always under construction!!

gnatcatcher · « **Reply #2651 on:** October 02, 2015, 07:15:11 pm »

Quote from: beto on October 01, 2015, 01:05:17 am

Hey all,

So I had got some disturbing and painful information today that left me a bit out of it and depressed...so I high-tailed it to the docs office and asked for a copy of my recent labs. Every time I started back over the negatives in my mind I just looked at my labs. I don't think my liver enzymes were that low before hep. That beautiful word "undetected".

Interesting. As I approach that final pill that hopefully pounds the last nail in the coffin of those tiny nucleotides wrapped in a protein shell, I realize that those little hep buggers were a part of me, mingling with my cells, communicating with my DNA and living in a sort of synergy with my being for 40 years. Aint gonna miss em' but, so strange to think that they had a big hand in defining me. I can't deny that they were part of who I was and therefore part of what I have become.

The person today that was the bearer of bad news was probably amazed at my strength dealing with the information. It occurred to me that perhaps the silver lining of this disease is that it has made me...and us...strong people. People that do not quit. People that never relented against a virus that was taking our brethren and beating our treatments.

Bravo my fellows of the greatest graduating class of our lives. We are actually doing this.

Beto, I'm sorry that today you're dealing with yesterday's bad news just when you would otherwise be celebrating the end of treatment. I hope having the printout of those labs continues to elicit your inner strength. Beto ~--> to Be

Pulling for you,

Gnatty

Squiggles · « **Reply #2652 on:** October 06, 2015, 08:02:18 pm »

I started Harvoni 11 days ago. I take it at 8AM with a large glass of water and I usually eat breakfast soon after. I had a mild headache a couple of days- not even enough to take some Tylenol. Other than that, I would say I am side -effect free. So far. I feel clearer headed at times and also a bit less fatigued. Is is possible I am only imagining this? I do have a good imagination. How soon should one begin to notice something getting better? (thoughts clearer, less fatigue etc)

gnatcatcher · « **Reply #2653 on:** October 06, 2015, 08:16:40 pm »

Either a lot of us imagined it, or it's for real. That extra energy some of us call the "Harvoni High." While I was on Harvoni, I also had faster response times. Enjoy!

Scoutdoy · « **Reply #2654 on:** October 06, 2015, 08:19:51 pm »

Sqiggles, I would say about day 8 I started feeling better and had a burst of energy. My joints started feeling better and my quality of sleep started improving

Scout

Else · « **Reply #2655 on:** October 06, 2015, 08:37:37 pm »

It's for real, Sqiggles. Harvoni really does work that fast. Not your imagination! Enjoy the new you.

Katie · « **Reply #2656 on:** October 06, 2015, 09:27:55 pm »

Just to let you know the Harvoni High was the best I felt in decades but after the last pill....it vanished. In fact my fatigue was worse than before treatment. Slowly I am getting energy back. There are many other benefits such as my insomnia and brain fog is gone, which I suffered with for years, but I am really hoping to get my energy and get up and go back. I stopped treatment the end of February so it's been some time. This isn't the case for everyone but wanted you to be aware of it.

Katie

perineuro · « **Reply #2657 on:** October 07, 2015, 04:11:37 am »

Hi. I just started Sovaldi + Ribavirin on Sept 14 and this past week (HCV /w cirr, Gtype 2b) I have had a lot of difficulty with breathing. It is hard to inhale deeply and exhale. Its as if you just can't quite get there. But as you go through the day, or days, and you go for that deep breath in and your lungs feel heavy and painful... and "it works" you got your breath... you feel so relieved. But it is a desperate struggle and I did not know anyone else was experiencing this as well. I also have Peripheral Neuropathy and I think that adds to the extreme difficulties of just trying to breath, chew your food and swallow, and laugh, and try to remember if you just took that last pill or not.... I know this will go away,,, and I can't wait.... but I also think we are all learning from each other here. and probably making medical history.

beto · « **Reply #2658 on:** October 07, 2015, 10:49:52 am »

I posted on this subject elsewhere last night, but since I have joined the aftermath brigade, I feel obliged to post here as well. Though I have not fallen "off a cliff" as reported by Kim and others, my body is not right either. I wake up achy which is something I have not experienced for a while. I feel like I am fighting something part of the time, achy, week, slightly feverish. I have some kind of urinary tract infection (which might be causing other issues) that just developed that may coincide with the withdrawal.

Yes, I wonder if they are in essence withdrawal symptoms of sorts. We are on a powerful drug that becomes our immunity force and a part of our biology for 12 to 24 weeks. Then there is the factor of HCV most definitely a part of our biology for decades, gone in a flash.

I love to speculate (and that is all that I am doing here), our immune systems may have to find a rhythm again. Also, other viruses like herpes, EBV may have set up shop and are now face a renewed (or renewing) immunity.

Whether there is any validity at all for those ideas...something does seem to be happening post treatment, and believe me I am not complaining...unless I relapse...and then I will complain plenty

I am going to call Gilead to find out about reports. We can't forget we are still guinea pigs...lucky ones though.

gnatcatcher · « **Reply #2659 on:** October 07, 2015, 11:09:21 am »

Like Beto, I am recently post-Tx. Beginning when there was very little Harvoni left in me (based on its half life), I started experiencing a thoroughly achy body and began needing enormous amounts of sleep. I have done the same exercise routine for years; during treatment it was easier than before treatment, but post-Tx, the strength and flexibility exercises have become noticeably more difficult than ever before. No fever or UTI to report.

Gnatty

Bree · « **Reply #2660 on:** October 07, 2015, 03:33:58 pm »

I'll weigh in on 10 days post treatment. Finally starting to sleep about 6 to 6.5 hours. Wake up often but able to go back to sleep. Been trying to walk everyday. Yesterday was kind of weak. My aches have diminished. I was having neck, shoulder discomfort (which is not unusual for me anyway but it felt increased so I wasn't sure it it was related or just me). I've noticed that's mostly gone! Loving that part.

I'm just getting over a bug (I think it was a bug because my son and others were sick and it started a few days before treatment ended). They got better...but for me, I'm slowly coming out of it so hard to tell what is from what.

Body feels warm like slight fever, to the point that yesterday I was thinking if this doesn't subside I'll need to go to GP. Also a little light-headed. I still think I'm starting to feel a little better each day. It comes and goes. Still a few highs (mostly gratitude highs)... I'm trying to expand on the feel good stuff as much as I can.

I also think that it's a matter of giving it time. We've been through a lot and it takes time for the body to re-acclimate to it's new system. Miraculous bodies we have. Still in awe.

beto · « **Reply #2661 on:** October 07, 2015, 04:06:35 pm »

Bree, Gnatty

I think we are all on our way and I am sure we will be kabitzing over this for weeks to come. We all are have similar post treatment experiences. I called Gilead and spoke with a very nice but not very informative nurse from there. It is like they have to be so careful with information and speculation. We are the ones that seem to have the most info with respect to the experience itself.

Bree · « **Reply #2662 on:** October 07, 2015, 04:47:03 pm »

I called Gilead when I first started Harvoni and it was the same thing with the nurse. Nice but only could quote the pamphlet. I never called back.

Katie · « **Reply #2663 on:** October 07, 2015, 05:14:23 pm »

Actually I called Gilead about the post side effects and they actually contacted my doctor for the information as well as calling me back for more details. I was impressed with that. Might just depend on who you talk to but that wouldn't seem very efficient if they are collecting data on after treatment complaints.

Scoutdoy · « **Reply #2664 on:** October 07, 2015, 05:59:09 pm »

Katie, it makes sense kind of about the post tx...they have what they want about the during treatment info...but the post effects can last for years and the more information they gather, good or bad, will be used for long term studies. I may be wrong, but that is what it sounds like

Scout

Katie · « **Reply #2665 on:** October 07, 2015, 06:37:48 pm »

I agree Scout. Others haven't been pleased with Gilead's respose when they called so I wanted to share what I found.

I would think the post side effects would be something everyone would want to be informed of. Doctors, insurance companies (

,Gilead and most of all the patients. It is difficult enough to have a big drop off in how you feel after treatment when all your bloodwork comes back perfect in every way. They tested me for thyroid, nutrition, vit D and it was all fine. I was to the point of hoping they'd find something as 6 months is a long time to feel rotten and have them tell you you're fine. Especially worse than before treatment. I really would like to know exactly what was in Harvoni that picked me up to the level of high energy, motivation, good spirits and the ability to find JOY in the little things. All of that is gone and worse than before. It was like a taste of the good life and then snatched away. HA!

I am doing OK and glad I am healthy. Knowing that gives me an optimistic view that I will get back to being my productive self. Life is good, but I can't wait for it to be better!

Katie

coastal girl · « **Reply #2666 on:** October 10, 2015, 06:50:26 pm »

Hi, Is a lowered platelet count something others have experienced. My doctor sent me a very vague results letter..I'm pretty fed up with this doc. She says viral load is essentially undetected...what, give me a number...the results belong to me, stop hoarding them doc! No #'s on my ast or alt either...says there is no essential change in labs except for platelets going from 104 to 91. And essentially undetected viral load...how can my viral load be almost cleared and my enzyme levels stay the same...doesn't make sense ... any input?
thanks,

Scoutdoy · « **Reply #2667 on:** October 10, 2015, 06:56:31 pm »

Get a copy of your labs,,,,that's like someone saying I am a little pregnant...you either are or your not....

Scout

coastal girl · « **Reply #2668 on:** October 10, 2015, 07:09:05 pm »

Yes, I have been collecting copies of my health records ever sense being diagnosed with HCV in 2006. I was planning on picking them up on Tuesday as that is when I will be heading thru town. I just happened to receive her letter first...looks like a form letter they send to all of their patients...all except the lowered platelets!
I will be writing her a note about my disappointment in her letter of test results. She should know better, that I for one, would not be content with this vague description of results. I have actually had to school her on a few of the test I received...she said "oh I wish more patients would be more knowledgeable of their conditions as you are" then send me that letter!!!! Grrr

It's all good though...I'll get thru this treatment for which I am very grateful and start on getting my liver tuned back up...I'm so excited for that time to come!!
I have a plan

KimInTheForest · « **Reply #2669 on:** October 10, 2015, 07:40:23 pm »

Hi Coastal Girl. You'll know all you need to on Tuesday when you pick up copies of your lab results. It's certainly true that each of us needs this data in our own possession, not filtered through our doctors with vague descriptions of this and that. Each of us needs to know our numbers, and also see what the reference range for that test is, since labs differ. That way we can know how far out of range our numbers are. Good luck!

kim

KimInTheForest · « **Reply #2670 on:** October 10, 2015, 07:52:00 pm »

Quote from: coastal girl on October 10, 2015, 06:50:26 pm

Hi, Is a lowered platelet count something others have experienced. My doctor sent me a very vague results letter..I'm pretty fed up with this doc. She says viral load is essentially undetected...what, give me a number...the results belong to me, stop hoarding them doc! No #'s on my ast or alt either...says there is no essential change in labs except for platelets going from 104 to 91. And essentially undetected viral load...how can my viral load be almost cleared and my enzyme levels stay the same...doesn't make sense ... any input?
thanks,

I think you are still okay (as in not in danger) at a platelet count of 91, if I am reading this chart correctly:

http://www.biooncology.com/clinical-trials/clinical-endpoints/toxicity-criteria

That seems to place you in "Grade 1 Toxicity", which is "mild with no intervention required". The lowest my platelets dropped during treatment was to 122 giga/L (also Grade 1 Toxicity). No one was worried. I got the impression I would have to drop to 30 or something before there would be real concern.

(I think 75,000/mm^3 is equivalent to what we are calling 75.)

best,
kim

coastal girl · « **Reply #2671 on:** October 10, 2015, 08:06:08 pm »

thank you for the link Kim...feeling better about platelets.
So I guess lowered platelets are common among us on TX?
Not used to these sudden drops in numbers...have always used alternatives instead of pharms.

KimInTheForest · « **Reply #2672 on:** October 10, 2015, 08:22:43 pm »

Quote from: coastal girl on October 10, 2015, 08:06:08 pm

thank you for the link Kim...feeling better about platelets.
So I guess lowered platelets are common among us on TX?
Not used to these sudden drops in numbers...have always used alternatives instead of pharms.

I think lowered platelets are not uncommon on Hep C treatment. I think also our platelets may get stuck in our spleen when on treatment, so they are not circulating in our blood.

best,
kim

gnatcatcher · « **Reply #2673 on:** October 10, 2015, 08:51:49 pm »

Having actually had a separate disease (ITP, with the T standing for Thrombocytopenia) of extremely low platelets before I got HCV, I can tell you that the telltale symptom was purple spots all over my legs. My platelet count was down to 1,000 (where 150,000 was bottom normal). That was in 1970, and I'm still here

Scoutdoy · « **Reply #2674 on:** October 10, 2015, 09:05:24 pm »

Gnatcatcher I was just looking at your sat and alt in May..wow they were pretty high...could you feel the difference when they dropped so quickly?

Scout

coastal girl · « **Reply #2675 on:** October 10, 2015, 09:33:34 pm »

Gnatcatcher, I believe ITP may be the condition my sister had a couple of years ago. She was hospitalized for a couple weeks if I remember correctly with extremely low platelets as you did. It was a very scary time for her and our family. She seems to be doing fine now! So grateful for that

Can't wait to get my hands on my test results on Tuesday and see my true viral load and other #'s

Scoutdoy · « **Reply #2676 on:** October 10, 2015, 09:55:04 pm »

I am gonna guess your viral load is gonna be like <15 detected. Considering your starting at almost 13 million that's huge. I was at 13.9 million and was <12 negative, but they said "minimal" detection like your letter said. I was confused too. Never did find out why it said negative. I had a different lab do the test 2 weeks later and it came back undetected. Harvoni is powerful stuff. You will be cured and so will I.

Scout

Scoutdoy · « **Reply #2677 on:** October 10, 2015, 09:57:47 pm »

Oops I have the little arrows pointing the wrong way on previous text. Sorry. Should be >15 and >12. Jeez forgot my math. Less than. Ok now I have confused myself...lol...

Scout

gnatcatcher · « **Reply #2678 on:** October 10, 2015, 10:09:55 pm »

Quote from: Scoutdoy on October 10, 2015, 09:05:24 pm

Gnatcatcher I was just looking at your sat and alt in May..wow they were pretty high...could you feel the difference when they dropped so quickly?

Scout, the only thing I felt was the surge of energy from the Harvoni. Never during the almost 44 years of HCV did my liver hurt; increasing fatigue was my only symptom. Strange, huh?

Katie · « **Reply #2679 on:** October 10, 2015, 10:16:02 pm »

You now are saying greater than 12 or 15 which is >12 or >15. They usually are <12 or <15 which is less than. That is the sensitivity of the test where they can't count below the 12 or 15 but may still be detecting a few or just fragments of the virus or if it states specifically negative or undetected the meaning is no detection of the parasitic virus.

I don't want to confuse anyone but if you have questions on what I wrote let me know and I will try to explain it better.

Congratulations as you are both on the path of a cure, no matter what!

Katie

Scoutdoy · « **Reply #2680 on:** October 10, 2015, 10:16:45 pm »

I think the energy is a huge symptom. A friend of mine died from cirrhosis and he didn't really complain of pain but the fatigue was overwhelming for him. Could barely lift up his arms. He turned orange and at the end retained a ton of fluid that made him uncomfortable, but no excruciating pain.

Scout

gnatcatcher · « **Reply #2681 on:** October 10, 2015, 10:17:33 pm »

Quote from: coastal girl on October 10, 2015, 09:33:34 pm

Gnatcatcher, I believe ITP may be the condition my sister had a couple of years ago. She was hospitalized for a couple weeks if I remember correctly with extremely low platelets as you did. It was a very scary time for her and our family. She seems to be doing fine now! So grateful for that . . .

Yeah, looking down and seeing the purple spots all over my legs was scary. So was realizing that the doctor I saw then didn't know what I had. When it was diagnosed a couple of days later, just having a name was a relief.

Glad your sister's doing well. I assume medicine cured her. Unfortunately, I didn't respond well enough to the medicine, so they took my spleen out and the transfusions gave me HCV, something that of course wouldn't happen these days.

Scoutdoy · « **Reply #2682 on:** October 10, 2015, 10:19:16 pm »

Thanks Katie, I couldn't remember which way the arrows went . Hope I didn't mess anyone up,,,except myself of course. May have to join my 7 yr old in math class next week at school

Scout

Katie · « **Reply #2683 on:** October 10, 2015, 11:06:32 pm »

Hey Scout....no biggie. You might find the New Math more than you bargained for! LOL

Scoutdoy · « **Reply #2684 on:** October 10, 2015, 11:28:05 pm »

No kidding Katie, I already know I can't pass the new 5th grade division section. My daughter brought that home one night and I shared it with my husband and he said "what the hell is that" "it's the new way they do division" we couldn't do it, and we have college degrees..how sad is that?

Scout

Katie · « **Reply #2685 on:** October 10, 2015, 11:49:20 pm »

I find it really amazing that they took a very up front way to do calculations and complicated it. The more you have to write down the more likely to make mistakes. I understand it's good for them to see how things break down but that is why we have multiplication tables. I think it is a huge mistake and is going to compromise our children with their problem solving skills. I would certainly show your kids the correct way to do math so they have a check for what they do. The more they know the better. My personal opinion as a biologist who loves math!

Katie

Scoutdoy · « **Reply #2686 on:** October 11, 2015, 12:39:01 am »

Katie, I was summoned to the school because we showed her how to do division the old way (in 3 steps instead of 14) and at the conference we agreed that she would learn both ways, I would teach one way and they the other because of exactly how you put it, the problem solving skills are going to be obsolete. uggggg that was the first year this math was started in our schools here. It's ironic that that 5th grader is starting med school at KU next fall in research medicine. Who knows maybe she will study HCV or HIV ... October 18 is my last pill day! And getting blood work done the next day. I feel kind of nervous about the last blood work..I have no idea why. Every muscle twitch or any little odd feeling and I think to myself oh gosh,,,did it come back? I haven't thought this way the whole treatment until the last few days. It's strange

Scout

Scout

Else · « **Reply #2687 on:** October 11, 2015, 12:57:36 am »

Quote from: Katie on October 10, 2015, 10:16:02 pm

You now are saying greater than 12 or 15 which is >12 or >15. They usually are <12 or <15 which is less than.

Math tips from a liberal arts major: the "mouth is always eating" in the larger (greater) direction. < nom nom nom

Hey, worked for me or I'd never have gotten that straight.

Katie · « **Reply #2688 on:** October 11, 2015, 01:02:33 am »

Hi Else...That's a new one on me, but whatever it takes.

Happy to hear you finally got the approval! Thank the universe!

Katie

Katie · « **Reply #2689 on:** October 11, 2015, 01:11:38 am »

Scout: I think being apprehensive at the end of treatment is pretty normal so just remind yourself on how good you've been doing and what the results for others has been. I wasn't totally convinced I had it beat until SVR24. I just don't trust those little, nasty, parasitic viruses, no matter what anyone says. They are like aliens! I actually was detected <12 at EOT which was shocking as I was a strong responder and by 7.5 weeks post treatment I cleared it and remain clear. There have been several of us with the same scenario so never give up hope. If the count keeps dropping and is a small count your chances are good so keep getting tested! If you have viable viruses lurking about they will replicate and the count will increase, as that's what they do.

Good night and it sounds as if you have a brilliant girl. We need more Women in Science!

Katie

beto · « **Reply #2690 on:** October 11, 2015, 12:31:45 pm »

The waiting game. It sure puts the nerves on alert. Scout, take it from Katie...having to get through treatment to find you are detected, has got to suck. Most will not have to go through that roller coaster ride. I have been following posts for some time now and have seen posts at the moment the poster got the news. Then down the line the excitement to find that their bodies took care of business and they clear.

I recently (one week ago) finished tx. Saying goodbye to those little saviors is tough and waiting for the final blood draw even harder. The good news is that the virus, if not completely gone (usually is) is knocked back so far that our immune systems can finish the job. I know it is hard to trust an immunity that let you down before, but we have a lot of reasons to keep the faith.

Katie and others have proven that even a "<12 detected" can still be a hopeful sign. Katie and others are the pioneers of that phenomenon. Another reason to stay on this forum.

Thanks to all of you "trailblazers"

coastal girl · « **Reply #2691 on:** October 14, 2015, 01:50:38 pm »

Oh my Goodness, so excited!!!!!
I picked up my test results yesterday and my viral load (4 week test) is still detected but it went from almost 13,000,000 to 64!!! my ast from 131 to 34 and my alt 97 to 17! platelets drop from 104 to 91 but I feel that will change back after Tx
we actually went on a road trip yesterday and I had to keep looking at my test all day at one point I gave it kisses...Life is GOOD!!!
I will be updating signature shortly...whoo hoo!

Katie · « **Reply #2692 on:** October 14, 2015, 02:06:05 pm »

You are on your way and a STRONG responder. Congratulations!!!!!

Katie

Else · « **Reply #2693 on:** October 14, 2015, 03:53:45 pm »

Fantastic news, coastal!

hope2bcured · « **Reply #2694 on:** October 14, 2015, 04:15:46 pm »

Quote from: art1951 on October 25, 2014, 01:43:09 pm

I am new to the forum and started taking Harvoni on October 17th. Is anyone else taking it and experiencing any side effects? I am getting daily headaches and fatigue when I first take the pill in the evening. The fatigue seems to be letting up during the day. I was experiencing nausea for the first few days but that seems to be better now.

I have 1b and my liver is f3 with a viral load of 4.7 million. AST 75, ALT 93

Thanks, Art

Hi Art,

I just finished Harvoni 4 weeks ago. I had very minimal headaches, that didnt even require anything. I actually, had some increased energy when I first started, had a short period where some of my hair was falling out (that stopped) and then I developed some cardiac issues, so do keep an eye on your blood pressure. Another friend of mine, never had blood pressure issues and he had a stroke 3 weeks after taking the Harvoni. And he was a health nut prior, never had elevated blood pressure. So do keep an eye. I had high blood pressure but, it was controlled with meds, but, on the Harvoni, my blood pressure sky rocketed. I ended up having to go on a heart monitor for 2 weeks, just recently finished with that, and am waiting to see cardiologist again, but, I think thats simmered down now, because I am not getting racing heart or shortness of breath anymore.

My biggest complaints were in increased brain fog, before that started my head felt like it was getting clearer. Now the brainfog is getting a little better. But, I have lots of liver discomfort and unbelievable fatigue, was never this fatigued in my life. My Dr said it can take anywhere from 6 months to a year to feel better.

We have to figure, a medicine this potent, is going to cause some changes in the body, as well as changes when the virus is gone, the livers have been compromised for so long its going to take some time to heal.

I took Harvoni for 12 weeks genotype 1a never took a treatment before and have had HCV since 1980. My 8 week blood test while on it was not detected. And I just took my 4 week post treatment pcr yesterday, so I will soon.

What I have gleaned from my experience, is that people have different side effects, the most important thing I can suggest is drink lots and lots of water.

Hang in there, you will be fine.

beto · « **Reply #2695 on:** October 14, 2015, 08:14:05 pm »

hey costal girl...rock on. Feels great to see the numbers drop. Way to go.

Art- the treatment is a very mixed bag. The 1st 2 weeks are the toughest, but even then there are good days usually. I had dizzy spells and a heavy feeling...some fast onset depression, mixed with amazing energy spurts.

Soon2bcured is right about these meds. Dropping from high VL to zip overnight takes a powerful drug. The discomfort, however, is not like the old meds. Also, it is widely reported that EOT can be another challenge. I am nearing 2 weeks EOT. Not bad for me but, moody, and a little quick to be agitated over things small...dropping f bombs over where "ah shoot" would have sufficed.

coastal girl · « **Reply #2696 on:** October 14, 2015, 09:19:08 pm »

Thank you all, yes, It feels great to have numbers drop!! I just know in my heart that I will clear this virus...then it's onto reversing liver damage which I also know in my heart and experience in holistic healing will also happen!!!!
I have been very fortunate in the side effect area also..harvoni high has been it...except day 3 I was so spacey it was frustratingly comedic!!!! Thank goodness that only lasted a day.
I know there are many out there who are suffering and I am so sorry for your pain....On a different note I find myself very envious of the people without liver damage and catch myself pouting, thinking "its so unfair" but it is what it is...I have much hope for the next 30 years of my life...oh, BTW I'm a 55 year old female...guess I should put that in my stats

Plan for the future
1- clear virus...no worries
2 - repair liver..achievable
3- live the next 30 years grateful for everyday and love love love all..very achievable!!!
I wish the same for the rest of you all.. of course you younger ones get more years

beto · « **Reply #2697 on:** October 14, 2015, 11:41:52 pm »

That's the attitude costal girl...

I feel the same way. I have posted, and others have posted, cirrhosis reversal stories and studies. I will not bore everyone again with my hopeful rants on that subject. The idea to "just know" is a powerful one. We have indeed arrived at a place of hope that we never expected and there are a bunch of like minded folks at the junction to share with. Life is good.

I understand the envy thing because it is kind of random, However, one miracle at a time hey?

coastal girl · « **Reply #2698 on:** October 15, 2015, 12:29:21 am »

HI Beto,
You may be interested in this link...here is the conclusion from "A Proposal From The International Liver Pathology Group"....
"We propose that use of the word cirrhosis should be discontinued and that each patient with chronic liver disease of advanced stage should be provided treatment on the basis of clinicopathologic correlation of all available findings (Figure 1). This proposal is consistent with our current understanding of the evolution of chronic liver diseases and will also remove an unnecessary psychological burden from patients. In addition, research into the pathogenesis and evolution of chronic liver diseases will be facilitated if an etiology-based perspective extends all the way to the end stage. In the past, ignorance was a good reason to lump the advanced stages of different liver diseases together; the opposite may prove to be more useful in the future."
Copyright© by the American Society for Clinical Pathology
Here is the link, interesting read http://ajcp.ascpjournals.org/content/137/1/5.full

Happy reading

Lynn K · « **Reply #2699 on:** October 15, 2015, 01:09:28 am »

Thanks Coastal Girl

Very interesting and hopeful information.

May those of us diagnosed with cirrhosis and cured of hep c receive a revised diagnosis of advanced stage liver disease, with features of regression.

It doesn't sound that great but would sound like good news to us.

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