Author Topic: Started treatment 4/4/2015 (Read 29374 times)

HepVet · « **on:** April 04, 2015, 02:08:46 pm »

Hello all Hep C Dragon Slayers!

I just took my first dose of Harvoni and Ribavirin. I've read others posts about side effects, it's wonderful to have others share their experiences, thank you very much for being here.

I have more concerns about the Ribavirin than the Harvoni at this point and will try to share my experience here daily.

I am very fortunate that I get my healthcare through the Veterans Administration. The prescription was approved without any hassles, and I have next to no co-pay. I was a bit surprised that it was approved without any hassles considering how expensive the medication is.

Below is my medication/dosing plan, please feel free to share any advice you may have.

I currently take heart and blood pressure medications, so will take them by 8:00 am
Take the Harvoni and first dose of 3 Ribavirin at 10:00 am
Take second set of heart medications at 4:00 pm
Take second dose of 3 Ribavirin at 10:00 pm

I've read the many posts suggesting drinking lots of water. I currently drive for Uber, so can't really drink much during work hours as bathrooms can be difficult to locate, and it's bad form to take bathroom breaks while driving for a client. I intend to drink 100 ounces of water from 4 pm to 10 pm. Probably not the best plan for a good nights sleep, but I think it will have to do.

Once again, any advice or suggestions would be greatly appreciated!

Infected(?) 1976 U.S. Navy Boot Camp - Immunizations via bloody air gun or 1977 Hong Kong Tattoo
Quit drinking 1987
Diagnosed 1988 via blood donation screening
1989 interferon A not tolerated
2001 pegalated interferon and ribavirin not tolerated
2/2013 viral load 2,500,000
3/2015 viral load 500,000

kate0b1 · « **Reply #1 on:** April 05, 2015, 07:35:43 am »

welcome hep vet and best of luck on treatment, there is so much great info here, i did not take riba with this treatment (ptst from last time lol), but there are many here that are on it, so you can get all the help you need to get through it. how many weeks are you going to be on treatment?

kate

HepVet · « **Reply #2 on:** April 05, 2015, 10:59:01 am »

Hi Kate,

Thank you for the reply. I'm on the 12 week plan with blood tests every 2 weeks.

How are you doing?

jberlin · « **Reply #3 on:** April 05, 2015, 11:04:01 am »

HepVet,

Congrats on starting down the road to a cure! My informed guess, and hope, is that you will breeze through this just fine. Fluids, rest and a bit of ibuprofen. Take all your meds as prescribed, and do post any side-effects, or lack thereof, that you have. And for sure post your bi-weekly labs!

We are all pulling for you, and know you will do awesome!

Happy Easter, and best wishes!
-jack
(edited because new post came in answering my questions)

HepVet · « **Reply #4 on:** April 05, 2015, 11:12:02 am »

Day 2 of treatment

No major side effects last night. Only a minor headache, no Tylenol needed.

I feel so very fortunate to be able to try this treatment. From my understanding, this drug is groundbreaking. It is the first drug to actually defeat a virus, not just weaken a virus. It may be bigger than the polio vaccine since it may open the door to similar drugs that can defeat HIV, Ebola, the Flu, etc. Wow!

HepVet · « **Reply #5 on:** April 05, 2015, 11:15:30 am »

Hi jberlin,

Thank you for the kind words. I will try to post details as others have. I found it helpful to read what others have experienced, so will try to do the same : )

Pete · « **Reply #6 on:** April 05, 2015, 10:00:52 pm »

Harvoni and Ribavirin combo therapy? I was not aware of this protocol.

Can you explain the advantages of that treatment vs Harvoni (ledipasvir, sofobuvir) without the Ribavirin?

pete

jberlin · « **Reply #7 on:** April 05, 2015, 10:49:03 pm »

My guess, and that is all it is, would be because of the previous treatment failures, and perhaps liver condition. Harvoni is already a cocktail, but is seems that Ribivirin is being added to the treatment of previous treatment non-responders. Maybe as an added insurance. I saw one study that was showing a 90% success rate for previous non-responders. For a real answer, we need an MD. -jack

Lynn K · « **Reply #8 on:** April 05, 2015, 11:02:48 pm »

Hi Pete

I am also treating with Harvoni and Ribavirin. I was only on 24 weeks of Harvoni initially but after a discussion with my doctor about adding Riba she agreed it would be a good idea to add it. Buy the time I got things worked out with my insurance I was on week 9 of Harvoni. When I finish treatment on May 4th I will have taken Harvoni for 24 weeks and 1000 mg of Riba for 15 weeks.

You can see my recap below but I am a 3 time null responder to interferon based tx plus relapsed on Sovaldi Olysio 12 weeks treatment when I was tested at 12 weeks post treatment. I also was diagnosed with cirrhosis in Jan 2008 with portal hypertension.

So you can probably see why my doctor decided adding the riba was a good idea.

HepVet · « **Reply #9 on:** April 06, 2015, 11:45:14 am »

Day 3

Only minor headache a couple hours after taking the medication. One Tylenol was enough to get rid of it.

HepVet · « **Reply #10 on:** April 06, 2015, 11:53:14 am »

Hi Pete,

It was explained to me that Ribavirin is optional but helps to weaken the virus. Since I was a non-responder in the past, my Dr wants to be as aggressive as possible. She hopes that I am non-detectable in a couple of weeks and we will keep going after the virus until it has no chance of hanging on or hiding.

I'd prefer to take as few drugs as possible, but REALLY want to slay the hep c dragon.

HepVet · « **Reply #11 on:** April 06, 2015, 11:57:37 am »

Hi Lynn,

Hope you're doing well! Have you had any issues with the Riba? I understand the two main side effects are sensitivity to the sun/heat and skin rashes.

Lynn K · « **Reply #12 on:** April 06, 2015, 01:45:22 pm »

Hi

I have only heard of sun sensitivity with Olysio didn't see that wih riba. Had a mild rash for a couple of days weeks on riba but it went away. What I am experiencing is pronounced anemia min normal for female is 11.1 HGB after 3 weeks I was 9.3 so we reduced from 1200 mg to 1000 mg and have been holding steady at the min my doctor wants to see of 10.0. About 25% of patients become anemic and I experienced anenia last time I treated with interferon riba before. Four weeks to go today!

Good luck on treatment

HepVet · « **Reply #13 on:** April 06, 2015, 02:03:02 pm »

Hi Lynn,

Thanks for the info, sounds encouraging.

Four weeks? The finish line is in sight!! Wishing you the best.

Scott

Pete · « **Reply #14 on:** April 07, 2015, 11:43:37 pm »

Thanks for the replies regarding the Harvoni / Riba therapy. Those of you who have endured previous tx and to come up empty must have been just devastating. This is my first time to the rodeo so to speak. I pray everyone here has a positive outcome this time.

Hang in there,

Pete

HepVet · « **Reply #15 on:** April 08, 2015, 11:38:55 am »

Day 5

The only side effects have been minor headaches, so far, so good!

Not sure, but think I'm feeling a little more energy, but maybe not.

The VA pharmacist called me and now wants me to take the Harvoni and 1st dose of Riba first thing in the morning, on an empty stomach. He says that this will give me the best absorption. Don't like taking pills on an empty stomach, but as long as there aren't any problems, I'll give it a try.

Ledoc01 · « **Reply #16 on:** April 08, 2015, 06:33:52 pm »

Hey vet, you might try what I do.. I wake up mid sleep and take my pills then go back to bed for ~ 4 hours. That gives it time to assimilate and you can sleep through the little explosion in your gut.

Lynn K · « **Reply #17 on:** April 08, 2015, 11:36:23 pm »

Gee the prescribing information sheet for Ribasphere says to take Ribavirin with food

http://kadmon.com/files/ribasphere-tablets-pi.pdf

page 16
Effect of Food on Absorption of Ribavirin
Bioavailability of a single oral dose of ribavirin was increased by co-administration with a high-fat meal. The absorption was slowed (Tmax was doubled) and the AUC0-192h and Cmax increased by 42% and 66%, respectively, when ribavirin was taken with a high-fat meal compared with fasting conditions [see Dosage and Administration (2.1) and Patient Counseling Information (17)].

and page 26
How should I take Ribasphere (ribavirin, USP)?
• Take Ribasphere (ribavirin, USP) exactly as your healthcare provider tells you. Your healthcare provider will tell you how much Ribasphere (ribavirin, USP) to take and when to take it.
• Take Ribasphere (ribavirin, USP) with food.
• If you miss a dose of Ribasphere (ribavirin, USP), take the missed dose as soon as possible during the same day. Do not double the next dose. If you have questions about what to do, call your healthcare provider.
• If you take too much Ribasphere (ribavirin, USP), call your healthcare provider or local Poison Control Center right away, or go to the nearest hospital emergency room right away.
• Your healthcare provider should do blood tests before you start treatment with Ribasphere (ribavirin, USP), at weeks 2 and 4 of treatment, and then as needed to see how well you are tolerating treatment and to check for side effects. Your healthcare provider may change your dose of Ribasphere (ribavirin, USP) based on blood test results or side effects you may have.
• If you have heart problems, your healthcare provider should check your heart by doing an electrocardiogram before you start treatment with Ribasphere (ribavirin, USP), and if needed during treatment.

HepVet · « **Reply #18 on:** April 09, 2015, 07:34:31 pm »

Hi Ledoc,

Sounds like a great idea, I'll try it if I have any problems, thanks!

HepVet · « **Reply #19 on:** April 09, 2015, 07:39:00 pm »

Hi Lynn,

I saw that too and brought it up. The coordinator and 2 pharmacists insist that I follow their program, sigh. I'll take it as they wish since the Riba is practically a supplement to the Harvoni. And since the VA is paying for the drugs, I go along with their wishes, for the most part

Scott

HepVet · « **Reply #20 on:** April 09, 2015, 07:39:53 pm »

Day 6

Still very minor headaches, no other side effects.

Lynn K · « **Reply #21 on:** April 09, 2015, 08:43:54 pm »

Sure Hep vet always go with the doctors recommendation just wanted to point it out.

HepVet · « **Reply #22 on:** April 12, 2015, 11:21:57 am »

Day 7, 8, 9

Still no major side effects. Minor headaches, which are subsiding. Still no problems taking the medication on an empty stomach.

Question mostly for the guys: Has anyone noticed any positive effects regarding shrinking their prostrate? I've noticed that when I urinate, the stream is double what it was before starting the medication, that's substantial. Just an odd observation

BubbaT · « **Reply #23 on:** April 12, 2015, 07:53:06 pm »

Hepvet,

Yes, I noticed that also, kind of a bonus! Lol
I was in boot the same as you in 76 in Orlando, you should of said hello! Lol

On week 6, hanging tuff!

41HAPPY61 · « **Reply #24 on:** April 12, 2015, 08:16:30 pm »

Quote from: HepVet on April 05, 2015, 11:12:02 am

Day 2 of treatment

No major side effects last night. Only a minor headache, no Tylenol needed.

I feel so very fortunate to be able to try this treatment. From my understanding, this drug is groundbreaking. It is the first drug to actually defeat a virus, not just weaken a virus. It may be bigger than the polio vaccine since it may open the door to similar drugs that can defeat HIV, Ebola, the Flu, etc. Wow!

41HAPPY61 · « **Reply #25 on:** April 12, 2015, 08:22:25 pm »

Hep Vet - I also just started in April 2015. April 11.....I am on Harvoni for 8 weeks. I have had Hep C for 41 years.

Goodluck!!

HepVet · « **Reply #26 on:** April 12, 2015, 11:30:42 pm »

Hey Bubba T,

I would have had to yell pretty loud, I was in San Diego while you were in Orlando : )

I'll have to ask my Doc if she's heard of the prostrate bonus (if that's what it actually is).

Week 6!!! Keep on hangin' on! Notice any other positive changes?

HepVet · « **Reply #27 on:** April 12, 2015, 11:32:28 pm »

Hi 41HAPPY61

Glad to hear that you're taking the cure, good luck to you too!!

badbradley · « **Reply #28 on:** April 13, 2015, 12:14:18 am »

Quote from: HepVet on April 12, 2015, 11:21:57 am

Question mostly for the guys: Has anyone noticed any positive effects regarding shrinking their prostrate? I've noticed that when I urinate, the stream is double what it was before starting the medication, that's substantial. Just an odd observation

Had some occasional prostate issues. I noticed also that it was much improved on treatment. I relapsed on S/O 12 wks but 5mths post treatment and prostate issue still nonexistent. It is a huge benefit to being treated. I hope it stays this way until I retreat.
Waiting on approval for Harvoni/Ribavirin 12 wks. Let the good times roll.
Brad

debham · « **Reply #29 on:** April 13, 2015, 08:49:10 am »

Day 13 here some headaches but I do have some strange off the wall dreams now anyone else? Deb

BubbaT · « **Reply #30 on:** April 13, 2015, 05:17:25 pm »

Quote from: HepVet on April 12, 2015, 11:30:42 pm

Hey Bubba T,

I would have had to yell pretty loud, I was in San Diego while you were in Orlando : )

I'll have to ask my Doc if she's heard of the prostrate bonus (if that's what it actually is).

Week 6!!! Keep on hangin' on! Notice any other positive changes?

Hey hepvet,

Yeah I guess you wudda needed a bullhorn for that! Lol
Glad to have a sailor on board! I'm almost ready to get underway! Yay!
I was on the CVA-42 Roosevelt, Mayport Fla
What was you fibrosis score going into tx?
I think a. Lot of your experience relative to TX is based on your liver condition.

HepVet · « **Reply #31 on:** April 15, 2015, 11:37:00 am »

Quote from: debham on April 13, 2015, 08:49:10 am

Day 13 here some headaches but I do have some strange off the wall dreams now anyone else? Deb

Hi Deb,

I am a lucid dreamer anyways, haven't noticed any changes, but I have read about others having strange dreams. You may want to start a "dreams" thread if no one else has.

Scott

HepVet · « **Reply #32 on:** April 15, 2015, 11:48:48 am »

Quote from: BubbaT on April 13, 2015, 05:17:25 pm

Hey hepvet,

Yeah I guess you wudda needed a bullhorn for that! Lol
Glad to have a sailor on board! I'm almost ready to get underway! Yay!
I was on the CVA-42 Roosevelt, Mayport Fla
What was you fibrosis score going into tx?
I think a. Lot of your experience relative to TX is based on your liver condition.

Bubba T,

I was on the Guided Missile Cruiser USS Halsey, CG23 out of San Diego. I think it's been decommissioned and is now razor blades.

I don't know my fibrosis score. Don't you need a biopsy for that? My Doc opted to skip taking a piece of my liver out, and I didn't argue. It's been about 13 years since my last biopsy. It was taken at UC Davis Med Center by a Doc in training. It took him 3 tries to get enough liver for them to test. Kinda soured me on the biopsy thing. As I remember, my liver was "okay" with the Hep C being chronic persistent.

HepVet · « **Reply #33 on:** April 15, 2015, 11:53:42 am »

Days 10, 11, 12

Headaches pretty much gone, hope they stay away. I'm honestly surprised that there are no other side effects, but am keeping my fingers crossed.

BubbaT · « **Reply #34 on:** April 15, 2015, 12:21:46 pm »

Hey hepvet,

My dad was a tin can sailor on DD-716 Pritchett, My brother a qtmstr on the Rosey with me, I was in weapons dept., My nephew is a Lcdr Seabee in Biloxi... Just left SD.

On another note did you have a fibrosure or fibroscan prior to tx?
Oh, and I hate those biopsy deal, back then those DR. Couldn't find a liver in a punch bowl? Lol. I had to have Demerol to Get my breathing back first time, second time they used the CT imager and still bout killed me... No more tuff guy for me...

Before you started tx did you get additional blood work , CT or a fibrosure test to determine your Fibrosis score?

HepVet · « **Reply #35 on:** April 20, 2015, 02:29:07 pm »

Hey Bubba T,

No fibrosis scan that I know of. Lots of blood work, not sure what they found beyond a fairly low virus load.

Quote from: BubbaT on April 15, 2015, 12:21:46 pm

Hey hepvet,

My dad was a tin can sailor on DD-716 Pritchett, My brother a qtmstr on the Rosey with me, I was in weapons dept., My nephew is a Lcdr Seabee in Biloxi... Just left SD.

On another note did you have a fibrosure or fibroscan prior to tx?
Oh, and I hate those biopsy deal, back then those DR. Couldn't find a liver in a punch bowl? Lol. I had to have Demerol to Get my breathing back first time, second time they used the CT imager and still bout killed me... No more tuff guy for me...

Before you started tx did you get additional blood work , CT or a fibrosure test to determine your Fibrosis score?

HepVet · « **Reply #36 on:** April 20, 2015, 02:43:35 pm »

Week 2 plus 3 days

No side effects since headaches went away (fingers turning blue from keeping them tightly crossed). I hope with all hope that others have as easy an experience as I am. The jaded side of me is praying that I'm not part of a control group taking a sugar placebo. Sheesh, that'd be enough to piss of the Pope

Went in on Friday to get my Harvoni refilled at the VA. they only do 2 weeks at a time. I guess it forces us to come in and get our blood work done every 2 weeks, plus we only have $14,000 plus worth of pills to be responsible for at a time.

Got my first blood test drawn and will be waiting on pins and needles for the first results of this dragon slaying journey.

As I've read that others are doing, I replaced my razor and tooth brush at the two week mark

Maybe not needed, but if the virus is on it's way out, seems pretty cheap and easy thing to do to help insure that nothing helps it hang on.

Wishing all Hep C dragons are soon slayed!!!!

HepVet · « **Reply #37 on:** October 15, 2015, 01:35:38 pm »

Sorry for the late posting, just wanted to up date results.

MOST IMPORTANTLY: If you're here trying to decide to treat your Hep C with the Harvoni, I highly recommend doing it. It seems to be very effective with minor or no side effects. What more could you ask for?

I had no problems tolerating the Harvoni/Riba treatment with the exception of minor anemia, mild headaches for the first week only, and "sleeping warm". All side effects are gone and are honestly hardly worth mentioning.

HEPATITIS C VIRUS RNA:

5/1/2015 - Not Detected
6/26/2015 <12 IU/mL
9/25/2105 <12 IU/mL

I haven't talked with the Doc, but from what I've read, the Hep C virus is either cleared or is minimal and my body is keeping it down. I'm not going to worry about it unless the VL climbs above <12 IU/mL. I'll text my Doc, see what she says. I'm guessing it will be a VL test in 3 to 6 months.

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Author Topic: Started treatment 4/4/2015 (Read 29374 times)