Hep C Discussion Forum

Congrats GG!

 Blessing to you

Alison

I have some good news to share from our member and good friend GG! (JustaGirl) She just contacted me and is overjoyed to report her EOT bloodwork has come back and she finished her 8 week course of Harvoni with the golden result of UNDETECTED! 

Congratulations, GG, you made it. In 12 weeks the final bloodwork to confirm SVR will be done. 

She asked me to share her message with you! I think she's a little shy   I'm so happy for you GG and pleased to share the good news!

heiiooooooo  TIG  AS OF TODAY  AT 8 WEEKS ON HARVONI  I HAD MY BLOOD WORK DONE ON FRI AUG 1  MY PULMONARY  TEST MY RESULTS  SHOW NEG TO HEP C  !!!!!  IN THREE MONTHS I GO BACK TO GET TEST AGAIN JUST TO MAKE SURE  IM STILL HEPC FREE  IM SO HAPPY AND RELIEVED  THE FEAR IS GONE WHICH WAS  WEIGHING ON MY MIND 247 THE SIDE EFFECTS WERE VERY  MINIMAL I KNEW THE DRUG WAS IN ME  BUT WORTH IT!!!! OMG  IM THE  ONE ON THE HARVONI  COMMERCIAL "THEY SAY MOST CURED AFTER 12 WEEKS  SOME AFTER  8 WEEKS " IM THE SOME !!!!! OMG   MILLION DOLLAR MIRACLE DRUG  AND  THE PHARM COMPANY  WOULD HAVE GAVE ME THE 12 WEEK IF I WOULD HAVE NEEDED  IT WOW .. GOD WAS LOOKING OUT FOR ME  thank you so much  you and  jimmy  and canuck were so kind to me i dont know what i would have done without you all xxoo  im crying right now .. thinking  about  it.. how far ive come  .. thank u  !!!!! if you could put this post public so the others can read id be so appreciative 

Be careful calling yourself, Odd! Somebody might agree with you, lol!   

Vancouver, WA or Canada? Canada is on fire, be careful up there. Canuck can tell you all about that hot topic, R-R-R!   Sorry, it's been one of those days. The bakery is one of my favorite places. The aroma when you walk in the door is heavenly. Nothing quite like it! You shoulda opened the box though!

Hey all,

I hope you're all having a lovely summer, today we went to the zoo, it became a bit wet, so it became a zoo with a jog. :D

My liver went lovely on treatment, after I had some twinges, and now I'm not sure if I even have a liver. :P

I went through several things to figure out what my body does and doesn't like. Since my liver or liver area is nice and relaxed I figured out what my body hates. It maybe a case of a good diet tweak!

My body loves exercise, it keeps everything flowing. Sitting too much is a cause for sluggish digestion.
Fizzy beverages, they just are not good at all, I found they irritated my guts a lot.
I hate to say it, but meat. I now have a much healthier and happy gut without meat which means increase in a plant based diet - happy liver and guts and everything smells healthy and sweet. 
I added some live pro and pre biotics for a small time and viola. I have now no twinges or issues at all.

Perhaps we have some element of tolerance changes after years of infection. But, I think its more to do with IBS, bloating and I've had issues with gallstones in the past. I too think we can psychologically give to much credence to Hep C than is deserving. 

PS: I had twinges and I have no fibroses according to my biopsy and scans. I'm also SVR nearly a year. :D 

Thanks Tig - I do know the liver itself doesn't cause pain so I suppose it was just overworked from all the physical work I did today, and because of the fibrosis, swelled up some. I still get blood tests every 6-9 months, so will have an indication if something is going on, although I know I have a damaged liver and should know its not ever going to run at 100% again. As long as it finishes the race! Still feel much better than before and still grateful for the SVR letters that I worked so hard to get. 

What is Halo Top or Thrive Ice Cream? And is it really better for you? Now I'm craving a dilly bar... darn it! Its a nice day out, I just may head out and indulge ... you know.. for old times sake. Lol. 

On a serious note, one thing I still do get is occasional liver area pain. I have visions that its regenerating, but still gives one the old feelings again. Hope that stops one day. How are you others doing with that? Its not frequent, and more when I've had a physical day but is most definitely the same old liver area pain from before. 

We will all be Dairy Queen Sisters and Brothers forever! That really sounds good right now. A big Heath Bar Blizzard with extra cherries! Oooh... Yummmm! 

Hey Tig... I still check in to catch up on all thats going on. I will always feel a part of this group even post-successful treatment. We've shared too much that only us old warriors can really understand. Really glad the newbies don't have to deal with Interferon lows, or Incevik rashes, needle sticks, and weekly blood draws. Its been a journey, and I'm still on it now. 

These new treatments are coming fast and furious. Before we know it, Hep c will be an over-the-counter prescription and more of an annoyance than anything. 

So I'm running more, eating less ice cream, working hard, and still finding it hard some days to believe its actually gone. I asked my hepologist at my last meeting when I would see her again, and she said if I wanted to for my own peace of mind I could get another fibroscan in 2-3 years and to call her if that was what I wanted. Like wow ... don't quite feel ready to drive my bike without training wheels but off I go ....

And Justagirl, I've been there - had really bad anemia with my incevik treatment. Sure can make you tired. Keep the faith - you've got this. Rest when you need to, and drink plenty of fluids like the others say. Its a long road that seems short once its over. 

Justagirl,

Your right, your alllllmost there! You will be Harvoni-free in no time! Hang in there (you've done really well, in all depts.), good on you for keeping your fluid intake up.

Good your doc appoint is earlier than I first thought. Glad you wll be getting your iron/ferritin levels checked.

Since you started on your iron therapy (for your anemia) have they not tested your blood for hemoglobin/iron/ferritin?? Maybe (partly) your fatigue has (still) something do with your low iron (which has probably started improving by now), and/or is just part and parcel of all you and your liver have had to go through having and beating this HCV.

You don't have a sig. line yet (they can be fiddley to do, aren't they) but, you do do a good job of trying to keep us up to date - I won't scroll down through this thread or your other threads to try to find the info, but remind me again, what bloods you did have drawn, when, and for what, all through your Harvoni tretament. I'm loosing track.

 I'm looking forward to your finish too! You have done (and are doing) a good job of it.  C.

Have you tried adding some electrolytes? You might get some extra benefit from Gatorade or the other suggestions we have in the nutrition section. Your diet and what you drink have a big impact on how these drugs make you feel. You keep doing your best to meet these goals and you'll be celebrating the end of Hep C before you know it!

Hi GG,

Thanks for checking in! You're almost there . Sorry about the headaches and fatigue. Some is understandable, considering what you're doing. I have to ask though, are you drinking enough water? I know you don't care for it much, but the symptoms (side effects) you mention are usually caused by inadequate hydration. Try to increase it, some people are very sensitive to the lack of water these drugs demand. Every time you walk past a faucet or an opportunity, drink a glass of water. You'll be better for it!

Let us know how things progress!

Hi justagirl,

So, prior you said you were going back to the inf.disease doc on Jul 30th, was that to get your 4 week blood draw?? - to see if your viral load (VL) has dropped, and to see how your liver function tests(LFT's) are (ALT and AST, etc)?

I would expect, on an 8 week harvoni treatment course, you might be getting VL's and LFT's done twice during treatment, once, at about 4 weeks or sooner, and then again, usually at the end of treatment. (You only mentioned that you would be getting a VL at 12 weeks after EOT).

Can you elaborate on when you are having your bloods drawn (for the hep end of things)? 

Yay on your second bottle - halfway home now!

I thought you sounded better/relieved about things. Nice. It's not easy is it! A nice ole man told me once, what does'nt kill you, just makes you stronger. Sigh.

When you see the doc, about your anemia, (is that the same inf. disease doc, or a dif. doc?) I hope when he draws your hgb/iron/ferritin levels again you find they have now started to turn for the better. 

Keep watering and feeding and treating yourself very well with lots of TLC, rest, fresh air - you are your job #1 at the moment.  C. 

kenatwood wrote:

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"I was not sure where to write this but here goes: About 18-24 months ago I was treated with Harvoni and it cured the Hep C but it also gave me peripheral neuropathy.."

 

JimmyK: The first part regarding it cured your HepC I would agree with. That is what it does. The second part, "...but it also gave me peripheral neuropathy.." is pure speculation on your part. There are far too many folks with that same condition, that have never had HepC nor treated for it. The vast majority of them are Diabetics.

"The infectious disease doctor says it couldn't have been from the Harvoni but even my neurologist says it was!"

 

JimmyK: Based on all the available data I have seen I would agree with the Doctor that says "it couldn't have been". If you have a Neurologist that says "it was" then he should be writing in the Medical Journals regarding not only his findings but the basis for them. What is his or her name? I would like to research the Doctor in question. We are pretty good at research here and I for one love doing it.

 

"..before anyone takes this dangerous drug I am warning you of future side effects, it has caused cancer and other side effects but you must take the time to research it."

JimmyK: This is one of those areas where one must be very careful. You are publicly making a claim that you could be held liable for. You need to be able to prove such a claim in a court of Law. Trust me on this now. Do you really think that the major Companies involved don't monitor this site? You have to be prepared to back anything that could be viewed as slander and / or defamation of character. As one of the Moderators here, HepC Friends does NOT endorse your statement. As someone who personally took Harvoni along side my wife I also PERSONALLY do not come even close to agreeing with you.

"If you know how to forward this to other members please do so!"

JimmyK: There is no need to forward your unsubstantiated claims to anyone. There is more than enough VALID information here for members and guests to consider.

"All I know is I had rather live with the Hep C than with the pain I am going through today and there is no cure for neuropathy!!"

JimmyK: This is again your personal opinion and backed with NOTHING. To attempt to scare folks here who are struggling with valid concerns and questions is in my personal opinion, despicable.

I have a dead brother that would have given anything to be able to treat. Your statement that you would rather live with HepC is to me insulting and is also to many others here that are seeking treatment.

HepC Friends is here to help folks. If you are here to warn them away from treatment, then you are in the wrong Forum.

I admit I have a few buttons and when those are pushed I take on a less than friendly tone. I am working on that and hopefully some day I can simply ignore things of this nature. Clearly I am not quite there yet.

The above comments are my personal opinion. Mine and mine alone. I am responsible for the same. My comments do not come in any "official" capacity related to this site. Forward that.

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 JimmyK

Hi Ken,

Welcome to the forum, sorry it's under these circumstances. If the neuropathy was caused by the Harvoni, I'm unaware of any factual evidence. Like all of these drugs, there's anecdotal references, which many people believe applies to everyone, they don't. It hasn't been out long enough to make any conclusions. Do you have some references we can read on this? Anytime someone experiences problems like yours, we like to hear about it. At the same time, we aren't here to frighten people either. 

There are some side effects to Hep C treatment, but there are many extra hepatic manifestations caused by Hep C itself, neuropathy being a big one. The incidence of severe adverse effects from these DAA's are quite low. There have been discussions of long term effects from DAA use, but again, the incidence overall is quite low. When I decided to accept treatment years ago, there was nothing else available but Interferon, Ribavirin and either Victrelis or Incivek. They presented horrid side effects and long term problems. Some I'm dealing with today. I had to decide if living with a progressive disease was worth the risk and it wasn't, because my liver was shoe leather tough and getting worse. 

If you would like to continue this conversation, please start a new thread of your own. When you use another members thread, it can take the conversation off topic and we like to avoid that. There are some threads we consider "Public" and we invite comments from anyone related to the titled topic. The Harvoni Train is one of them. If you need some assistance finding the right section, I'll be glad to help. You can use the New Members area to introduce yourself and give us some background or you can use the Post Treatment section. 

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