Darn right we gonna beat this mel.. The only reason i am financially able to take layoff is that im currently living in a sober house.. Very cheap rent and its helped me stay clean and sober for almost 17 months.. I used for many years and put myself through hell.. So getting clean was like starting from scratch.. $0.00...Scorpio,
As far as treatment.. Day 4 and feeling good.. Since the mild sides on the first day, im happy to say i havnt had any since then.. I also drink between 5- 8 20 oz waters daily.. I think that is key for anyone on harvoni.. Make sure ur pee is clear..
Sidenote.. Someone yell at me please.. i ordered pizza again...!!!!
Congrats TexasDave!! I also have BCBS with CVS Caremark. I go to the doctor Friday to get the meds. I am ready to get going and rid myself of this virus.
@Scorpio and Islandgirl: How are you guys feeling? I am curious as to whether you guys have gained or lost weight, or have had appetite problems since starting Harvoni (Scorpio is ordering pizza, so probably not :)
Exercise is a big part of my life, I like to run. Do you guys think I will be able to continue with a fitness program while taking the Harvoni?? Just curious.
I am glad more people are getting this great medication now, and just think, within a few years we will be on our way to totally eradicating this awful disease.
Hi gea: I too am an avid cyclist...20 miles on most days and ride with a great group on Saturdays (40-50 miles). Have you had any problems being able to keep up you riding ? I'll be watching your progress closely, as I should be starting my Harvoni adventure this Friday or next Monday. I am so thankful for everyone on this forum. My wife and I are in the process of separating so I'm kind of alone in this battle. I need to see that I'm really not alone and have all the great folks here to be with. Be sure and let us know details of your journey and stay on that bike !!
Hey everyone.. new to the site and been reading for last couple days.. what brought me here was a recent approval for 12 weeks of harvoni..
Breif history; Geno 1a for about ten years from drug use.. been clean now for 16 months.. i never worried to much about it so never really followed up with biopsy, blood tests etc. that is, until i got clean.. the first year of sobriety i was getting a lot of random symtoms that i had never felt and would come and go but consitently get worse... i do construction for a living so the biggest noticeable one was fatigue.. i would get home and just want to pass out.. i was moody all the time.. had random pain in muscles and random arthritis..
i finally decided to get blood tests and biopsy done..my liver values would stay at 1-200..biopsy showed f2 and rediculously high vl...10,000,000..in my followup in nov., my doc was phsyched to tell me about this new medication called harvoni..i had already read about it and kind of figured he was going to suggest it so i was pumped...
my insurance took about a week to approve me for 12 weeks and meds got to doorstep two days later..thank god...i was expecting to go to war with blue cross lol...im out of state visiting younger bro who recently went through bad case of myocarditis (20 year old) that flatlined him a couple times and destroyed his heart to the point where it wouldnt pump on its own..recovering now with an artificial pump in chest..
but anyway i go back to boston tomorow and will have the meds waiting for me when i get there..excited and nervous at the same time and i will be checking in periodically.. thank u all for this forum and for sharing your stories.. ps..my doc doesnt want to see me till 6 weeks for blood work and i had to suggest it...he seemed 100percent confident the meds would kill this virus. should i suggest more frequent lab works??? thank u
I too am starting Harvoni. I was diagnosed in 2005 and got it from a blood transfusion from surgery in 1990. All my levels were good and biopsies were good until this year. My Dr tried to get approval for S/O but insurance denied it , so he sent in for Harvoni and was approved. My questions are what can I expect? Should I take it in the am or pm? Side effects? I am so excitited about this because I have felt crummy for so long I dont think I remember what feeling good feels like. I am at an F3/4 per recent biopsy with an AST -56 and ALt -82 AlphaFeto is 9 and VL is 252111 Are these ok numbers?
Mel,
Thanks for the encouragement! Actually my Dr told me to take the Advil because Tyelnol is harder for the liver to process?
Tutu
[/quote
That's a little confusing Tutu, Here's a post from Lucinda about TylenolHi Sally,
I am impressed and inspired by your determination. There are lots of people who have been through treatment (and yes, wish more were brave enough to). I went through it 3 times before I was cured.
Your doc is right - Tylenol is the better choice over ibuprofen (Advil). However, Tylenol has to be taken as directed - beware of excess doses,, esp from acetaminophen in other sources, such as cold and pain meds. Here's an article I wrote about it: http://www.hcvadvocate.org/news/newsLetter/2014/advocate0214.html#2 (http://www.hcvadvocate.org/news/newsLetter/2014/advocate0214.html#2)
Other side effect tips can be found at the same website at http://www.hcvadvocate.org/hepatitis/factsheets.asp (http://www.hcvadvocate.org/hepatitis/factsheets.asp) Also, I've written 2 books about it, but looks like you are in good shape - you can read a lot of the books for free on Amazon or my website http://www.lucindaporterrn.com/ (http://www.lucindaporterrn.com/) We are here for you - keep in touch.
Lucinda
Feels like you are going in front of a parole board to plead your case.
I was just thinking that earlier. Sadly It is like being on "Death Row" for some! Some get a case review' some don't. Some get a new lawyer, some don't have the resources. And some get a call from the governor, SOME DON"T!
It is sad and frustrating what some have to endure with this whole proccess.
badbradley and KathyNJ, thanks for the support!
Just took my first pill this morning. I had to to call the pharmacy and leave a message with the date. I called yesterday and told them I was taking it starting tomorrow AM. They said I had to call tomorrow and leave a message, I just rolled my eyes, whatever.
With all this talk of side effects, I feel like I am waiting to explode or something, LOL.
I will keep you posted.
I want to give back too Mel! Fundraisers....protests......whatever it takes so everyone can get cured!
Thanks Kathy and Islandgirl. Kathy, I see you also were told no blood work until the end of treatment, I am 12 weeks because I am tx experienced. I have heard other people picking up the meds at the docs office. I don't have a problem with it because both my wife and I work, and I don't like the idea of leaving $30K worth of pills in between my door, LOL. I do not have any charge for blood work from my insurance, which is very good. I have a $5 co pay for the Harvoni, which is just unbelievable, I feel blessed, believe me. Islandgirl, I never considered that it may be a requirement for the ins company. My wife thinks it's for psychological reasons, since most people are now getting SVR, why put them through the stress at 4 weeks if enzymes are still elevated or something like that. Anyway, I will ask when I go to pick up the next batch.The suspense will be killing me!
@Texasdave: Good luck! Today was day 4 so you are right behind me. So far a little bit of a headache. If this is it then it's going to be a piece of cake. I posted before that my Doc is having a heck of a time getting people approved, so yes, I feel very blessed indeed.
So Islandgirl, how is the gym? Was it good today? LOL. John3333, I wasn't ignoring you :) Keep reminding me - I'll get there. I did get some different stretching exercises to try the help the outside tendon from ankle to knee when I was at the doc's today that I'm hoping will stop/lessen the severe cramps I'm getting there. Busy day and didn't make it anywhere near the gym. Gotta do it! ....Islandgirl
Catniss, you must be way tougher than me with your biopsy! I've had 2 over the years and both were a terrible experience! It hurts an awful lot, you can feel the 'stabbing' and the doctor repeats it 2-3 times. On the other hand, fibroscan is non-invasive, rapid and appears to be exact (I did it twice in 2 weeks and got the same results). I would definitely suggest to try and find one of those machines rather than being stabbed again with a biopsy...
Question for everyone. I feel like I am the only one waiting to get blood work until the end of treatment. Is anyone else waiting?
Question for everyone. I feel like I am the only one waiting to get blood work until the end of treatment. Is anyone else waiting?
Readynow
Welcome!
Happy holidays to everyone!! Havnt been on in a while but glad to see so many new peeps got approved and are joining us.
Ill be catching up on reading through the posts tonight but for now just a quick venting sesh..
So i get a letter from xpress scripts sayin suttin like my doc. has to get me reapproved and for me to have him contact them or i will be responsible for last 2 bottles of harvoni.. I call xpress, lady told me i was good and she found nothing wrong... Couple days go by and i get another letter. So turns out xpress is not using caremark anymore and went with acredo for specialty pharmacy.. My doc office told me they would call them and square it away and call me back. Fast forward 1 week and still waiting for a call. I called again today and he tells me same thing (he would call them and call back) never did... so i called acredo my self and they claim they just got the script from my dr. office today.. Hmmmmm
Somebody messed up and i dont like it. My last pill of first bottle i take tomorrow and acredo says it takes 72 hours just to process it nevermind the 1 or 2 day shipping.. So basically i could go a couple days taking none which really pisses me off. Unless doc has samples, which I would have known, if his useless assistant called me back. Im calling bright and early tomorrow to get to the bottom of this..
Other than that, 27th day and feel good most days. Headache and fatique come and go. New years starts clean eating and back to gym for this guy.
Thank u for lettin me share my misfortunes and welcome to the newcomers..
IslandGirl - I love you too Sister!Thanks for the great post which I feel bears repeating and to everyone here for their encouragement on this journey.
Readynow, Welcome, great name and congratulations. It's such an amazing feeling to take that first pill isn't? I really think anyone who has been there totally gets it and as usual the rest of the world thinks we have lost our minds, That's ok, I need to be a little more mindless once in a while!
Thinking about 2015 and how much happiness it's going to bring to most of us and beyond grateful to all of you! Remember to do something kind for someone else whenever you can, it doesn't have to be financial in nature, it can be as simple as a smile or hello to someone lonely!
Now I am going to sit back and imagine my forum sisters and brothers all holding hands on top of a mountain screaming FREEDOM!
Mel
Hi All,
I started Harvoni on Jan 1, I was diagnosed back in 2000. I almost started the interferon route but backed out after reading about the side effects and the fact that I was asymptomatic. So far there have been little or no side effects with Harvoni I have not experienced the headache, the fatigue or the nausea reported by others in the forum. Granted it has been only 5 days but so far nothing that I can complain about. Last year I went through 43 radiation treatments for cancer and the bouts of fatigue were of the type that kept you sitting with very little energy for around 30 minutes to 1 hour before it abated and you could function. Anyone else out there that is experiencing little or no side effects?
I am curious. I have Harvoni Lot # 002984A
Does everyone have the same lot number?
Hi IslandGirl,
Thank you for the kind words, that was so sweet! Hope your Mom is doing better, you are a good daughter to be a her caregiver and you are also lucky to have all this time with your Mom so cherish each minute. I lost my mom when I was in my early 30's and she was only 58 due to pancreatic cancer. You are way more lucky than you can imagine so just remember that on the days she makes you a little crazy :)
DeeDee,
So cool that the UPS guy came back for you! I have my delivery set up so that I don't have to sign for it just in case I run out to the dr. or the store. I've been here each time but I can only imagine how I would feel if I missed them. You are on your way to undetected first so just listen to your body and you will feel like a new person before you know it!
Mel
Mel, how do you set it up so you dont have to sign? You dont mean, they'll leave $30k worth of meds on your front porch, do you? ;)
Hi DS,
Actually they know to put it between my screen and front door and then they lock the screen door but that's because I have had the same driver forever. I make it a point to be here the entire day a package from the drug store is coming however emergencies do happen so I have that covered as well. I am lucky enough to live in a very low crime community and area so nothing has ever been stolen even after sitting in front of the house for 2 days. I am in a townhouse so if either of my neighbors see something outside I haven't grabbed they will bring it into their place and send me a text to let me know. We all help each other like that.
Each time I order the medication I have to tell them no signature required. It's coming in an plain plastic FedEx envelope so there's no way for anyone to even have a clue what's in the envelope. The return address doesn't even say it's from the Pharmacy :)
Mel
Doing the HAPPY DANCE - GOOD NEWS today!!!!!!!!!!
Undetectable virus on Harvoni at week 6! HCV RNA PCR Quant & HCV RNA PCR Quant Log - NOT DETECTED 12/31/14!! My platelet count is still a little low but much improved, ALT & AST are in the normal range!!! It's been forever since I've seen that:) The news was so overwhelming that I could hardly take it in; I still feel like pinching myself to be sure it's true. Next lab work will be one month after treatment and then 6 months after treatment. She's so sure it will still be fine that she said I could just call for the results. It may take that long for me to feel this is real:) Thanks for all your encouragement and support helping me make it this far. I know it's not over, but the relief and gratitude I'm feeling right now is both joyful and overwhelming. I love you guys and I'm praying we'll all be saying cured and shouting FREEDOM from the mountain top this year! ...Islandgirl
IGirl.....Congratulations!!! Sooooo Happy for you !! It's really amazing to have this virus for so long and then it is UND. This Harvoni seems to be the real deal. I had my blood drawn today for 4 week labs and should get my results soon. Hoping that my results are similar to yours.
JB
YAY.. Island Girl. I am thrilled for you. YES! Keep up the good attitude and you are home free! I am so delighted that we are benefiting from this miracle drug and know there are millions more out there who will eventually be HepC free too.
Congratulations!!!!!!!
Katie
Hi all,
Just a question for everyone. Just had an infected cyst removed today and told the derm about taking the harvoni and how I thought I could not take antibiotics during treatment.!she prescribed a topical antibiotic but said if I had an infection, she would have to get in touch with my gastro doc to see what antibiotic I could safely take. has anyone been in this situation while on Harvoni and what did you take. For the first 4 weeks, little to no side effects, but my immune system seemed to have taken a nosedive. Still suffering from a common cold for the past 2 weeks and now this thing flared up practically overnight. I only have 23 pills to go till end of treatment but I think the major fight going on with the Harvoni vs hep c has stressed out my immune system. Still waiting for my 4 week labs to come back. initially, my doc said he would only test after 8 week treatment was completed, but he changed his mind at my dr. Appointment and decided to test. Haven't been on in awhile but thrilled that some are getting great results. Has anyone else felt this was happening during treatment. Then again it could be the long, cold rainy, dreary winter season. Best of luck to all as we wind our way through these stumbling blacks to the finish line
To Katie- thanks for the great read about Michael Sofia, our patron saint, who should be nominated for the Nobel Prize in medicine. Sofia developed the nucleus of our Harvoni drug (Sovaldi) at a small pharmacy tech company in NJ. They were bought out by Gilead, who combined Sofia's drug with another drug to create Harvoni. This second generation son of Italian immigrants, Sofia was born in Baltimore and went on to attend Cornell and became a medical scientist. His brilliance brought us to where we all are today -- on the path to being cured. Thanks for the good wishes.
Tested at 4 Weeks: UNDETECTED!!!! I'm currently in week 7 no SE happy to report. Humana was easy but now questioning my last 4 weeks of meds. Something about my Prior Authorization timing out? Asked Dr. If I could stop at 8 weeks since I'm Undetected but he said "not if you want to stay Undetected!" Hoping I can get the last 4 weeks of meds!!Speak directly to Gilead about that if you can as the 12 week treatment is a standard precautionary measure even though you will be UD on the test at as low as 4 weeks. If you cannot finance the last 4 weeks there is a co- pay option with Gilead that you should explore.
I drink tap water mostly. Too many plastic water bottles in the world.
Zephyrhills is a town in central FL not far from Tampa so not sure how wide is their reach outside their local area.
You can set up UPS alerts to know delivery windows and when package is on the truck for delivery.
Good Afternoon
Hello Walt, Well congratulations! I was excited as well to get started. My co pay is $70.00. What coupon as you speaking about?
On the other hand. I have 5 pills left, I have develop a rash on my right side (stomach), my Dr. is not compassionate and I now have to go see my primary.
I am in need of encouragement because I am ready to stop taking it.
Caremark Pharmacist said a rash is possible. The Dr. said it is not and I don't know who to believe.
Good Afternoon
Hello Walt, Well congratulations! I was excited as well to get started. My co pay is $70.00. What coupon as you speaking about?
On the other hand. I have 5 pills left, I have develop a rash on my right side (stomach), my Dr. is not compassionate and I now have to go see my primary.
I am in need of encouragement because I am ready to stop taking it.
Caremark Pharmacist said a rash is possible. The Dr. said it is not and I don't know who to believe.
Blood work came back UNDETECTED! Now if I can just stay that way until April 30th I will be fully cured! Wow. On cloud nine.Good for you catniss! On to SVR12. CURED!
sorry I'm late cants, congrats! @katie, spring is on the way (I'm calling BS on the groundhog) it was pouring rain all morning lol, I'm having spring !!! ;)I think what is happening to the Canadian prognosticator(s) might be some weird form animal caused larceny. And they might just be getting even with us humans. There are reports of strange tasting deep fried sweet and sour pork showing in some really bad restaurants in the Wiarton area of Ontario Canada where there is still a large population of ground hogs. But then again the Chinese food in Ontario has always been well known for being vastly inferior to ours out West. I know I ate in one bad establishment on the road years ago in Portage la Prairie Manitoba going to see my wife's parents and had a suspiciously bad sweet and sour pork with tiny bones in it.
kate
Hi it's been a while since I've been on.
Welcome to everyone that's new and congrats to all that have gone UD.
Readynow, the blood tests I had done at 2 weeks were just to check general blood work. I have now had my one month blood work done and my doctors MA just called to tell me I am UD. My VL at the beginning was 1.3 mil
feels great
Katie: That's some good advice. I don't see the research thread. How do I find that? Thanks
Wow, you were lucky to get the meds with relative ease. You could ask for more frequent labs, but really, not sure it is clinically necessary. assuming you are "all in" regardless of what the labs show.
Day 84..... just swallowed my last orange miracle pill !! The treatment is over ! Now I hope to stay UND and achieve SVR and finally be done with this leech of a disease that had been slowly attacking me since I was 18 years old. Experiencing a multitude of feelings right now and would like to thank everyone on this forum for the support,love,and information that you have given me.
Health and Happiness to all !!!
John
Good Morning,
@ Katie, it was for 8 weeks, It is disappointing, however we are responding to the treatment.Yes i am sure we will be fine and hoping we both come back with that magic word of Undetected.
@ Catniss, just hang in there, I feel you...it took 3 days before I got my results. One thing for sure Harvoni is working for us. :)
@ Zora1959, welcome to this beautiful forum