Author Topic: Started Treatment this week (Read 56940 times)

csolisnfl · « **on:** September 04, 2015, 05:43:30 pm »

Just wanted to stop in and say 'Hi' to all the folks out there with Hep C, or former Hep C positive folks. It has been a struggle for me but my wait for good health has now been shortened immensely and I am totally excited.

I got Hep C in basic training(airguns used for inoculations were suspect and still are), and was not diagnosed until 2004. I was pressured to do the Interferon/Rabaviron treatment, but held out hope for a better solution. Meanwhile I used Oxymatrine to keep the virus somewhat under control as my brother is a practitioner of TCM (Traditional Chinese Medicine) along with other herbs to strengthen my body.

After having the typical battle with the VA, I have now been approved and started treatment (Harvoni - 8 weeks). I am so excited about finally getting treatment for a disease I have had 40 years.

My Viral load has bounced around the charts from 4 million to 10 million, but my AST and ALT levels had been increasing over the last year or so and my liver has enlarged to some degree over the last year. Now is my time to get things moving.

So far after 4 days on Harvoni the worst side affect was a mild headache on the first day. I have been drinking plenty of water since then and it is working. Hope to get my signature block filled out soon, and will keep it updated as test results come in.

Keep hoping always
Better days are yet to come.

C. Solis

Philadelphia · « **Reply #1 on:** September 04, 2015, 06:36:55 pm »

All the best for a successful treatment.

gnatcatcher · « **Reply #2 on:** September 04, 2015, 07:54:39 pm »

Welcome, csolisnfl! We have in common a VL that has bounced around a lot during 40 years (44 for me), plus we both resisted much pressure to do the Interferon/Ribavirin treatment. These forums had tipped me off to drinking lots of fluids from Day 1, so I have had few side effects (I'm already in Week 9 of 12 on Harvoni), and they have been very mild. Wishing the same or even better for you.

Gnatty

KimInTheForest · « **Reply #3 on:** September 04, 2015, 07:58:03 pm »

Congrats on starting treatment, C. Solis! And best of luck with it. I look forward to your news.

best,
kim

csolisnfl · « **Reply #4 on:** September 04, 2015, 09:15:55 pm »

Thanks to all of you for the wishes and welcome. I pray you all have a safe and easy journey with your treatment.

Scoutdoy · « **Reply #5 on:** September 05, 2015, 03:34:58 am »

Hi Cslo, welcome to the treatment train. I started my 12 weeks on Harvoni on July 27. Good luck to you and hope you don't experience many side effects. Mine have been very very minimal. My docs think that I too probably picked up the hep while in the service in the 80's from the vaccination airguns. People don't realize that those of us who were in the service were lined up like cattle and one gun was used to vaccinate many many people. I hope they don't still use that method for the service men and women now

Scout

csolisnfl · « **Reply #6 on:** September 05, 2015, 09:14:59 am »

Hi Scout, yes you are correct about those airguns used for vaccinations. Previous models had an 'acceptable' infection rate of 11%, while the newest models in use have only 8%. That is really poor odds in my opinion. Why take the risk at all, why not individual immunizations? Maybe we shall just call it 'friendly fire' or something else to excuse ourselves.

Are you also being treated via the VA, Scout?

Scoutdoy · « **Reply #7 on:** September 05, 2015, 10:12:38 am »

Your right on the percentages...that is just unacceptable. No, I am not being treated by the VA. My husband and children are on my insurance through work, so I had to carry myself on the policy. I am glad I did, because I have some friends that are going through the VA and they are still fighting to get approved because they are not sick enough. Luckily my ins. through my job is really good and even though my numbers are really good and I have no liver damage I was approved on the first attempt. I am very grateful for that. I feel good and have suffered very little side effects, so I am hoping to conquer this nightmare that I have been dealing with for years and moving on with my life.

Scout

csolisnfl · « **Reply #8 on:** September 05, 2015, 10:18:47 am »

Well Scout, the next question is.... What are we going to do with all the energy we will have after the virus is conquered? I have read stories of people having to reassess their lives because they now had energy to do things they didn't before. My energy levels have fluctuated and I have had to arrange my life accordingly, getting things done as the energy arrived.. Now with an abundance of energy I will have to find more projects to fill the new time slots. Ha ha ha!!

Wishing you every success with your treatment!

drummerman · « **Reply #9 on:** September 05, 2015, 10:28:40 am »

Welcome C. Solis!

Lots of good helpful advice around here.

I read alot about the inoculation guns used by the military esp. during the vietnam war...pretty scary.

Harvoni will kick hcv ass though!

dm

csolisnfl · « **Reply #10 on:** September 05, 2015, 10:33:06 am »

Thanks Drummer! I am hoping that is the case. I wonder why I am on 8 week treatment whereas I see most here are 12 weeks. Yes, I am a Vietnam era vet, but from what I understand Genotype 1a is more common in the US than in Asia, so the source of the virus is suspicious to say the least.

Lou66 · « **Reply #11 on:** September 05, 2015, 11:14:36 am »

Stay strong, buona fortuna.

csolisnfl · « **Reply #12 on:** September 05, 2015, 11:38:06 am »

Thanks Lou.. Best of Health to you!

gnatcatcher · « **Reply #13 on:** September 05, 2015, 12:43:55 pm »

Quote from: csolisnfl on September 05, 2015, 10:33:06 am

. . . I wonder why I am on 8 week treatment whereas I see most here are 12 weeks. . . .

C. Solis, you’re on the 8-week treatment because Gilead says 8 weeks can be considered in genotype 1 treatment-naive patients without cirrhosis whose VL is <6,000,000. Unsurprisingly, insurance companies interpret "can be considered in" as meaning "are enough for."

Gnatty

drummerman · « **Reply #14 on:** September 05, 2015, 01:50:51 pm »

Quote from: csolisnfl on September 05, 2015, 10:33:06 am

Thanks Drummer! I am hoping that is the case. I wonder why I am on 8 week treatment whereas I see most here are 12 weeks. Yes, I am a Vietnam era vet, but from what I understand Genotype 1a is more common in the US than in Asia, so the source of the virus is suspicious to say the least.

8 weeks?? are you treatment naive? Thats usually the case. You were smart to hold out and wait. Some suspect that previous tx creates stronger mutations of the virus. I think there is controversy about this, but better safe than sorry. At least you got harvoni , which can cause joint pain, but at least you don't have to deal with riba. Riba and I do not get along.... at all.

Anyway, I read that the even though you may have received your inoculations in the east, soldiers, already infected from the u.s. , with a virus that they didn't even know at the time what is was, were spreading it due to insufficient cleaning, wiping of the gun between patients. Least thats my understanding.

Also, some say, you can drink too much water resulting in headaches...its a delicate balance. I think the formula is take your weight, divide by 2 and drink that many ounces per day. ... so you weigh 180lbs, you drink 90 oz of water
per day. Someone correct this if the formula is wrong.... Although I drink more and have never had problems.

You should have no problems.

dm

csolisnfl · « **Reply #15 on:** September 05, 2015, 02:14:12 pm »

Thanks Gnat and Drummer for the replies. Would make sense if I were using insurance, however I can see the VA using the least expensive route available. And yes, I am tx naive, no cirrhosis that was detected. Don't drink or do drugs and have maintained as healthy a life style as possible barring heavy exercise though I do walk. Just hoping that I get through this with flying colors (as they say).

Bless you all!

Scoutdoy · « **Reply #16 on:** September 05, 2015, 05:25:13 pm »

You will CSO...I had the 12 weeks because my viral load was 13.9 million. Big number. My surprise when I got lab results last week and it said negative. I have found that if I take the pill too late in the day I have a little trouble going to sleep so I try to take it by noon everyday and on an empty stomach. Everyone is different though. Don't be surprised if you end up changing the time of day you take the pill. What works for one person doesn't work for another.

Scout

drummerman · « **Reply #17 on:** September 05, 2015, 09:05:37 pm »

"however I can see the VA using the least expensive route available"

Nope, if they wanted the cheapest they would have gone with viekira pak and 8 wks is soc for tx naive. .. i'm pretty sure.

dm

Scoutdoy · « **Reply #18 on:** September 05, 2015, 09:14:35 pm »

Drummerman your numbers sure are looking good!!! Congrats

Scout

csolisnfl · « **Reply #19 on:** September 05, 2015, 09:34:40 pm »

Drummer, that is an interesting observation about which meds to use to reduce cost. Makes me wonder why they are not using Viekira pak unless they have a contract with Gilead Science. All in all I felt as though Gilead was holding so many of us hostage over prices. I had even tried to go the VK pak route through a program, however the VA refused to sign the forms with the information as they had me on 'the list' for treatment.

drummerman · « **Reply #20 on:** September 05, 2015, 10:57:15 pm »

Quote from: Scoutdoy on September 05, 2015, 09:14:35 pm

Drummerman your numbers sure are looking good!!! Congrats

Scout

thanks scoutdoy!
dm

Rosie13 · « **Reply #21 on:** September 05, 2015, 11:00:54 pm »

Hi csolis! Looks like we are Harvoni buddies......just started today.
I have been given the 8 wk. treatment also due to low viral load.It jumps around but this time it was 192,000.My Dr.@Mayo Clinic wants me to get 12wks but will look at my 2 wk & 1 month blood work to determine when to ask insurance to cover one more month.I was really worried @ first but her reasoning makes sense.Looking forward to sharing our journey with all the forum members. I did drink lots of water today& had no headaches YES!

KimInTheForest · « **Reply #22 on:** September 05, 2015, 11:06:49 pm »

Congrats on starting treatment today, Rosie!

kim

Rosie13 · « **Reply #23 on:** September 05, 2015, 11:16:50 pm »

Thanks Kim! You are my inspiration! It is an incredible thing everyone is doing to share & help us all cope .I sat there today with the pills frozen in fear ...few minutes later was fine .Are you feeling any better? Prayers for you tonight

csolisnfl · « **Reply #24 on:** September 05, 2015, 11:50:50 pm »

Gratz Rosie on starting your treatment!! So glad there is hope for all of us now. I have been headache free from the start. Today was day 5 and I was a bit fatigued, but we can expect that. Heck I was more tired before starting treatment, however the first 4 days I had more energy than I knew what to do with.

Kim, I am taking my Harvoni at 8 in the morning, right after walking my pooch for a half hour or so, then eating my breakfast. I am wondering about the calcium I need for the osteo. It is a moderate concern about absorption, but the Harvoni should be absorbed by noon, and I could take it then so it doesn't interfere with sleep. (Vit D and magnesium have a tendency to keep me awake).

Has anyone else been advised not to take calcium while on Harvoni?

KimInTheForest · « **Reply #25 on:** September 06, 2015, 12:19:37 am »

Hi Rosie. I am much better now, thanks! My mystery illness/fever post-treatment went away finally. I was deficient in B-12 and iron so am taking supplements now. My appetite has finally returned, so I think things will work out fine. was scary for a while getting so sick immediately post-tx.

Hi C. Solis. I had the same concern about calcium - mainly because I am a big milk drinker, especially in the morning with cereal. I worried that the milk would temporarily reduce my stomach acid at same time I was taking Harvoni, which might reduce absorption of ledipasvir. I worried about that quite a bit during treatment. But it does not seem to have made a difference in the end. So I think milk is ok as far as Harvoni goes.

I think the problem is with calcium carbonate (as in Tums) and not straight calcium in milk. Tums can't be taken 4 hours either side of Harvoni. If you take a calcium supplement, I would check the label to see if it is calcium carbonate. If it is, I would maybe schedule it 4 hours away from Harvoni time…

best to all,
kim

Bree · « **Reply #26 on:** September 08, 2015, 05:27:13 pm »

Welcome Csolis and Rosie to the world of Harvoni! I love Harvoni!
I'm in week 9 - 3 weeks to go. Mild symptoms have waxed and waned but overall, nothing compared to living with Hep C and also previous treatments.

I'm feeling joyful, hopeful and optimistic and when I fall into fear, I make every effort to redirect my thoughts and actions to believing in being cured, once and for all! I'm wishing the best for all of us!

KimInTheForest · « **Reply #27 on:** September 08, 2015, 05:38:35 pm »

Quote from: Bree on September 08, 2015, 05:27:13 pm

Welcome Csolis and Rosie to the world of Harvoni! I love Harvoni!
I'm in week 9 - 3 weeks to go.

Great that you are 3/4 of the way done already, Bree! You got this.

kim

gnatcatcher · « **Reply #28 on:** September 08, 2015, 05:50:04 pm »

Howdy, Harvoni Buddy Bree! (You started three days before I did.) Onward to the finish line! Rosie and C.Solis, you're not far behind. You'll be done before you know it, and Kim, Scout, and drummerman are great teammates to have along for the journey.
Gnatty

Bree · « **Reply #29 on:** September 08, 2015, 06:26:57 pm »

Thanks Gnatty! I missed everyone. I had to take a break from the forum for a few weeks mid-treatment...my mind fell into fear for a number of reasons and I got scared about my treatment plan, or rather fear over wanting the results I want (being human and all)... so I had to take a break, re-focus, get positive by "acting as if" to get myself believing again that this can and will happen for me. I had a few friends help me with mindset, etc. We all need as much positive encouragement as we can get right now.

I'm doing really positive things which helps...alternating yin yoga, swimming (water aerobics class), massages, practicing gratitude... as nurturing and conducive to doing my part on this journey as I'm able to right now. My best advice... nurture yourself any way you can while on treatment (and beyond for that matter)!

gnatcatcher · « **Reply #30 on:** September 08, 2015, 09:00:38 pm »

Bree, you are not the only person on this forum who had to clear out some bad vibes and refocus. Just today, annajustanna posted that she had to quit reading a thread that was depressing her. I had to take time off in order to recenter myself a week or two ago. I recall a fourth person posting on that same theme but can't remember who.

Practicing gratitude has been scientifically shown to be extremely beneficial. Your advice on self-nurture is right on!

I just read a great book on the benefits (to our health, longevity, etc.) of choosing a good mindset. In case you're interested, it is The Upside of Stress: Why Stress is Good for You and How to Get Good at It by Kelly McGonigal, Ph.D.

drummerman · « **Reply #31 on:** September 08, 2015, 10:04:47 pm »

That being said, I think we all need to be careful what we say. I know I often complain too much and talk about sides way too much as well.

A lot of people, myself included, can be greatly influenced by what they read and are very open to the power of suggestion.

I have heard of some docs telling their patients not to read the forums... while I don't agree with that and have learned so much these past 10 years.... I kind of see their point sometimes.

dm

drummerman · « **Reply #32 on:** September 08, 2015, 10:06:44 pm »

Quote from: gnatcatcher on September 08, 2015, 09:00:38 pm

I just read a great book on the benefits (to our health, longevity, etc.) of choosing a good mindset. In case you're interested, it is The Upside of Stress: Why Stress is Good for You and How to Get Good at It by Kelly McGonigal, Ph.D.

upside of stress!!! I gotta get this book. Stress is my middle name.

dm

csolisnfl · « **Reply #33 on:** September 09, 2015, 08:52:04 am »

Okay, started week two yesterday and things are going swell. Only a few days of fatigue the first week, but this week is something of a wonder. Been outside working in the greenhouse. Got the first two trays of my hydroponics system done and finally attached the posts to the deck in a more permanent fashion that hold the sunshade. Mowed, weeded the garden, and just got more exercise in general. Also noticed I am not requiring as much sleep as before treatment, and the dull ache in my upper right quadrant has ceased for the most part. Whoo hoo, I am on a roll!!

csolisnfl · « **Reply #34 on:** September 14, 2015, 04:06:54 pm »

I have a question, hope someone knows. I started another UTI last night, so I took my normal course of Echinace/Goldenseal to combat it. (Works wonders by the way). You think I should take it in the evenings since I take the Harvoni in the mornings?

I have not found any adverse effects or contraindications of taking it while on Harvoni.

drummerman · « **Reply #35 on:** September 14, 2015, 08:12:27 pm »

Quote from: csolisnfl on September 14, 2015, 04:06:54 pm

I have a question, hope someone knows. I started another UTI last night, so I took my normal course of Echinace/Goldenseal to combat it. (Works wonders by the way). You think I should take it in the evenings since I take the Harvoni in the mornings?

I have not found any adverse effects or contraindications of taking it while on Harvoni.

I wouldn't take it at all...
and I am big on supplements.... but when I started tx , I put em away. Just didn't want to take any chances...I mean, you never know. I didn't want to risk it.
Thats just me. I tend to be very cautious.
At the very least , you should call Abbvie and talk to one of the tech pharmacists. Just for peace of mind.

dm

csolisnfl · « **Reply #36 on:** September 14, 2015, 08:14:06 pm »

Good idea, Drummer, I will call Gilead and see what they say. I cannot deal with UTIs for long.

drummerman · « **Reply #37 on:** September 14, 2015, 08:22:41 pm »

You can't be too careful... but yeah, UTI is a botch... gotta do what you gotta do.

dm

csolisnfl · « **Reply #38 on:** September 14, 2015, 09:24:31 pm »

Spoke with a nurse on the 24/7 call center. She said it is not on the list, but to call Gilead in the a.m. and check with them to see if they had done any research on it.

As for calcium carbonate, she said it was not specified. What was of concern with TUMS, and OTC meds for heartburn was the magnesium and other ingredients. I will verify in the morning when I call Gilead.

drummerman · « **Reply #39 on:** September 14, 2015, 09:51:44 pm »

Quote from: csolisnfl on September 14, 2015, 09:24:31 pm

Spoke with a nurse on the 24/7 call center. She said it is not on the list, but to call Gilead in the a.m. and check with them to see if they had done any research on it.

As for calcium carbonate, she said it was not specified. What was of concern with TUMS, and OTC meds for heartburn was the magnesium and other ingredients. I will verify in the morning when I call Gilead.

yep... I've been reading not to take tums, etc. with harvoni. Gilead will know.

dm

drummerman · « **Reply #40 on:** September 14, 2015, 10:00:40 pm »

Quote from: csolisnfl on September 14, 2015, 09:24:31 pm

Spoke with a nurse on the 24/7 call center. She said it is not on the list, but to call Gilead in the a.m. and check with them to see if they had done any research on it.

As for calcium carbonate, she said it was not specified. What was of concern with TUMS, and OTC meds for heartburn was the magnesium and other ingredients. I will verify in the morning when I call Gilead.

this has some good info:
http://hcvadvocate.org/library/herb_glossary.asp

"Attention for Liver Disease: Increased risk of liver toxicity when used with other potentially hepatotoxic substances/drugs. Because it appears to interact with cytochrome p-450 metabolized substances (see About Cytochrome P-450 below), do not take echinicea during HCV treatment."

dm

csolisnfl · « **Reply #41 on:** September 15, 2015, 07:15:04 pm »

Okay, I did contact Gilead today, but according to their pharmacists, they had not done any research on Echinacea or Goldenseal, so they could not say definitively whether or not there would be any interactions with the Harvoni. Just have to get sulpha drugs I guess.

byebyeC · « **Reply #42 on:** September 15, 2015, 09:02:35 pm »

Just started on the 7th meself

Welcome and great luck!

csolisnfl · « **Reply #43 on:** September 15, 2015, 09:10:42 pm »

Welcome to the zoo, byebyeC. I have my 4th week checkup and bloodwork on the 29th and then have to wait until the VA calls, or I call them to find out what has happened with me.

I have had more energy than I know what to do with this week. Working on greenhouse, hydroponics system, trimming trees, you name it. Must be something good happening.

Has anyone noticed a change in their skin since being on Harvoni? I can say mine is definitely getting softer like it was years ago, and the one patch of psoriasis on my left elbow is all but gone. I used to call it my weather vane as it would flare up when my immune system was in high gear.

drummerman · « **Reply #44 on:** September 15, 2015, 09:30:42 pm »

Quote from: csolisnfl on September 15, 2015, 07:15:04 pm

Okay, I did contact Gilead today, but according to their pharmacists, they had not done any research on Echinacea or Goldenseal, so they could not say definitively whether or not there would be any interactions with the Harvoni. Just have to get sulpha drugs I guess.

and thats the problem... these companies cannot possible test all of the interactions with the 100s of herbal sups out there. Just play it safe and stay away from them. Its just too risky.

http://hcvadvocate.org/library/herb_glossary.asp
BTW - check out the author of this link. Lucinda Porter. She is on this site. You can read alot about her on the internet. She knows her stuff.

dm

csolisnfl · « **Reply #45 on:** September 26, 2015, 07:00:25 pm »

Had my first meeting with my team at the VA Clinic yesterday. AST was down to 20 and ALT was at 11. Those are the lowest numbers I have had in 11 years since the VA started tracking my status. I was also switched to a 12 week treatment plan as the criterion changed 2 weeks after starting on Harvoni. Still have a few weeks to go to get test results back on Viral load.

Yayyyyyyyy!

KimInTheForest · « **Reply #46 on:** September 26, 2015, 07:04:46 pm »

Quote from: csolisnfl on September 26, 2015, 07:00:25 pm

Had my first meeting with my team at the VA Clinic yesterday. AST was down to 20 and ALT was at 11. Those are the lowest numbers I have had in 11 years since the VA started tracking my status. I was also switched to a 12 week treatment plan as the criterion changed 2 weeks after starting on Harvoni. Still have a few weeks to go to get test results back on Viral load.

Yayyyyyyyy!

Excellent news!!!

kim

Cal · « **Reply #47 on:** September 26, 2015, 07:05:34 pm »

Hooray, what brilliant numbers. You must be stoked. Also switched to 12 weeks. Well done. You're on your way. Cal

csolisnfl · « **Reply #48 on:** September 26, 2015, 07:22:14 pm »

Yes Cal I am totally stoked. Noticed a gradual decrease in constant ache in upper right quadrant as well. But the telling tail will be viral load. Jada (my current team leader) stated they did not go by viral load as a determining factor for treatment, or length of treatment, but an undetected viral would be outstanding. Blood sent off to St Louis yesterday. Woot!

Philadelphia · « **Reply #49 on:** September 26, 2015, 07:26:53 pm »

Great numbers, congrats! And also on the 12 weeks.

I didn't go UND until somewhere btw 4 and 8 weeks so don't panic if you're not quite there. It's working, and you can tell it's working.

drummerman · « **Reply #50 on:** September 26, 2015, 08:35:24 pm »

Quote from: csolisnfl on September 26, 2015, 07:00:25 pm

Had my first meeting with my team at the VA Clinic yesterday. AST was down to 20 and ALT was at 11. Those are the lowest numbers I have had in 11 years since the VA started tracking my status. I was also switched to a 12 week treatment plan as the criterion changed 2 weeks after starting on Harvoni. Still have a few weeks to go to get test results back on Viral load.

Yayyyyyyyy!

good news!!!

So you originally were going 8 weeks and they changed your plan to 12 weeks??

Is 8 weeks totally gone now? harvoni-wise?

dm

csolisnfl · « **Reply #51 on:** September 26, 2015, 08:58:10 pm »

Not sure, but the VA has decided to treat the virus more aggressively than originally. Doesn't hurt my feelings one bit!

drummerman · « **Reply #52 on:** September 26, 2015, 09:16:15 pm »

Quote from: csolisnfl on September 26, 2015, 08:58:10 pm

Not sure, but the VA has decided to treat the virus more aggressively than originally. Doesn't hurt my feelings one bit!

Interesting.
dm

csolisnfl · « **Reply #53 on:** September 26, 2015, 09:18:10 pm »

8/11/15 Week 5 <15 vl, AST 18, ALT 18
9/11/15 Week 9 "HCV NOT DETECTED"!
AST 16, ALT 11

Nice looking numbers drummer!!

drummerman · « **Reply #54 on:** September 26, 2015, 09:21:09 pm »

Quote from: csolisnfl on September 26, 2015, 09:18:10 pm

8/11/15 Week 5 <15 vl, AST 18, ALT 18
9/11/15 Week 9 "HCV NOT DETECTED"!
AST 16, ALT 11

Nice looking numbers drummer!!

thanks!
hoping it sticks!
dm

Bree · « **Reply #55 on:** September 26, 2015, 10:18:32 pm »

Great news! My doc doesn't even order 8 week regimens anymore... doesn't mean he will get his way with insurance companies... his theory is that if it's a 1-2% difference in cure rates, better to have those better odds. Anyway, your other numbers look great so betting VL will follow that trend.

csolisnfl · « **Reply #56 on:** October 06, 2015, 08:00:39 pm »

Good News! Last viral load? After 4 weeks of Harvoni <15 I will update my signature block.

Scoutdoy · « **Reply #57 on:** October 06, 2015, 08:06:24 pm »

Wow Cso...numbers look great! Now here is the question,,, at this point that you are at,,,,I could feel the virus gone! I know it's hard to believe but I could. Some weird sense in me said " wow" I think this is how I am supposed to feel at my age. It was like there wasn't some internal war going on in my body. How do you feel?

Scout

Else · « **Reply #58 on:** October 06, 2015, 08:20:46 pm »

Congratulations, CSO!!! On both your virtually undetectable viral load and the 12 weeks of treatment. Fantastic news. It's a new world, isn't it?

Bree · « **Reply #59 on:** October 06, 2015, 08:34:17 pm »

Yep CSO, good stuff all the way around!!!

And Scout, me too... I felt like something lifted... my body was lighter somehow. I felt the same way.

csolisnfl · « **Reply #60 on:** October 06, 2015, 08:40:37 pm »

Thanks everyone, so much encouragement here.

Scout, as for your question, my viral load was done at only 3.5 weeks after starting treatment, and I was just finishing a bout with my immune system. What I mean is I had been feeling tired and had the swollen knuckles which is one of my indicators that my immune system was on the war path. That started about 3 weeks into treatment, so I knew something was up. I had another short bout of that after starting the second batch of the Harvoni, and then nothing. It has been clear sailing since. Less internal struggling and battling going on now so I am more encouraged that I am in the clear. I am sleeping more soundly and am able to get in more walking and exercise around the yard and garden. I hadn't made the connection that something has 'lifted', but I am feeling better and hungry to boot!

Cal · « **Reply #61 on:** October 07, 2015, 02:13:52 am »

CSO
Great news and numbers. I feel clearer in the head. Still having too many sxs from riba to tell how I really am. But I think a clear mind or clearer is a good gauge for me.Cal

csolisnfl · « **Reply #62 on:** October 07, 2015, 07:14:04 am »

Wow Cal, your viral load dropped like a rock!! That is great news. My viral load was just over a million when I started, no wonder I have been so tired. I am also waiting for my brain function to return. I just can't seem to get that engine started lately.

Cal · « **Reply #63 on:** October 07, 2015, 11:34:29 pm »

HI CSO,
Yes it did and so did yours! Your brain will start to clear and you or someone else will notice it and then all of a sudden you're explain the political ideology of Feminism to your two sons, who can't believe you even know big words other than ****! It's exciting, it makes up for not having use of my body yet!!!!! It will happen and you'll realise how close to encephalic damage you were. BTW I don't know if I'll get all function in the brain back, but I'm happy I have this much at least. Cal

Scoutdoy · « **Reply #64 on:** October 07, 2015, 11:37:20 pm »

Cal, hopefully you will bounce back more than you think. It may just take a little longer after you have stopped the treatment. Stay positive. Your almost there. How many days do you have left?

Scout

Cal · « **Reply #65 on:** October 08, 2015, 12:11:48 am »

Hi Scout,
Funny you should ask, 35! 5 weeks. Just finished 7 weeks today. Yes anything can and will happen. I'm ready for whatever! I'm just happy :DCal

Bree · « **Reply #66 on:** October 08, 2015, 12:23:29 am »

Quote from: Cal on October 08, 2015, 12:11:48 am

Hi Scout,
Funny you should ask, 35! 5 weeks. Just finished 7 weeks today. Yes anything can and will happen. I'm ready for whatever! I'm just happy :DCal

Yea Cal!!!

Scoutdoy · « **Reply #67 on:** October 08, 2015, 12:25:58 am »

Glad to hear your happy. I think positive thinking really does help the healing process. These last 5 weeks will go by fast for you. Do you have to take the riba the entire 12 weeks? My friend who was on Harvoni plus riba was taken off riba after 6 weeks. He had a liver transplant and docs said they wanted an extra boost for the first 6 weeks. Never heard of that before but he just achieved 12 weeks EOT undetected. Glad he is feeling good, he is my lawyer and I am going through a divorce right now,,,LOL

Scout

Cal · « **Reply #68 on:** October 08, 2015, 02:06:43 am »

Scout,

I don't know if ill be on ribas for the whole tx, but probably. Never mind! It's doing it's job. What great news about your friend. Having to endure a transplant then tx wow. What a man. Cal

drummerman · « **Reply #69 on:** October 08, 2015, 07:19:05 am »

Quote from: csolisnfl on September 26, 2015, 08:58:10 pm

Not sure, but the VA has decided to treat the virus more aggressively than originally. Doesn't hurt my feelings one bit!

Just talked to my sister in law, a senior pharmacist at our VA and she said that they were being more aggressive and moved from 8 wks to 12 wks for tx naive, no cirrhosis patients. Interesting.

dm

byebyeC · « **Reply #70 on:** October 08, 2015, 06:02:46 pm »

Absolutely fabulous news Drummerman!!!

KimInTheForest · « **Reply #71 on:** October 08, 2015, 06:37:41 pm »

Quote from: drummerman on October 08, 2015, 07:19:05 am

Just talked to my sister in law, a senior pharmacist at our VA and she said that they were being more aggressive and moved from 8 wks to 12 wks for tx naive, no cirrhosis patients. Interesting.
dm

That is VERY good news for a lot of future patients to be treated by VA! VA must have realized it was costing them more to go with 8 weeks for some folks, since they then need to re-treat some of those patients when they don't get cured with 8 weeks.

kim

okiemagic · « **Reply #72 on:** October 08, 2015, 06:58:00 pm »

Just started Harvoni today..I'm treatment naive with F2 and good liver test results diagnosed 12 years ago but likely contracted it in the Army 25 years ago..I didn't even think I qualified for Havoni but guess I was wrong..The VA put me on 12 week regime..I was hoping for an 8 week deal though...Hope things go well for all of you and myself as well..To success and few side-effects...!!

Else · « **Reply #73 on:** October 08, 2015, 07:49:57 pm »

Welcome Okiemagic! And major congratulations for getting VA approval with a F-2 fibrosis score. Sounds like the VA is making some important changes. I'd embrace that 12 weeks if I were you - lotsa folks are fighting for 12wks. It's an easy course of treatment but just the same, you don't want to have to do it twice!

okiemagic · « **Reply #74 on:** October 08, 2015, 09:31:38 pm »

Thanks...I'm ready to tackle this deal....

Cal · « **Reply #75 on:** October 08, 2015, 11:02:34 pm »

Hi Okie,
Welcome to the forum. All is sounding pretty good for you. If you can make your own thread and put in profile signature, then we will know more about you and won't keep asking you the same questions. It's also a good record for you, as tx is a long time and can be a bit hazy at times! Good luck. Hope to talk to you more. Cal

byebyeC · « **Reply #76 on:** October 09, 2015, 08:16:20 pm »

Welcome to the Happy Heppers club okiemagic!

We're open 24-7 365

God bless your journey!

csolisnfl · « **Reply #77 on:** November 09, 2015, 03:17:24 pm »

See Sig Block. At 8 weeks my tests came back: VL came back as Not Detected. ALT was 13 and AST was 18. I am dancing a jig!!

Else · « **Reply #78 on:** November 09, 2015, 03:27:47 pm »

DANCE-OFF!!!

csolisnfl · « **Reply #79 on:** November 09, 2015, 03:57:51 pm »

Ya gotta just love Harvoni. I am 10 weeks into the program and have suffered no ill affects other than the mild headache on day one. Thanks to reading this forum, I knew to increase my water intake and that was that.

We should have a dance parteh!!

Nice stats, Else!!

Cindy1955 · « **Reply #80 on:** November 09, 2015, 04:29:48 pm »

Happy Day!!!! That is fantastic csolisnfl!!!
I too got my results today (4 week), such an awesome feeling!! Think I feel the earth shake with all of the happy dancing going around.

Cindy

csolisnfl · « **Reply #81 on:** November 09, 2015, 04:35:30 pm »

I am so happy for you as well, Cindy1955! Great results!!

Else · « **Reply #82 on:** November 09, 2015, 04:46:13 pm »

I'm going in for my 8wk labs tomorrow. No viral load test, but I'll assume that if my liver function panel remains stable that there's no reason to think my "undetected" status had changed.

I get another viral load test at EOT. One more month!

And yeah, the 12wk post-EOT is the brass ring. But for some reason I'm just sure it's a done deal.

BillT · « **Reply #83 on:** November 09, 2015, 04:48:27 pm »

Hi Csolisnfl,
It looks like you and I have a lot in common.Both got it in the military in 1973 the same way and have pretty much taken the same path to the cure.Be glad you held out on the interferon.I couldn't believe it when the VA agreed to treat me with the new meds.My doctor told me he would rather spend $90K on me now than $1 million later for a transplant.Congratulations on a mild ride and a cure.Cheers

BillT · « **Reply #84 on:** November 09, 2015, 04:50:14 pm »

Congratulations to you Else,
I have faith that your labs will be just fine and you'll SVR.

csolisnfl · « **Reply #85 on:** November 09, 2015, 04:59:53 pm »

Else, my nurse practitioner was so positive I would clear the virus since my 3.5 labs came back at <15. We are tough old birds and don't take 'no' for an answer.

csolisnfl · « **Reply #86 on:** November 09, 2015, 05:02:21 pm »

Quote from: BillT on November 09, 2015, 04:48:27 pm

Hi Csolisnfl,
It looks like you and I have a lot in common.Both got it in the military in 1973 the same way and have pretty much taken the same path to the cure.Be glad you held out on the interferon.I couldn't believe it when the VA agreed to treat me with the new meds.My doctor told me he would rather spend $90K on me now than $1 million later for a transplant.Congratulations on a mild ride and a cure.Cheers

Ha ha ha, that was my argument when they postponed my Harvoni treatment. Pay now or pay later, but later will cost you much more.! Their argument was they could only treat the worst cases at the time due to a limited amount of Harvoni and funding. I thank Congress for turning more funding lose to treat those of us on the list.

csolisnfl · « **Reply #87 on:** November 09, 2015, 05:05:43 pm »

That's me doing a jig!!

Cindy1955 · « **Reply #88 on:** November 09, 2015, 05:12:25 pm »

ME TOO!!!!!

BillT · « **Reply #89 on:** November 09, 2015, 05:13:20 pm »

I paid dearly back in 2004.My doctor told me there was only a 30% cure rate with the Peg.I have the same doctor that oversaw my treatment back then.I couldn't believe he was still with the VA.He told me he was going to cure me.I asked if he was going to kill me while he was doing it and we both just laughed.I was suppose to start this back in July but all the money was tied up in the Choice Card and they couldn't free it up for anything else so they had to wait until the fiscal year began October 1.We're started and on our way so I'm not looking back.GL

csolisnfl · « **Reply #90 on:** November 09, 2015, 05:13:44 pm »

Best laugh I have had all week!!

csolisnfl · « **Reply #91 on:** November 09, 2015, 05:15:32 pm »

Quote from: BillT on November 09, 2015, 05:13:20 pm

I paid dearly back in 2004.My doctor told me there was only a 30% cure rate with the Peg.I have the same doctor that oversaw my treatment back then.I couldn't believe he was still with the VA.He told me he was going to cure me.I asked if he was going to kill me while he was doing it and we both just laughed.I was suppose to start this back in July but all the money was tied up in the Choice Card and they couldn't free it up for anything else so they had to wait until the fiscal year began October 1.We're started and on our way so I'm not looking back.GL

Stay positive, hun. You can do it!! I have had so much energy the last month I have been doing projects I had only hoped to complete before. Even painting the exterior of the house by myself!

BillT · « **Reply #92 on:** November 09, 2015, 05:16:06 pm »

Dance on Cindy.I'm really happy for you.I get my 4 week labs done Thursdays and will find out on Friday what they were.I'm sure it's undetectable so I'm not worried in the least.Good for you.

BillT · « **Reply #93 on:** November 09, 2015, 05:24:29 pm »

BTW You 2 are leading the conga line tonight.

csolisnfl · « **Reply #94 on:** November 09, 2015, 05:32:54 pm »

Well join in, you'll hit Not Detected VL faster than I did!!

BillT · « **Reply #95 on:** November 09, 2015, 05:41:13 pm »

I'm right there with everyone Csolisnfl.I am however going to save my best moves for Friday night when I get my news.

Scoutdoy · « **Reply #96 on:** November 09, 2015, 07:26:19 pm »

Good luck and congrats to all of you! I finished Harvoni on Oct 18 and haven't looked back! I am lucky...no real side effects during treatment and none now. I just hope the 12 week EOT is still undetected

csolisnfl · « **Reply #97 on:** November 09, 2015, 07:56:23 pm »

YAY Scout!! From what I understand the Harvoni knocks the virus down low enough that your body can rid itself of the bugger just like you could have when you were infected. Many more people were infected than became chronic like us. Most clear the virus within a six week period. The rest of us needed assistance with it, but it didn't become available until recently with the latest drug regimens.

Harvoni has a lower relapse record from what I gather than any other drug tried. Keep your head up and keep moving forward.

BillT · « **Reply #98 on:** November 10, 2015, 07:22:22 am »

I glad you got through it with great results Scout.I'm sure your EOT12 will be exactly what you hope for.One question that has been nagging at me as I read the posts on Harvoni though.Some on Harvoni seem to show bits and pieces of HCV leftover at EOT and go on to SVR12 undetected.Those of us on Viekira never seem to have that happen to us and I can't understand why.I know these drugs effect us all differently but it's usually cut and dried for us Viekirians.It's just something I've noticed and wondered about.

Scoutdoy · « **Reply #99 on:** November 10, 2015, 01:22:56 pm »

That's a good question. I think it might be a numbers equation. I mean, the number of people on Harvoni vs Viekira .. The number of people reporting it. Who knows. The human body is a weird unit. How it reacts in each individual is unique. How one person feels virtually no side effects and another has many. Some people can barely function, while others are on cloud nine. I just feel blessed about being on the good end of that train.

Scout

RedFoxJean · « **Reply #100 on:** November 10, 2015, 02:01:31 pm »

I just received approval from my insurance company. I am hoping to get started next week with Harvoni. I was paralyzed with fear until I began reading some of the posts. For the most part I am very positive and a strong person. I truly feel all will go well and I will be cured with minimal side affects. I don't know my stats yet except that I am F1-F2. Will find all that out later.

csolisnfl · « **Reply #101 on:** November 10, 2015, 02:08:13 pm »

Congrats RedFoxJean on getting approved. I hope you will find side effects minimal and the outcome positive. Just wait, all the energy you will have will astound you!

Scoutdoy · « **Reply #102 on:** November 10, 2015, 03:13:56 pm »

Redfox, I hope you get the energy boost that I did. The first couple of days I had a slight headache but after that I felt great the rest of the treatment. Drink lots of water, I took my pill at noon everyday on an empty stomach. Everyone does it their own times. I started out taking it in the morning with food, but I didn't like how I felt. Once I switched I did great the rest of the treatment.

Scout

RedFoxJean · « **Reply #103 on:** November 10, 2015, 04:34:03 pm »

Scout, thanks for the information. Yes I will have to see what works best for me. Congratulations on being free of this dreadful thing.

Redfox

dobreaux · « **Reply #104 on:** November 10, 2015, 08:25:11 pm »

It's only taken 9 months and multiple insurance rejection letters, but that is an entirely different topic on how uncaring that they are. I must say that I really had hoped for Harvoni and the one pill a day. I am thankful for the chance that I have been given. Today I received my Viekira and getting ready to start the journey.

RedFoxJean · « **Reply #105 on:** November 13, 2015, 01:22:42 pm »

I just received my Harvoni. I am stressing over when to begin taking this. I have an appointment at 4pm drive for an hour and then come back home. Wondering if I take this a 3 pm today like I had planned if it will affect me before I get back home at about 7pm.

I am thinking I should wait until I get back and take it at bedtime. Good thing tomorrow is Saturday and I don't have to work.

Really, really stressing over this.

The more I talk about Hep C with acquaintances the more I am finding out so many folks have this disease. My sister-in-laws brother began treatment about 2 weeks ago. My brother has it but his doctors want to wait before giving him treatment. They both contracted in the armed services.

How wild is this?

Scoutdoy · « **Reply #106 on:** November 13, 2015, 01:37:34 pm »

Redfox...you will be fine...just decide what time of day you wish to take it and try to stay on that schedule. You can ultimately change your schedule if you find a better time I started out in the morning with food in it did not work well with me so I took it at noon on an empty stomach and that's what I did the rest of my treatment. I found if I took it past noon it kept me up at night everyone is different just pick a time

Scout

csolisnfl · « **Reply #107 on:** November 13, 2015, 02:28:56 pm »

Quote from: dobreaux on November 10, 2015, 08:25:11 pm

It's only taken 9 months and multiple insurance rejection letters, but that is an entirely different topic on how uncaring that they are. I must say that I really had hoped for Harvoni and the one pill a day. I am thankful for the chance that I have been given. Today I received my Viekira and getting ready to start the journey.

Congrats dobreaux!! I wish you smooth sailing and a bright outcome!

csolisnfl · « **Reply #108 on:** November 13, 2015, 02:31:43 pm »

Quote from: RedFoxJean on November 13, 2015, 01:22:42 pm

I just received my Harvoni. I am stressing over when to begin taking this. I have an appointment at 4pm drive for an hour and then come back home. Wondering if I take this a 3 pm today like I had planned if it will affect me before I get back home at about 7pm.

First of all stop stressing or even thinking about it. You will more than likely have negligible side effects like the rest of us. I take mine in the morning along with my Thyroxin, and a cuppa joe. I eat when I get ready. Some mornings I wake up at 4 am. other mornings at 6 am. The idea is, I take it when I wake up and that is that.

RedFoxJean · « **Reply #109 on:** November 13, 2015, 02:41:28 pm »

No more stressing. I made up my mind. I will be taking mine at 8 am every morning starting tomorrow since it is Saturday.

Will keep you posted!!

Thanks for all the feedback.

csolisnfl · « **Reply #110 on:** November 13, 2015, 02:45:03 pm »

WTG RedFox!! Stressing adds nothing to the situation, and may complicate it even more. Decide to have a good treatment and good outcome. Better having a positive attitude than anything else.

Madelief · « **Reply #111 on:** November 14, 2015, 04:11:13 am »

RedFox,
Glad for you that you can start the treatment!
I also just started (02-11-2015) and have the same stress thoughts as you though I know why I am doing this. Good that you post here, there are so many nice people and my feeling is we are doing it together and that makes it so much more better.
Most people have littel site effects so I hope that will be for you also!
Wish you all the best and a good journey!
Madelief

Scoutdoy · « **Reply #112 on:** November 14, 2015, 11:08:52 am »

Madelief and Redfox, it's good that you two started about the same time so that you can talk together. There is a group of us that talked through my whole treatment...Cal, Philedelphia, Tommy etc....it really is a stress relief just to talk to others that have lived with this nasty illness...others in your life just cannot understand what your going through, but the people on this forum can. Good luck to both of you and welcome to the cure train

Scout

Madelief · « **Reply #113 on:** November 14, 2015, 01:12:44 pm »

Thank you Scoutdoy!
This forum is almost the only place I can feel good these days...Feel understood and togetherness... My whole life is the medication these days, everything has gone to the background. I am not quite myself, I hope it soon will return being myself, I feel so vulnarable and start easily to cry or yell

The news today from Paris makes me so sad and it scares me more than normal.
Redfox how are you doing?
Thanks all,
Madelief

BillT · « **Reply #114 on:** November 14, 2015, 01:52:11 pm »

Hi Madelief,
The 2 thing that keep me going are knowing that what we are doing to ourselves right now is not normal but we don't really have a choice if we are going to get better.The other thing is that this isn't going to last forever.I agree with you that everyone here makes it more bearable because we all understand each other.I'm just trying to get to the other side any way I can.You do what you need to for yourself right now and leave everything else until later.

RedFoxJean · « **Reply #115 on:** November 16, 2015, 11:59:13 am »

I started my treatment Saturday morning 8 am. It is going into 3rd day. I feel great. No negative side effects. The first night I slept better than I have in a long time. Check this out. For the past 8 years I have had stomach problems. My stomach would quiver (no pain) so bad it would wake me up at night. I had all kinds of test done but the doctors could find nothing.

Since I started taking Harvoni my stomach has not quivered at all. I am wondering if the stomach problem was as a result of Hep C.

Will keep everyone posted. I am so happy.

gnatcatcher · « **Reply #116 on:** November 16, 2015, 12:16:49 pm »

RedFoxJean, glad things are going so well. HCV can be at the root of other, seemingly unconnected symptoms, thus the term extrahepatic manifestations (EHMs). Whether your stomach problems are an EHM of HCV is something I cannot answer, but it sure would be wonderful if curing the HCV gets rid of the stomach problems permanently.

Best of luck to you,

Gnatty

RedFoxJean · « **Reply #117 on:** November 16, 2015, 12:20:33 pm »

Gnatty,

Congratulations on completing your treatment. I am rooting for you on your next labs.

Redfox

csolisnfl · « **Reply #118 on:** November 16, 2015, 01:39:25 pm »

Yeah RedFox!! So glad you have found the treatment to agree with you. I am maybe assuming you were stressing over what could happen having HepC and the nerves/stress might have caused the jittery stomach. Recently I have been able to sleep through the night without having bladder problems. The body tries to rid itself of 'heat' caused by inflamation via the joints/urinary tract. According to TCM (Traditional Chinese Medicine) arthritis is connected to the liver as well. That is why when I was first diagnosed with Rheumatoid Arthritis, then continually checked for joint inflamation and deformation, the deformation of the joints never appeared. That was the clue one Nurse Practitioner needed to test me for HepC.

Keep us informed as to your progress and any other 'symptoms' that seem to dissipate/disappear over the course of your treatment.

Scoutdoy · « **Reply #119 on:** November 16, 2015, 02:05:55 pm »

Hey csolisnfl...I had exactly the same as you with the joints. They were sure I had RA until the hep c doctor said "whoa" bet that it's a false positive because of the hep c...he was right ...I am now negative for RA and negative for hep c

Scout

csolisnfl · « **Reply #120 on:** November 16, 2015, 02:10:25 pm »

Quote from: Scoutdoy on November 16, 2015, 02:05:55 pm

Hey csolisnfl...I had exactly the same as you with the joints. They were sure I had RA until the hep c doctor said "whoa" bet that it's a false positive because of the hep c...he was right ...I am now negative for RA and negative for hep c

Scout

I was diagnosed with RA back in 1980 and began a series of 'gold shots'. Danged those hurt, but it was the treatment du jour. Funny how quickly the RA symptoms disappeared when I relaxed on the beach while visiting in-laws down in FL. I had other bouts of RA symptoms on and off, so I just took Naproxin and they would disappear. I will be glad to get this done (last week starts tomorrow) then EOT bloodwork and 6 month follow up. I will be one of the healthiest vets they have at Pensacola VA clinic, since my only complaint was the HepC.

Madelief · « **Reply #121 on:** November 16, 2015, 03:41:23 pm »

Hallo RedfoxJean,
Good to read that you are feeling fine!

I feel also better , feel very crystal clear during the day , also in the night, that's not so good for my sleep, but I am so glad that during daytime I have so much more energy!
I don't know about your stomach, but I can imagine that it had something to do with the HCV.
Good luck, like to hear how things are going.
Madelief

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