What wonderful news! Good for you girl. You've done it.
Just great, you are DONE with this having this hep C stuff. Now you can recover, get to feeling better after this long stressful ordeal.
You very much deserved this good thing. Getting cured was the very best possible thing you could have ever done for yourself. Good job.
Nice to know they had your back, either way, with 8 weeks or 12. Nice your treatment only had to be 8 weeks, a bonus.
You were saying you are of the "some" who were cured quick, in as little as 8 weeks! on these million dollar drugs - it's the L'Oreal syndrome - (you know the commercial?) - we're worth it! hee hee
Be happy, don't cry - unless they are happy tears! C.
Tig said
Aug 3, 2017
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
Canuck said
Jul 28, 2017
Attention shopper's - clean-up required on aisle "just-a-girl". We have a lot of icecream and bakery goods all over the place here - poor ole just-girl probably doesn't have a clue what kind of sweet accident happpened to her thread! (I do wonder what wonderful thing is inside that box!)
Hey just-a girl,
How's it going with the harvoni. Last word, you were going for bloods on July 21 (including checking your iron?) - did you get any results back yet?
Stick with the lots of fluids and good diet and rest - don't be tempted to eat too many of the goodies we tend to celebrate with. How many more days of treatment left now? C.
Tig said
Jul 28, 2017
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!
LamontCranston said
Jul 28, 2017
Congrats on your progress, it's inspiring to us who are at the start of treatment. I took my 2nd Epclusa pill last night, and so far I have only felt a little dizziness, and some general "oddness", like I am not 100% myself.
But I did take a nice walk to a new bakery in my neighborhood to get something to celebrate ...then booked a flight to Vancouver and well, I better stop before I run out of money.
Oh, and let me chime in on gas...I am almost 100% positive that my ongoing digestive issues, that include gas, constipation and general yuckiness after eating are attributable to my HepC. Well, I HOPE it is, cuz I want to feel my normal old self again.
-- Edited by LamontCranston on Friday 28th of July 2017 06:22:59 PM
Loopy Lisa said
Jul 23, 2017
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
wendyo said
Jul 22, 2017
Gracie - they are types of ice cream. Google them and read about them is my suggestion
Gracie said
Jul 22, 2017
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.
Tig said
Jul 22, 2017
Yep, me too, Gracie. It comes and goes though. I know that the ascending colon passes directly through/under the RUQ and is very likely a great deal of that discomfort you feel. I can't begin to tell you how many of the patients we have ultrasounded with the same RUQ complaint of pain and the diagnosis has been gas/bloating. There are times when the gall bladder is the culprit, but that pain can be terrible. Ask anyone with GB disease about that one. They had to yank mine out due to ongoing pain and insufficiency. As you're aware, the liver itself has no pain receptors at all. The capsule it's enclosed in and the supporting tissues are sensitive and if the liver itself experiences any inflammation, the capsule expands, causing discomfort. Gas and bloating can cause things to shift around, pressing on areas and cause discomfort.
Those of us that ended our HCV career with advanced fibrosis and cirrhosis, can experience these issues for an undetermined amount of time. Even though we've slayed the beast, many of us have a ways to go before the damage is resolved. Some will always have levels of fibrosis and scarring that don't disappear. To use a baseball analogy, we're in the lead, bases loaded, no outs, bottom of the ninth and the SVR Train is on third and Big Pharm is up to bat. All in all, we just have to finish the game, because we know we have already won....
Gracie said
Jul 22, 2017
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.
wendyo said
Jul 22, 2017
Hi Gracie! SO glad to hear how you are doing. Had to share this...anyone try Halo Top or Thrive ice cream yet? I do prefer the Halo Top. Pricier but much better for ya. As a fellow warrior that tried the old treatments, had to share about this with my blizzard gang
Tig said
Jul 21, 2017
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!
Canuck said
Jul 21, 2017
Hi Gracie,
I'm always glad to read your posts. Nice, to know how you are and how you are doing. Glad to see your fibroscan leveling out. I liked your view back and the new view forward, no training wheels hee hee. Less ice cream eh? Hmm. Agree, the new DAA'ers will never know what guts it took to get cured in the ole days. C.
Gracie said
Jul 21, 2017
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 ....
Tig said
Jul 20, 2017
Hi Gracie!
Hope you're doing well. Let us know how life is treating you when you have time. We miss you checking in every day! Be well old friend...
Gracie said
Jul 20, 2017
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.
Gracie said
Jul 20, 2017
Hi Ken,
I had pains in my feet and hands throughout my treatment with harvoni. Not sure if its neuropathy, but I do know that is a symptom of hep c that maybe the treatment exasperates. Harvoni, like any drug, does have side effects, some bad. I have to tell you that my hand and feet pain have improved since ending treatment as has my fibrosis score. Some days I still get pains in my hands, feet hardly ever. But I know that my liver is healthier, improving every day, and I have a new lease on life just knowing I don't have that dragon on my back any longer. Hoping you see improvements too the farther you go alone. This is a miracle drug for most, and the same as anything in life, not for some. I thank God every day that I was given the chance to successfully complete this treatment and wish you continued improvements in your health and symptoms.
Canuck said
Jul 18, 2017
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.
justagirl said
Jul 18, 2017
i will definitely get some Gatorade , thank u .. im so looking forward to the end of this.. almost there
Tig said
Jul 18, 2017
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!
justagirl said
Jul 18, 2017
hello yes im drinking a gallon of water a day plus extra
Tig said
Jul 18, 2017
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!
justagirl said
Jul 18, 2017
16 more days to go on the pills.. i have a doc apt on july 21 do blood draw and see how its going.. plus check and see if my anemia is getting any better..ive been having some side effects extreme fatigue and headaches some worse than others
Canuck said
Jul 2, 2017
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.
justagirl said
Jul 2, 2017
hello canuck yes i was really re leaved once i was told i was getting the treatment.. in 3 weeks i go back to doc get blood work done for the anemia as well also i just got my second bottle of pills.. so my race for the cure commences .
JimmyK said
Jun 28, 2017
kenatwood wrote:
"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.
JimmyK
Canuck said
Jun 28, 2017
Hey Justagirl,
It was lovely to hear you finally got your 8 weeks of Harvoni, that you had to try so hard to get. Good for you. It all worked out in the end, due to your diligence.
Almost 4 weeks done! You will see some reward for your efforts when you get the result of your week 4 blood draw back. I am betting you (like so many harvonians) will see a great response in your ALT/AST and VL.
Sorry to hear about the anemia that must have been going on before you started your harvoni. It's good you and your doc are on it though with iron therapy, just bad timing to have to deal with both anemia and your HCV treatment at the same time, and sometimes those iron pills can be a little bit rough on your gut too, they can constipate some people.
Hope you are drinking LOTS and LOTS of water throughout the day, that will help everything, and that you are resting well and trying to eat well - these are important as well. Making sure to to eat vitamin C containing foods at the same main meal of the day that contains the largest amount of iron containing food (meat, red meat mainly), will help you absorb more of the iron from that meal.
I hope the next time you have your blood tested they will also check your hemoglobin, iron/ferritin level so you can guage how well the iron is workng for you and how much longer you may have to be taking it.
I am glad you have not been feeling too bad, but still, we know this journey has been trying for you. You've done a good job of it, getting yourself to treatment! You sound much less stressed now too. Were you feeling very relieved, once you knew you were going to be successful in getting the Harvoni?
Good you and your doc started your B immunization, I too did it that way, started just before HCV treatment, and then competed over time.
Rest, fresh air, lay low, eat and drink well, take good care of yourself, you're halfway through already!!
You should try to create a signature line. Please do keep us posted. Have a good doc visit on the 30th! C.
-- Edited by Canuck on Thursday 29th of June 2017 01:57:25 AM
Tig said
Jun 28, 2017
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.
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.. The infectious disease doctor says it couldn't have been from the Harvoni but even my neurologist says it was! 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. If you know how to forward this to other members please do so! 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!!
Good luck,
Ken
justagirl said
Jun 28, 2017
well i have 7 more pills to go and ill be finished with the first 4 weeks of treatment, then ill get my next 4 weeks of medication... so far i have had :0 side effects .. i go see the disease specialist doc on the 30th of this month (fri) i am taking 325 MG of iron pills 3 times a day due to the fact that im severely anemic due to the fact of my severe menstruation , that was happening every couple of weeks combined with the start of menopause .. the pills do make me a little sick sometimes but i have a huge bottle that i have to completely finish.. ugg..after my 8 weeks is up i have to wait another 12 weeks to get my final conformation of the cure. i also started my hep B vaccinations I got 1 more to get in six months .ill keep an update through this process..
YAY GG you did it!
Congrats GG!
Blessing to you
Alison
Hey GG!!!!!!!!
What wonderful news!
Good for you girl. You've done it.
Just great, you are DONE with this having this hep C stuff. Now you can recover, get to feeling better after this long stressful ordeal.
You very much deserved this good thing. Getting cured was the very best possible thing you could have ever done for yourself. Good job.
Nice to know they had your back, either way, with 8 weeks or 12. Nice your treatment only had to be 8 weeks, a bonus.
You were saying you are of the "some" who were cured quick, in as little as 8 weeks! on these million dollar drugs - it's the L'Oreal syndrome - (you know the commercial?) - we're worth it! hee hee
Be happy, don't cry - unless they are happy tears!
C.
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!
Attention shopper's - clean-up required on aisle "just-a-girl". We have a lot of icecream and bakery goods all over the place here - poor ole just-girl probably doesn't have a clue what kind of sweet accident happpened to her thread! (I do wonder what wonderful thing is inside that box!)
Hey just-a girl,
How's it going with the harvoni. Last word, you were going for bloods on July 21 (including checking your iron?) - did you get any results back yet?
Stick with the lots of fluids and good diet and rest - don't be tempted to eat too many of the goodies we tend to celebrate with. How many more days of treatment left now? C.
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!
Congrats on your progress, it's inspiring to us who are at the start of treatment. I took my 2nd Epclusa pill last night, and so far I have only felt a little dizziness, and some general "oddness", like I am not 100% myself.
But I did take a nice walk to a new bakery in my neighborhood to get something to celebrate ...then booked a flight to Vancouver and well, I better stop before I run out of money.
Oh, and let me chime in on gas...I am almost 100% positive that my ongoing digestive issues, that include gas, constipation and general yuckiness after eating are attributable to my HepC. Well, I HOPE it is, cuz I want to feel my normal old self again.
-- Edited by LamontCranston on Friday 28th of July 2017 06:22:59 PM
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
Gracie - they are types of ice cream. Google them and read about them is my suggestion
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.
Yep, me too, Gracie. It comes and goes though. I know that the ascending colon passes directly through/under the RUQ and is very likely a great deal of that discomfort you feel. I can't begin to tell you how many of the patients we have ultrasounded with the same RUQ complaint of pain and the diagnosis has been gas/bloating. There are times when the gall bladder is the culprit, but that pain can be terrible. Ask anyone with GB disease about that one. They had to yank mine out due to ongoing pain and insufficiency. As you're aware, the liver itself has no pain receptors at all. The capsule it's enclosed in and the supporting tissues are sensitive and if the liver itself experiences any inflammation, the capsule expands, causing discomfort. Gas and bloating can cause things to shift around, pressing on areas and cause discomfort.
Those of us that ended our HCV career with advanced fibrosis and cirrhosis, can experience these issues for an undetermined amount of time. Even though we've slayed the beast, many of us have a ways to go before the damage is resolved. Some will always have levels of fibrosis and scarring that don't disappear. To use a baseball analogy, we're in the lead, bases loaded, no outs, bottom of the ninth and the SVR Train is on third and Big Pharm is up to bat. All in all, we just have to finish the game, because we know we have already won....
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.
Hi Gracie! SO glad to hear how you are doing. Had to share this...anyone try Halo Top or Thrive ice cream yet? I do prefer the Halo Top. Pricier but much better for ya. As a fellow warrior that tried the old treatments, had to share about this with my blizzard gang
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!
Hi Gracie,
I'm always glad to read your posts. Nice, to know how you are and how you are doing. Glad to see your fibroscan leveling out. I liked your view back and the new view forward, no training wheels hee hee. Less ice cream eh? Hmm. Agree, the new DAA'ers will never know what guts it took to get cured in the ole days.
C.
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 ....
Hi Gracie!
Hope you're doing well. Let us know how life is treating you when you have time. We miss you checking in every day!
Be well old friend...
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.
Hi Ken,
I had pains in my feet and hands throughout my treatment with harvoni. Not sure if its neuropathy, but I do know that is a symptom of hep c that maybe the treatment exasperates. Harvoni, like any drug, does have side effects, some bad. I have to tell you that my hand and feet pain have improved since ending treatment as has my fibrosis score. Some days I still get pains in my hands, feet hardly ever. But I know that my liver is healthier, improving every day, and I have a new lease on life just knowing I don't have that dragon on my back any longer. Hoping you see improvements too the farther you go alone. This is a miracle drug for most, and the same as anything in life, not for some. I thank God every day that I was given the chance to successfully complete this treatment and wish you continued improvements in your health and symptoms.
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.
i will definitely get some Gatorade , thank u .. im so looking forward to the end of this.. almost there
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!
hello yes im drinking a gallon of water a day plus extra
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!
16 more days to go on the pills.. i have a doc apt on july 21 do blood draw and see how its going.. plus check and see if my anemia is getting any better..ive been having some side effects extreme fatigue and headaches some worse than others
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.
hello canuck yes i was really re leaved once i was told i was getting the treatment.. in 3 weeks i go back to doc get blood work done for the anemia as well also i just got my second bottle of pills.. so my race for the cure commences .
JimmyK
Hey Justagirl,
It was lovely to hear you finally got your 8 weeks of Harvoni, that you had to try so hard to get. Good for you. It all worked out in the end, due to your diligence.
Almost 4 weeks done! You will see some reward for your efforts when you get the result of your week 4 blood draw back. I am betting you (like so many harvonians) will see a great response in your ALT/AST and VL.
Sorry to hear about the anemia that must have been going on before you started your harvoni. It's good you and your doc are on it though with iron therapy, just bad timing to have to deal with both anemia and your HCV treatment at the same time, and sometimes those iron pills can be a little bit rough on your gut too, they can constipate some people.
Hope you are drinking LOTS and LOTS of water throughout the day, that will help everything, and that you are resting well and trying to eat well - these are important as well. Making sure to to eat vitamin C containing foods at the same main meal of the day that contains the largest amount of iron containing food (meat, red meat mainly), will help you absorb more of the iron from that meal.
I hope the next time you have your blood tested they will also check your hemoglobin, iron/ferritin level so you can guage how well the iron is workng for you and how much longer you may have to be taking it.
I am glad you have not been feeling too bad, but still, we know this journey has been trying for you. You've done a good job of it, getting yourself to treatment! You sound much less stressed now too. Were you feeling very relieved, once you knew you were going to be successful in getting the Harvoni?
Good you and your doc started your B immunization, I too did it that way, started just before HCV treatment, and then competed over time.
Rest, fresh air, lay low, eat and drink well, take good care of yourself, you're halfway through already!!
You should try to create a signature line. Please do keep us posted. Have a good doc visit on the 30th!
C.
-- Edited by Canuck on Thursday 29th of June 2017 01:57:25 AM
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.
How to Start a New Thread
Good luck,
Ken
well i have 7 more pills to go and ill be finished with the first 4 weeks of treatment, then ill get my next 4 weeks of medication... so far i have had :0 side effects .. i go see the disease specialist doc on the 30th of this month (fri) i am taking 325 MG of iron pills 3 times a day due to the fact that im severely anemic due to the fact of my severe menstruation , that was happening every couple of weeks combined with the start of menopause .. the pills do make me a little sick sometimes but i have a huge bottle that i have to completely finish.. ugg..after my 8 weeks is up i have to wait another 12 weeks to get my final conformation of the cure. i also started my hep B vaccinations I got 1 more to get in six months .ill keep an update through this process..