Author Topic: Starting Harvoni!! (Read 373989 times)

Islandgirl · « **Reply #300 on:** January 13, 2015, 09:07:30 pm »

I agree, what a talented and brilliant man! We do owe him our lives. Not enough words to express our gratitude adequately... Islandgirl

kate0b1 · « **Reply #301 on:** January 14, 2015, 06:20:45 am »

I read an article about him a while back, imagine having that brain! It must be pretty awesome to be the guy who kills hep c.

kate

BattleTheBeast · « **Reply #302 on:** January 14, 2015, 08:23:47 am »

Another Jersey Boy does good! Mr. Sofia does deserve a Nobel Prize in Medicine, he's a true hero who's brilliance will now save many lives. Just amazing!

So happy to hear all the great Undetected news, makes me smile!

xoxoxoxo

Mel

RiseUp · « **Reply #303 on:** January 14, 2015, 09:45:36 am »

Good Morning fellow warriors, today is day #29 and so far no side effects. I will be going to see my doc tomorrow for my 4 week results. Below are my last three blood test results all done in 2014.

1/27 9/8 12/16

ALT 44 71 83

AST 40 53 67

VIRAL LOAD 8,332,930 4,388,630 4,169,633

I will post my 4 week results as soon as I receive them.

Everyone have a great day. The Lord is good.

Long_Haul · « **Reply #304 on:** January 14, 2015, 01:54:13 pm »

Indeed Thanks you Mr. Sofia ! After enduring Interferon, this is a breeze...

Congrats to Island Girl, Katie, and KatieNJ on your great news!

Day 13 sides are now almost non-existent!

We all need to keep at it!

AL

Islandgirl · « **Reply #305 on:** January 14, 2015, 07:05:32 pm »

Thanks, Al, and congrats on finally getting to the right treatment for us type 1's - we're the lucky ones!! I'd begun to despair that they would ever develop something for our genotype, Mr Sofia is definitely OUR Harvoni Hero! Keep on the path, we're gonna get there! ....Islandgirl

Ollie · « **Reply #306 on:** January 15, 2015, 09:34:55 am »

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!!

HHburme · « **Reply #307 on:** January 15, 2015, 11:17:13 am »

4 week results are in, UND. So excited that harvoni is working. This is absolutely amazing medicine. Believe infected in 1977, diagnosed 15 yrs ago, and now after 4 weeks undetectable. WOW! 50 more pills to go.
It's a great day. Hoping everyone has a great day and we all roll on together !!!
Fight the Good Fight !!
JB

BattleTheBeast · « **Reply #308 on:** January 15, 2015, 11:21:45 am »

WOOHOO JB!

Congratulations! It's the best feeling ever, well I guess it will be better to get the SVR 24 but I don't know that yet

Glad you are doing so well!

Mel

Islandgirl · « **Reply #309 on:** January 15, 2015, 11:25:19 am »

Congrats, JB, FANTASTIC NEWS!!!!!!!!!!!! Happy, Sunshine Day, for sure! IG

Wow, Ollie, I hope they get that fixed soon! I have Humana Medicare Complete PPO, is that the type you have? You sure had me scrambling for my approval letter from Humana! It's dated 11/26/14 and the authorization is good until 2/18/15. My last bottle, filled 12/22/14 says there is one more refill and I'll certainly be calling the TLC Rx people to make sure they get that last bottle filled before 2/18/15! If you need the Humana Pharmacy Operations Customer Care number, it's 1-800-555-2546, between 8:00 a.m. and 6:00 p.m. - this was listed on the letter of approval I received. Did you get a letter like this too? Good luck! ....Islandgirl

Katie · « **Reply #310 on:** January 15, 2015, 03:58:13 pm »

The beast is dying!!!!! Congrats to Ollie and JB! Just know you doctor is right in continuing the treatment as the UD result doesn't mean there aren't some minute amounts hiding out and replicating, so stay diligent and take as much Harvoni as you can.

Over 40 years ago in microbiology, I did research infecting bacteria with a virus and calculated their expansion and that's when I decided they were aliens, coming from a far away, dangerous planet....maybe Uranus because they are Ass Kickers. That lab work was a real eye opener for me.

Basically ( and generally speaking) what they do is attack individual cells and inject a nucleic strand, usually RNA or DNA into a host cell and it uses the host cell to replicate which destroys the cell...in our case the liver cells. The host cell explodes and releases them to replicate into other cells. This is what causes the damage to liver tissue or whatever the virus is attacking (Common cold would be mucus membranes) They are usually very specific. One virus infecting 1 cell can produce millions of new viruses so the growth can be fast and furious. The virus is not a living organism and were only discovered once we had an electron microscope. They are much, much tinnier than bacteria.

That may be more information than you want but I think it is important to understand what we are fighting.

Once again.....congratulations and keep in mind how devastating Harvoni is to this tiny, tiny monster. It is a wonderful thing!

Katie

JoeK9999 · « **Reply #311 on:** January 15, 2015, 04:48:01 pm »

Katie,
Thanks for the great explanation in layman's terms!
Could you explain to us how Ledipasvir/Sofosbuvir work apart and together
to destroy the virus?
Thanks much!
Joe

Katie · « **Reply #312 on:** January 15, 2015, 05:01:09 pm »

Joe: I don't really know but my take on it is that Sofosbuvir actually kills the virus and Ledipasvir inhibits the replication. The previous treatment did not inhibit the replication fast enough so even though the virus was being taken down, it was still replicating faster than it was being killed, thereby not clearing it. An UD test could be seen but there were still some hiding out and the concentration wasn't enough to be detected. That too is why it is so important to continue Harvoni, even if you are UD at 4 or 8 and sometimes 12 weeks (for those on a 24 week schedule) Harvoni came up with a new inhibitor and I think that is what is making it so effective.

I should probably read up more on it, but I still have the attitude of Don't Worry, Be Happy, (so unlike me and that is definitely from the medication) so I haven't focused on it.

I will be convinced once I am checked 6 months after treatment and it is still UD but am celebrating each step forward.

This is just my take on it so I may be off base and if anyone has better information, please correct me.

Katie

Islandgirl · « **Reply #313 on:** January 15, 2015, 05:10:31 pm »

Ditto!

ROFLAMO, Katie, with your comment, "that's when I decided they were aliens, coming from a far away, dangerous planet....maybe Uranus because they are Ass Kickers". Smart lady with a good sense of humor! Love it:) and thanks for sharing your knowledge with us. Like you, I'm celebrating each step forward and have marked my calendar for that 6 month after treatment lab work date! ....Islandgirl

KathyNJ · « **Reply #314 on:** January 15, 2015, 06:20:38 pm »

Congrats to JB and Ollie for joining the Four Week Virus Free club! It's a great feeling but the pinnacle will be the 24 Forever Club. Happy for both of you.

Katie · « **Reply #315 on:** January 15, 2015, 07:07:43 pm »

Glad you caught that Island Girl...we have to keep our sense of humor and when you are doing research, much of it is very repetitive, boring and extremely slow before you see results with lots of room for errors.

Islandgirl · « **Reply #316 on:** January 15, 2015, 07:49:46 pm »

That should have been, ROFLMAO:) I got so tickled, I didn't even realize I transposed a couple of letters! I probably don't need to explain the letters, but just in case someone out there isn't familiar with it, ... Rolling on floor laughing my A off

Yep, a good sense of humor gets up through a lot of things and laughter is good for us:) ...Islandgirl

Katie · « **Reply #317 on:** January 15, 2015, 07:54:14 pm »

My brain automatically put them in the right order...auto correct. HA! Humor is especially important for healing and gets those wonderful endorphin's going!

I have been on the computer way too much today. Nothing accomplished but sometimes that's the best thing to do. So heck with it! HA!

Islandgirl · « **Reply #318 on:** January 15, 2015, 08:13:28 pm »

Same here:)
....Islandgirl

Mugwump · « **Reply #319 on:** January 17, 2015, 11:13:16 pm »

Quote from: Ollie on January 15, 2015, 09:34:55 am

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.

That way they will put pressure on the insurance firm and you will authorize them to inquire as to why they are stopping your authorization without consulting the recommendations by Gilead by making clinical decisions about your treatment duration.

Be pro-active they will listen.

Eric

catniss · « **Reply #320 on:** January 18, 2015, 03:59:50 pm »

Only 10 more pills to go. First doc appointment and blood work in 11 days. The closer I get the more worried and weepy I am. Trying to stay positive but it has been hard lately. No reason why. I have had no issues since starting harvoni. One of my worries is that 8 weeks is just not enough. I want to 24. Crazy I know. Before I found out about harvoni I was plugging along thinking hep c is just something I have and just accept it. Since starting harvoni I am just overwhelmed at the thought of being " normal". I did not realize what a monkey on my back hep c has been. Thanks for letting me get this off my mind.

Katie · « **Reply #321 on:** January 18, 2015, 04:22:40 pm »

Catniss, I looked at your history and find it odd that you are not on the recommended treatment for 12 weeks. If I were you I would talk to the doctor to find out why they feel 8 weeks is adequate. Please scroll down and see my comments on January 15th and discuss this with your doctor ASAP.

Katie

catniss · « **Reply #322 on:** January 18, 2015, 06:00:07 pm »

Kinda of insulted that Katie that you are implying that I went into this treatment blind. Also was not aware that you had access to my medical record. I thought this forum was about support and not members spewing there uninformed opinions. Goodnight all and good luck. I'm out.

Katie · « **Reply #323 on:** January 18, 2015, 06:11:35 pm »

Dear Catniss,
I certainly didn't mean an insult, only worry and I apologize that you took it that way. I just went back and read your previous posts to get an idea of why you were on only 8 weeks. It is a learning experience for all of us and my intent is to support and help in any way I can.

Please don't think for a minute that I wanted to upset you in anyway. We are all like a big scary but wonderful experiment and I send you nothing but good wishes with respect for you and wish for your cure and a cure for all who have dealt with this monster!

Katie

DeeDee · « **Reply #324 on:** January 18, 2015, 06:36:39 pm »

Good Morning, Afternoon, Evening,
Congratulations to everyone who viral loads are undetected...Yeah
It's been a week today, wouldn't miss taking the pill @ 7:00pm. No side effects. Dr has made appointment for blood work on the 6 of May and to see him on the 9th. With all the good news I am reading I am looking forward to the same.

Mel, Islandgirl, Catniss and Katie, My insurance company insist that I sign for it when it's delivered, I will make sure I won't miss the the 2nd one.

7 more weeks to go

DeeDee · « **Reply #325 on:** January 18, 2015, 06:42:58 pm »

Correction March 6 for blood work and the visit is the 9th

Katie · « **Reply #326 on:** January 18, 2015, 06:52:21 pm »

You are on your road to recovery Dee! Keep up that good attitude, drink your water

and March will bring you good news! We are bringing this monster down!

Katie

DeeDee · « **Reply #327 on:** January 18, 2015, 07:08:39 pm »

Thanks Katie,

I just read about Dasani water...I will have to change to spring. I also notice others ASTs,Alts etc. Mine has always been within range...no highs or lows. Also my HCV RNA in 2014 was 2017239, 2013 is was 3909882 and in 2012 it was 20122269540. Can you shed some light on this.
Yes Katie I like that we are bringing the monster down

Katie · « **Reply #328 on:** January 18, 2015, 07:37:28 pm »

Dee Dee, I can only speak from my personal experience or what I have read. My ALT/AST was normal at least 80% of the time and did rise slightly to just out of the normal limits when I was sick with something else. I figured my system was just taxed too much when I had a cold or dental problems.

My viral load for the past 9 years started at about 4 million, spiked at 16 million 3 years later (when I was really feeling quite good), came down to 3 million and my last check was about 2,600,000. I think it fluctuates all the time as this is the virus that is in the blood. I had a doctor tell me the blood count really doesn't count all that much, what matters is how many are in working on the liver. So who knows. I never have heard that before or since but I suppose it makes sense as some invade the host cells (liver) and others are in the blood.

In any case, you should be just fine and am glad you are not burdened with side effects. Harvoni is truly a miracle drug and we are blessed that the breakthrough happened when we needed it!

Enjoy your day/evening depending what time zone you are in.

Katie

Islandgirl · « **Reply #329 on:** January 18, 2015, 07:57:20 pm »

Wow, DeeDee, after I read your post I looked up Dansani water and agree - why would someone buy it. I don't normally buy it, but will make sure I don't now. I have a Pur water filter at my kitchen sink and know I have control over it so use it for cooking, etc. Bottled water is always Spring - usually Zephyrhills and I buy it by the case. Congrats on how well you're doing, and thanks for all your comments. I do have to sign for my meds, but they will allow someone else to sign if I can't be here; once I did have to be gone to take my mom to an appointment and they used my signed note and left the box where I specified. Again, safe neighborhood, etc. I probably didn't miss the guy by 10 minutes and he wasn't even supposed to deliver until the next day, but to be safe I left signed instructions as I've had him deliver a day early every time and didn't want to miss getting it. I did breathe a grateful sigh of relief when I saw it and sure hope never to have to do that again.

Catniss, I've wondering how you were. I'm positive Katie didn't mean to upset you in any way. We all care about you and want the best for you. Feel a hug from me, and a group hug from all of us. We'll get through it a step at a time. I'm send you lots of positive energy and prayers that your lab report will be undetected too! ...Islandgirl

DeeDee · « **Reply #330 on:** January 18, 2015, 08:16:56 pm »

Katie, I am EST and thanks for shedding some light on the topic. My Fibrospect was FO-F1 <9 and the Dr said that was good. He also said my labs was good. It was just that HCV RNA. Yes I was happy that I didn't have any side effects but my appetite seem to change.

IslandGirl, Once I started drinking water it was Dansai and just yesterday for some reason I was looking at the Spring Water which I will switch over to now. I will look for Zephyrhills. I will google others just in case I can't find it.

I can"t say enough how happy I was that UPS came back because I was ready. I had did my research and was just waiting for the New Year to start Harvoni. My insurance said I have to sign for it at all times. Although a safe neighborhood they normally leave packages in the sun porch so I can understand and I won't miss when he comes back.

Have a good evening ladies and thank you

Lynn K · « **Reply #331 on:** January 18, 2015, 08:27:51 pm »

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.

DeeDee · « **Reply #332 on:** January 18, 2015, 08:29:55 pm »

Thanks Lynn

BattleTheBeast · « **Reply #333 on:** January 18, 2015, 08:40:16 pm »

Quote from: Lynn K on January 18, 2015, 08:27:51 pm

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.

I think Tap water in your neck of the woods is way better than it is in mine! Tap Water here is overly treated and tastes pretty gross to me!

Mel

Lynn K · « **Reply #334 on:** January 18, 2015, 08:48:03 pm »

Mine comes from a local lake but seems to have a high mineral content looks like calcium residue left on things so I guess I am getting extra calcium

Katie · « **Reply #335 on:** January 18, 2015, 09:05:54 pm »

We don't have wells here and outside of city limits we catch our rain water. We live in a rain forest and get close to 200 inches a year, sometimes more. The water is crisp, cool and sweet. Our city water, from a lake is treated heavily and I can't get it past my nose so am glad I am where I am! Pure water and I am learning to appreciate it more, lately! I wasn't drinking near enough and now I crave it. That's GOOD!

Have a good evening everyone! Off to fill up my water jug!

Katie

and I agree with Lynn on the plastics...plus you don't know the shipping conditions. Did it freeze, did it get really hot? Is the plastic OK in those conditions. Just saying.

BattleTheBeast · « **Reply #336 on:** January 18, 2015, 09:54:39 pm »

Katie,

You are so lucky to have that option. I agree with you and Lynn that bottled water isn't the best choice for everyone but for me given what my options are it's the best I have. They are only in upstate NY so it's not too far away and they use BPA Free

Funny thing is that about a month ago I emailed the company to have them notify me when and where I can start buying Gallon or 2-1/2 Gallon jugs. I am hoping they do the 2-1/2 Gallon soon.

Mel

Katie · « **Reply #337 on:** January 18, 2015, 10:11:00 pm »

Mel, I am lucky and realize those in many places don't have a good option. With our weather changing who knows what the future holds, although, fortunately the rain hasn't really let up. The past 2 summers many people had to buy water (from town

) because we had some dry spells and if you have a family with kids, the water in your tank goes quickly. I go into conservative mode as soon as they predict sunny weather and don't waste anything. Easy for me with my field camp background where we had to pack everything through the woods.

I know all of us are really health minded and do everything we can to protect our liver and do the best we can.

Getting a larger quantity would definitely make it easier and you know, if you have clear skies you could do a water catch too.

Good hearing from you!

Katie

BattleTheBeast · « **Reply #338 on:** January 18, 2015, 10:16:43 pm »

I live a little to close to a few major cities along with major pollution, this isn't really the place to do that. Perhaps in my next life I will have that option.

Mel

azsmitty · « **Reply #339 on:** January 22, 2015, 03:13:08 pm »

Hi everyone
I have completed one week of treatment and no side effects. I go for blood test at 2 weeks and a Dr. app't ten days later. I will let everyone know of any changes in blood work after my Dr. app't

Rich

Islandgirl · « **Reply #340 on:** January 22, 2015, 03:34:16 pm »

Hi Rich, glad you're on your way to FREEDOM! Hope your path is smooth - look forward to you keeping us posted!! ...Islandgirl

readynow · « **Reply #341 on:** January 22, 2015, 04:22:33 pm »

Blood work at two weeks; that's quick. I'm due for blood work at end of four weeks which is a couple more days. My Dr. is talking about eight week treatment total if
blood work is good. I'm treatment naïve with a lower viral count; around 5mil. Have to take it one day at a time, but remember its important to be our own advocates.

Ollie · « **Reply #342 on:** January 23, 2015, 11:23:02 pm »

Does anyone know the protocol for BloodWork post treatment? I'm undetected and no SE at 4 weeks.(yay) With lousy insurance it seems pointless to do the BloodWork again as I finish treatment at 12 weeks. Hoping I can wait and check my levels 24 weeks post treatment. Also, any knowledge if alcohol is detrimental post treatment . Fortunately my liver is not cirrotic.

Katie · « **Reply #343 on:** January 24, 2015, 12:11:27 am »

Don't drink ANY alcohol before you have finished your last post treatment test to be sure you are clear of the virus. When I know I am definitely clear, I MAY have a glass of red wine with dinner every once in a long while but certainly don't want to tax an already compromised liver and I do not have cirrhosis either. Just doesn't make sense. Your liver will heal over a period of time so best give it that time.

Katie

Post treatment testing: My understanding is they usually test at 12 weeks to make sure there is no virus replication but that would be up to your doctor.

Ollie · « **Reply #344 on:** January 24, 2015, 10:09:09 am »

Thanks Katie!

DeeDee · « **Reply #345 on:** January 24, 2015, 01:52:17 pm »

Good Morning, Afternoon, Evening,

Welcome Ready Now, Rich & Ollie

Ollie I agree with Katie, no alcohol and Katie it would be nice to have a glass of wine with dinner...but we can wait it out.

I will take my 14th pill this evening and no side effects...yay

Katie · « **Reply #346 on:** January 24, 2015, 01:59:24 pm »

Dee Dee..you are right. I haven't had one sip of alcohol in over 9 years and actually quit drinking a couple months before the Hep C diagnosis as it made me feel crappy,so I can wait a few more months. Actually don't really miss it at all. If you think about it there are lots of good drinks out there that taste better than an alcoholic drink and are better thirst quenchers too.

BattleTheBeast · « **Reply #347 on:** January 24, 2015, 02:15:52 pm »

My wine,beer, alcohol is Fresh Spring Water, in my opinion nothing tastes better!

There is no reason to put something into my body that's going to hurt it. I just can't see what the positive is, that's just me and I never was a big drinker anyway. I'd probably be dead now if I was.

I figure we are all being given an opportunity to be around a lot longer and way more healthy for many years. The cost to treat our infection is HUGE and if you think about all the people who can't get the medication you will realize just how damn lucky those of us on treatment really are.

I know it's a personal choice but IMHO if you choose to drink alcohol then why are you even on treatment? Just saying....

Mel

Katie · « **Reply #348 on:** January 24, 2015, 03:06:31 pm »

I totally agree Mel! I won't say I will never have a small toast with wine in the distant future, but it isn't something I am even considering at this point. Hepatitis isn't the only thing that can cause cirrhosis and alcohol definitely does, so like I said, why would you want to stress out an already compromised, vital organ with something so harmful to it. I didn't mean that in a couple months I would start drinking again as it is the last thing on my mind and I haven't missed it a bit. I was only responding to Ollie as he asked about it and sounded as if he was considering it.

Your energy and wisdom is always so positive and I love your posts!

Here's to a long, healthy and sober life!

Katie

BattleTheBeast · « **Reply #349 on:** January 24, 2015, 03:36:05 pm »

Hi Katie,

I hope you didn't think my post was an attack on anyone who makes a different choice than me because it wasn't meant that way at all, just offering my perspective on alcohol, why I choose not to use

Thank you for the compliments, it is honestly helpful for me to be as positive as possible and when I write it down it's good for my soul and helps me to remember what's really important.

Have a great weekend!

Mel

Katie · « **Reply #350 on:** January 24, 2015, 03:42:16 pm »

Mel, Of course I didn't! I just didn't want you to think I was stocking up my liquor cabinet in anticipation. HA!

We are all here for support and thank goodness we have each other.

Katie

BattleTheBeast · « **Reply #351 on:** January 24, 2015, 03:52:54 pm »

Ok good and I didn't think anything of the sort about you!

Anyway each of us chooses our own paths and we will deal with the consequences good or bad from them. Up to us to decide which one is right for ourselves.

I had many years of not eating right and hardly any exercise which wasn't the smartest thing. Having been hit with the Hep C diagnosis, being pretty sick in the beginning and realizing I had some choices to make I picked a path. Honestly eating poorly is probably almost as bad for our livers are alcohol is. I truly appreciate that I have been given a chance to be shocked into doing something about it. When we are young we don't think about limitations in life, when we are in our 30's and 40's we are just living it without worrying so much about the future. For me getting into the mid 50's, being diagnosed, being sick, well that changed me and hopefully for the better forever. This is one lesson I don't want to ever forget...

Mel

DeeDee · « **Reply #352 on:** January 26, 2015, 07:45:52 pm »

Good Evening,

I am not a drinker but occasionally when going out I would have a glass of wine, since being diagnosed I haven't anything. By the way I got some Poland Spring and that's my drink for now on.

Hugs

Ollie · « **Reply #353 on:** January 26, 2015, 11:10:29 pm »

It's great to read everyone's responses. I am def NOT considering a single drop of alcohol while on treatment. Prior to treatment my GI Dr. Said it was ok to have an occasional glass of wine. I was just wondering what info is out there re: post cure alcohol. Trust me, I'm am so thankful to my insurance company and HARVONI I wouldn't do anything to jeopardize the health of my liver now!

Katie · « **Reply #354 on:** January 26, 2015, 11:36:39 pm »

That's GREAT Ollie. I agree and am also so thankful to have this treatment and so Grateful to Michael Sofia for making the breakthrough on something that actually works for 1a.

Here's to crushing the alien monster and getting our lives back.

Katie

Islandgirl · « **Reply #355 on:** January 26, 2015, 11:44:43 pm »

Ollie and Katie, I'm just where you are. My GI did say that after successful treatment I should be able to have a glass of wine on occasion - she called it "quality of life", however, I plan to ask a lot more questions before I think I could be brave enough to let myself have that glass of wine. So, I'm also curious about any studies, personal experience, etc others may know about. I still have a pretty healthy liver and no cirrhosis, thank God, but I wouldn't risk any alcohol until way past treatment. I was never a big drinker but did enjoy an occasional glass of wine, but not anything I'd risk my health over. ...Islandgirl

Lynn K · « **Reply #356 on:** January 26, 2015, 11:47:57 pm »

Just a reminder to those of us who do have cirrhosis, alcohol is off the table completely even after beating hep c we still have cirrhosis so no alcohol for us ever.

catniss · « **Reply #357 on:** January 27, 2015, 07:41:16 pm »

Taking last pill tomorrow. Dr.app. and blood work Thursday. Kinda worried. Really hoping everything will be OK. Send positive vibes to Maine.

Katie · « **Reply #358 on:** January 27, 2015, 07:52:17 pm »

I'm keeping my fingers crossed for you catniss and am sure you will have good results. I find it totally remarkable how well everyone is doing and all of the low and UD viral loads in a short period of time. We all have a bit or worry creep into our thoughts, especially when waiting for results.

Hope you are staying warm and safe through the storm and healing thoughts sent to you!

Katie

catniss · « **Reply #359 on:** January 27, 2015, 07:54:00 pm »

Thanks Katie.

BattleTheBeast · « **Reply #360 on:** January 27, 2015, 08:16:27 pm »

Catniss,

You've got this!!!!!

Mel

Islandgirl · « **Reply #361 on:** January 27, 2015, 09:47:26 pm »

I know you're gonna be doing the Catniss Happy Dance very soon! Congrats on reaching the "last pill" point too

Tomorrow is my last pill on bottle two, Thursday I start my last bottle of 28. I'll be sending you positive energy and healing thoughts as you meet with your doc and have your labs done. Mel's right, "you've got this, girl"! ....Islandgirl

BattleTheBeast · « **Reply #362 on:** January 27, 2015, 10:30:47 pm »

Islandgirl,

That's pretty exciting for you as well. I think I will be the last one still on TX while everyone else is SVR! Guess everything happens for a reason but I feel like I am going to be on TX forever. Starting Bottle 3 of Harvoni on Saturday and not sure how many more to go, could be one or three after bottle 3. Wow that means on Friday I have completed 16 full weeks of TX. I sure have learned so much from everyone and I really do feel so much better.

Just need to focus on that, it's what's important and I'd rather keep going now then relapse and have to start over again!

You guys all better stick around or I will chase you down!!!!! Brad's got a big test next week too!

Tomorrow am IDHero Appointment, haven't seen him in a month. My hands seem to be swelling again so he may send me for some blood work. He'll do a full work up if he does.

Mel

Islandgirl · « **Reply #363 on:** January 27, 2015, 11:09:17 pm »

Thanks, Mel! I hope your appointment goes well tomorrow. Brad, I hope your test goes well too!

I hope I remain undetected, but I remind myself from time to time that the important thing is to keep doing what it takes to reach cured. None of us want a relapse, yet it could happen, but it just means we have to keep on the treatment path with Harvoni or another drug until we reach cured. I'm not being negative, just trying to keep myself grounded so I don't crash and burn if I don't always have perfect results.

You truly are an inspiration and I respect and admire your courage and positive attitude more than I know how to express. Gotta stay around to see how all my buds are doing - I don't want to deal with separation anxiety on top of everything else

...Islandgirl

Katie · « **Reply #364 on:** January 27, 2015, 11:20:12 pm »

My treatment "ends" February 25th and I certainly will be on this forum for another 6 months to see how everyone is doing and to reassure myself those cleared, stay that way, so you are stuck with me Mel!

I love the separation anxiety IG! I actually was thinking about how much I am going to miss everyone once we get on with our healthy lives. Maybe we could start a blog so we could keep in touch. I am not good at something like that but I just bet someone on here is!

You are a true warrior Mel and have inspired all of us. We won't let you down. Hope everything goes well!

Katie

Katie · « **Reply #365 on:** January 27, 2015, 11:25:03 pm »

Island Girl: I am curious if you are having 8 week blood work? We are on the same schedule and my doctor is just treating me now at the end of 12 weeks. Guess it doesn't matter as it's the post treatment UD we need to have but it is nice to know if it has dropped off more, since I was still detected at 59.

I just have to concentrate on the positive and stomp out the worry wart in me.

Katie

BattleTheBeast · « **Reply #366 on:** January 27, 2015, 11:48:35 pm »

Thanks so much ladies,

Honestly by me writing positive thoughts it helps to keep me positive. I was in such a fumk for so long, now we all know why. Thanks to the beast I lost myself in the dense fog for way too long and didn't even realize it. I actually was almost anti-social which I know sounds really hard to believe but I lost my spark if that makes sense. I want it back and I am trying so hard to claim it. The damn beast hurt me for way to long and it's time for me to enjoy my life again.

I hope all of us have that opportunity. I really hope that when I am cured I can help bring awareness to people. I hope the Pharma's start working on a Vaccine for it.

It's time for the beast to go down once and for us, not just for us but for everyone.

Hugs to all,

Mel

Katie · « **Reply #367 on:** January 27, 2015, 11:57:21 pm »

Mel, I understand exactly what you mean, Well before I was diagnosed, I had thrown a birthday party for a friend and it just wore me out so bad, I think that was the last good sized get together I hosted. I was talking to a dear lady and she asked if I was tired, and I told her...I've lost my spark, and I can't figure out why.

I am a loner to begin with but always enjoyed entertaining a couple times a year, but it has been years since I had more than 3 or 4 people at a time. It just became too much and I really have spent the last 5-8 years in solitary confinement, other than when I was at work. I always tell everyone my social life consists of grocery shopping and doctor's appointments! Sad but true, and maybe that will change once this journey is complete.

Good night ladies!

Katie

kate0b1 · « **Reply #368 on:** January 28, 2015, 06:21:34 am »

@mel, where else would we be lol, and by that time it will be warm and you and i will be out mall walking.

kate

BattleTheBeast · « **Reply #369 on:** January 28, 2015, 07:31:32 am »

Kate,

I am not ready to be a mall walker, perhaps we can be in the great outdoors!

Mel

Islandgirl · « **Reply #370 on:** January 28, 2015, 08:51:00 am »

Good morning everyone

I'm not ready to be a mall walker either, Mel, but the weather you guys have now might make me try it! I know what you guys mean about losing your spark - that describes me as well and I only seem to get it back (a bit) off and on. I'm better than I was, but not there yet and lack the energy it takes to push myself for more than a couple of days or so at a time. And, like Katie, I've always been a bit of a loner too.

Katie, on my lab work schedule - I had blood work done at 4 wks and 6 wks, then my doc appt to discuss them. She (my GIGoddess? GIHeroine?

gave me lab sheets for one month after treatment ends Feb 25 (same as you) and for 6 months after that - so March 25 and again September 25. I guess they all vary a bit? She was so pleased with the labs in January she said she doesn't think I'll need to even come in to see her, just call for the results. I'm not sure I'm ready to cut the umbilical cord yet (me and my separation anxiety?

) I never realized how hard it would be to trust that I could really be cured! Guess that's one more thing I need to work on

I really identified with your comment "I just have to concentrate on the positive and stomp out the worry wart in me".

Thank you all so much for always being there! ....Islandgirl

PS, Looking forward to hearing about your appointment with your GIHero this morning, Mel! Sending you hugs too!

catniss · « **Reply #371 on:** January 28, 2015, 04:40:14 pm »

Wow. Lab work schedules really vary. I am having my first one done tomorrow after finishing 8 week treatment today. Then again in 6 weeks then the final one 6 weeks after that. Just praying everything goes well tomorrow. Then in 6 weeks. Never been a mall walker. You will find me at the gym pumping iron. Trying to fight middle age and the lovely side effects it comes with.

Katie · « **Reply #372 on:** January 28, 2015, 05:14:38 pm »

Congratulations on your End of Treatment!!!

Here's to your cure and I can't wait to Cheer you on, Catniss!

Katie

I prefer pumping iron too but am really limited with all of my joint issues. Just got a bionic knee brace and that's helping to walk, but no Mall Walking for me either!

Islandgirl · « **Reply #373 on:** January 28, 2015, 05:34:30 pm »

Good luck with your appointments tomorrow Catniss - I know everything will be just great! BTW, I think the mall walking was just sort of a joke because of all the snow in the frozen North

However, for some people it might be their only option - depending on their health and the terrain. Here's to moving it no matter how you have to do it!! Haven't been able to use my gym one time this year, but it's on my list

....Islandgirl

catniss · « **Reply #374 on:** January 29, 2015, 02:33:31 pm »

So had my doc appointment and blood work this morning. I might actually have results tomorrow because the lab runs this test on Thursdays. Doc is quite confident I will be UD. Follow up blood work was a bit confusing. She said my next blood work woud be in 3 months if UD now. I can do it at 6 weeks if I want but if I'm UD then it still does mean I would be 6 weeks after that. She recommend me just wait the 3 months but my thinking is if god forbid I relapse at 6 weeks post I could start the next treatment that much earlier. Opinions?
PS
Well aware about the snow. I was out shoveling all day Tuesday in the blizzard and more to come tomorrow. Having my second massage this week because of sore muscles and stress.

catniss · « **Reply #375 on:** January 29, 2015, 02:37:38 pm »

Post correction
If I'm UD at 6 weeks it does not mean I would be UD at 3 months. Hope everyone understands my gibberish.

Katie · « **Reply #376 on:** January 29, 2015, 02:47:14 pm »

I guess they figure 12 weeks is due to the replication time of the virus and I will need to wait that long too. For my peace of mind, I'd prefer another 6 week test but the insurance companies probably don't like the cost. That's just my opinion. I am not real good at waiting so I think that'll be the most difficult part of the treatment.

Good luck Catniss. We are all rooting for you and sending positive energy! Your success gives all of us hope!

Katie

badbradley · « **Reply #377 on:** January 29, 2015, 02:50:50 pm »

Hello catniss,
I personally chose to wait out the12wks for the SVR12test. If my liver condition was more dire, i would definitely have wanted the 4 wk post treatment VL test! As you have reasoned also, the sooner you know the sooner you can get started with a new plan.
You are correct that UD at 6wk post treatment does not mean you will be UD at 12wks post treatment, but it is a very good indication that it will be most likely.
My wait is almost over. Test next week. I hope and pray it was worth the wait!
Good luck! Brad

catniss · « **Reply #378 on:** January 29, 2015, 03:11:54 pm »

Brad
OMG! Will be sending you lots of positive energy next week.
Katie
I know exactly what you mean about peace of mind. That is why I'm considering the 6 week test. But then another part of me just wants to say let it be for the 3 month. Then it will hopefully be over once and for all. The doc did say I do not have to make a decision right away.

Katie · « **Reply #379 on:** January 29, 2015, 03:28:51 pm »

Brad: We will all be cheering you on and are probably as anxious to hear as you. With the treatment being so new, every step has implications for all of us. I am starting my final bottle tonight and the past 8 weeks and the coming 4 will go by much faster than the post treatment 12.

Congratulations for making it to the end of your journey with this alien monster!

Catniss: It's great you have that option and you can decide depending on how you feel. Whatever you decide, please keep in touch with you progress. I'm thinking everyone is going to sail through this (except me; that seed of doubt creeping in every once in awhile, but I stomp it back with a healthy ferociousness

) I know everyone has those thoughts once in awhile and know those thoughts are probably common so I stop them in their tracks so they can't grow and hope you can do that too! It's hard sometimes.

Good luck to you Cat!

Katie

Hepfreein15 · « **Reply #380 on:** January 29, 2015, 04:12:49 pm »

I am new here and this is my first post. But I saw my dr yesterday and we are submitting insurance paperwork for HARVONI. My liver is in great shape ( 2 biopsies) and was diagnosed late 2008. We agreed I could wait and the traditional treatment wasnt very appealing. Thank you to all who post here as it makes me feel so much better about trying this.

I am anxious and nervous about it all but I am a fighter and am ready to be hep C free. Any advise you can give me is greatly appreciated and I will post here ofetn for encouragement and support. Thanks

Katie · « **Reply #381 on:** January 29, 2015, 04:23:32 pm »

Welcome HF-15, and you'll come to really appreciate the support and information on this forum. It is so beneficial to share our battle with those going through the same thing. With your good health you shouldn't have any problematic side effects. It has been a really easy treatment for most of us and much, much better than the old one. It is definitely a miracle drug and we are all blessed this breakthrough came about to help us.

My advise for starting treatment is eat well, rest as needed and drink lots of water to flush out the toxins. I am feeling better than I have in years and actually feel 10 years younger. I have minor little things come and go, but am not even sure if they are from the treatment and most of the changes have been positive in my case.

Wishing you the best and congratulate you on getting on Harvoni!

Katie

catniss · « **Reply #382 on:** January 29, 2015, 06:02:45 pm »

Welcome HF-15
Congrats on starting harvoni. Like you my liver is not in bad shape although I was diagnosed in the 90's. I just completed my 8 week treatment with no side effects at all. I had my first labs done this morning. I was also offered the earlier treatment but really was not option because of side effects. I have only had 1 biopsy(last year). This is a good place for questions and support.
Have a good night.
Catniss

Hepfreein15 · « **Reply #383 on:** January 29, 2015, 07:10:30 pm »

I will post here often .. it could be 30 days before I get my RX but fortunately I was told my insurance has covered it. Feeling very lucky.. just waiting for approval and delivery. Love having the support. There are no support groups in my area for people with HEP C . TY Cat and katie

Lynn K · « **Reply #384 on:** January 30, 2015, 04:11:22 am »

I am thinking about asking my doctor not to do the end of treatment viral load and instead do the test at week 4 and the do the 12 week post. Especially as I relapsed on sovaldi olysio last year I could do without the 12 weeks of total drama

BattleTheBeast · « **Reply #385 on:** January 30, 2015, 05:05:02 am »

@Hepfree - So glad you decided to join in, I hope you find the forum to be as supportive as I have. Great bunch of warriors in this crew! Katie beat me to the punch with the most important things and I totally agree with her advise;
1. Water water and more water
2. Make healthy food choices, the cleaner you eat the easier it is on your infected liver
3. If you need a nap take one, if you feel like a walk, take one. Basically some exercise when you feel up to it, even just walking. It's good for the soul to be up and moving. I tell myself I am shaking out those like boogers so the Harvoni can annihilate them.
4. It's ok to share here, no one will attack you (if they do they will be bombarded) . It's really good to be able to let it out in a safe place. I totally whined last night!
5. No extra meds, vitamins, antacids, etc unless you clear it with your Doc or Gilead

Take care of yourself, listen to your body, sleep in when you need to.

Mel

kate0b1 · « **Reply #386 on:** January 30, 2015, 06:05:41 am »

@hepfree, i don't know who your ins co is (and we have had many ins woes here lol) but weirdly the beginning process went very smoothly and easy, i was approved and sent my first meds within 2 weeks, (after that a story for a different day), anyway welcome and i hope it goes smooth for you

kate

Islandgirl · « **Reply #387 on:** January 31, 2015, 12:40:57 pm »

Welcome, HF-15! Sorry to be so long in welcoming you - darn computer issues had me missing out on everything and everyone

I'll simply reconfirm that you're with a great group of nonjudgmental, supportive and knowledgeable people here and it's invaluable to have a Forum Family like this. I hope your insurance and med delivery process goes smoothly and quickly. I got my letter of insurance approval (be sure to keep this handy throughout your treatment) the same day I heard from my Specialty Pharmacy. If the co-pay is too high, start with your SP to see what help is available - next try Gilead through the support path; CALL them. Again, welcome!

Catniss and Brad, congrats on kicking some dragon and sending everyone more positive energy as those test results come in. Keep on kicking

...Islandgirl

DeeDee · « **Reply #388 on:** February 01, 2015, 01:56:31 pm »

Good Morning, Afternoon, Evening

Welcome HF-15, you will find this forum so interesting and supportive, so welcome again. I was pretty much like you and waited for the New Year to start. I am on my 22nd pill today. I have had no side effects and leaning to drink water, water and more water. I am looking forward to starting my second bottle next week and seeing the Dr on 03/09. I have everyone in my prayers.

WaltFrazier · « **Reply #389 on:** February 02, 2015, 10:13:22 am »

Hello All. I've been following this forum for the past 7 months and recently started participating in the forum. My quest for Harvoni/Solvaldi began in July (After relapse on INTRN in 2007). My Old insurance would not pay...I fought and fought and finally decided to switch insurance to one that had it on there formulary. Well 7 months later, I was told my Harvoni will arrive Wednesday. With the Co pay coupon it will cost 5.00. Needless to say, I'm elated but will wait til its actually at my door!. I also have PCT so my skin has been a mess. My Dr advised it will help it tremendously...Anyways great to be sharing this life changing news...Tight lines all!

DeeDee · « **Reply #390 on:** February 02, 2015, 02:03:50 pm »

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.

Katie · « **Reply #391 on:** February 02, 2015, 02:15:06 pm »

Hi DeeDee...you've made the long journey and the end is just around the corner. The rash may be unrelated or maybe not but I would see your primary to get his opinion. Is the rash painful or itchy? Others have experienced a rash and I think everyone's reactions are a bit different as there are so many variables including other health issues.

Personally, I would take the medication and if any other allergic type reactions occur then get to the doctor. It may go away on it's own. => Revised. See next post.

Anyone else with a rash issue can speak to this better than me. Maybe post your question under the side effect thread.

Good Luck and hang in there.

Katie

Katie · « **Reply #392 on:** February 02, 2015, 02:23:25 pm »

Dee Dee, Just so you know, I am not allergy prone so I'm not speaking with any knowledge, but from seeing some friend's experiences, it can be serious, so I encourage you to get it checked out. No sense in taking chances.

Katie

BattleTheBeast · « **Reply #393 on:** February 02, 2015, 03:04:10 pm »

Quote from: DeeDee on February 02, 2015, 02:03:50 pm

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.

Hi Deedee,

Here's where you can get the co-pay coupon: https://www.harvoni.com/co-pay-coupon-registration

It's up to you whether to take the medication or not but I would consult with my doctor before stopping the treatment. It could be something as simple as a detergent change, soap change, lotion, a food allergy, who knows but it is a little odd for you to develop a rash from something you have been on a while with only 4 days left.

Hopefully you aren't snowed in or ice in like some of us in the NorthEast and you can get the rash checked out before you make the decision to stop the meds.

Mel

WaltFrazier · « **Reply #394 on:** February 02, 2015, 03:48:11 pm »

Quote from: DeeDee on February 02, 2015, 02:03:50 pm

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.

DeeDee, BTB posted the location of the copay coupon, Thanks !

Lynn K · « **Reply #395 on:** February 02, 2015, 04:04:09 pm »

Hi Dee Dee

Providers and patients can call 1-855-7-MYPATH (1-855-769-7284) for assistance

From the same link

Pay no more than $5 per co-pay for HARVONI

We believe that cost should not be a barrier to receiving treatment. That’s why the makers of HARVONI offer a co-pay coupon. If you are eligible, you may pay no more than $5 per co-pay. Some restrictions may apply. See Terms and Conditions below.

Co-pay Coupon Terms and Conditions

The HARVONI co-pay coupon program will cover the out-of-pocket costs of your HARVONI prescriptions after you pay the first $5 per prescription fill, up to a maximum of 25% of the catalog price of a 12-week regimen of HARVONI. The offer is valid for 6 months from the time of first redemption
For residents of the 50 states, District of Columbia, Puerto Rico, Guam, and the Virgin Islands. Prescriptions must be filled by a pharmacy in these locations
The coupon is limited to one per person and is not transferable
Coupon is not valid for prescriptions eligible to be reimbursed:
in whole or part by Medicare, Medicaid, or any other federal or state-funded healthcare benefit program.

kate0b1 · « **Reply #396 on:** February 02, 2015, 05:44:53 pm »

@deedee, i was sent an email with a coupon for $5 co-apy (otherwise it would have been $36) witch i would have gladly paid, but wow 5 dollars a month

. bottle #3 should be here sat (last one).
and like everyone else, you should maybe speak to your doc about the rash and certainly about stopping meds.

kate

Mugwump · « **Reply #397 on:** February 02, 2015, 07:21:41 pm »

DeeDee I would be extremely surprised if your rash is caused by a reaction to Harvoni. It is very unusual for a strong and dangerous allergy rash reaction to happen without secondary symptoms.
You are almost at the end of treatment and for me having gone through treatments that were much worse, there is no way I would stop unless a doctor specifically told me and there was proof that Harvoni was killing me or going to leave me in a hopeless state instead of remove HCV from my system.

On the bright side my current blood work shows all liver functions as completely normal after 9 weeks of pills. For the first time in over 30 years I am sure that if someone was exposed to my blood it would not infect them. I am one happy camper, to me this is a real chance at life without constant worry about someone using your towels, razor or God forbid tooth brush by mistake. Let alone the constant worry about a loved one, dentist, doctor, paramedic, nurse or other medical professional being accidentally exposed to my blood!

Now I can go fishing with my ham fisted friend who couldn't fly cast his way out of a paper bag and not worry about the big steelhead flies that he seems to aim straight at whom ever is fishing withing 40 feet of his 13 foot rod tip! He seems to think he is the greatest spey rod flogger on earth but no one wants to fish with him....HMMM I wonder why

DeeDee · « **Reply #398 on:** February 03, 2015, 05:42:12 am »

Good Morning,

Thank you so much Lynn, Kate and Mugwump for the support/encouragement.
I spoke with MyPath and they are working on the coupon.

The Dr. suggested a coritzone cream which I will pick up today. Did not say which one, I will ask at the pharmacy. Primary wasn't available.

I will call in the next bottle on Wednesday...just was frantic over the rash.

Thanks again and have a good day everyone.

catniss · « **Reply #399 on:** February 03, 2015, 09:17:31 am »

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.

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