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Post Info TOPIC: Started Harvoni Yesterday


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RE: Started Harvoni Yesterday
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Oh yes i know that effect.  What are car keys.peoples names (not good in any circumstance. Forgetting girlfriends name) but as i started treatment and my viral load dropped it got better very fast. I clesred the virus in 2weeks from 34million to undetrcted..i lost. Weight from decades of being. 175Pounds forrver to 143,.i am working it back.. will start. Protein. Shskes necct week as we have a dietician in the circus. Also a trainer. And massage therapist and we have a medical team. I had a couple of bowel blockages. So i feel better and blessed to have all ithis around.

I dont have to fo anything with my hep dr untill my last blood in August. Then hopfully svr.  .i almost withdrew. From the circus but everything is covered. Jic:. This circus will be aprox 4yesrs and i am greatfull. I made it. I couldnt have done this without. The people here and my employer.. all of whom are banged up significantly.we almodt lost a principal. Opening night . And we did lose 2 long time circus member opening day . We made it thougj and we go forward.  ..



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Brian, I do have a lot of energy. I do have a memory problem. Started with the Harvoni. Monday went to get gas,paid the guy drove off and forgot to get the gas. Realized it when I drove about 15 minutes and the gas light came on. Tuesday I was on my way to get my blood work done and wound up 50 miles away at my first job then remembered I was driving to get blood test. Had to turn around and go back. All through out the day I start something and then I'm like what was I just doing? Sometimes I remember sometimes I don't. Feel great though. Just did my 4 week after SOT Waiting on blood test. Peace Back at ya! Ron

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55 YO, 30 Years. GT-1. Cirrosis AST 108 ALT 207 TX HCA RNA 7.03 SOT Harvoni-5/16/2015 EOT 08/07/2015

4 Week Blood Test after SOT AST 20 ALT 32 HCA RNA *Below the limit of Quantitation <15* H



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Tig56 wrote:

Hi Ron,

Often we see the Hgb drop on treatment secondary to anemia, but yours is hanging in just above the upper limits of normal. Not a problem imo. The Hct is the volume percentage of red blood cells, which seems consistent with the small Hgb elevation. As the Hgb drops, fatigue increases because the RBC's aren't able to transport oxygen to the cells as efficiently. More blood cell volume can equal higher Hgb. We often see platelet reductions on treatment. The MPV is also known as the Mean Platelet Volume. It tends to elevate as the platelet count drops. 

You're just getting started and will see these numbers fluctuate, now and throughout treatment, it's expected. This is the reason our docs have us come in at regular intervals to monitor them. Not to worry!


 Hey Ron...

I felt thst way thru the whole treatment and i too with fresh berries green kale etc. Energy ptetty much all the time . Hope the ride to the finish continues to be dmooth

Peace

 

Brian

Ps the only strange. Thing has ben everytime i type my name i think i typed brain.....



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I want to add I have lost ten unneeded pounds and I'm sleeping great. I do my pill at 9:30 every morning.

 

Thanks Again,

 

Ron



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55 YO, 30 Years. GT-1. Cirrosis AST 108 ALT 207 TX HCA RNA 7.03 SOT Harvoni-5/16/2015 EOT 08/07/2015

4 Week Blood Test after SOT AST 20 ALT 32 HCA RNA *Below the limit of Quantitation <15* H



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Greetings All,

I just wanted to give an update with 2 pills left in my first bottle. So 26 days after  SOT. I said in my previous post I started on Harvoni with 3 weeks of Bronchitis. Then my wife and son got bit of a virus, wound up getting that for a few days. I really don't know during that time if I had any side side effects from the Harvoni. I have felt really amazing the last three days and back to work full force. I feel better then when I started the Harvoni. A little fatigue after I get off work. Watching my diet eating lots of dark leafy greens, especially Kale. Been putting it in the Nutri Bullet every morning with blueberries, bananas, pineapple and cashews. Eating lots of homemade Thai food and homemade Miso soup. I've been staying away from any meats. My wife buys me all organic non-gmo. The doc said I could do Fish Oil that I buy in Gel Caps and up to 1000 mg of Ascorbic Acid a day (Pure Vitamin C). All I can says is I feel great and don't seem to have any side effects at all. I know the Harvoni will effect everyone in different ways and I still have eight weeks left. If I feel like I do now until EOT Yee Haw! I really wanted to post this for people that are just starting so you know that it is possible to go through treatment with no side effects. I know I have a ways to go but I thank my higher power for keeping strong and helping kick this things butt! I go in next week for my 4 week blood test which show my VL. Really looking forward to it.

 

Thanks and all have a good night,

Ron



-- Edited by sirronalot on Thursday 11th of June 2015 03:27:44 AM

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55 YO, 30 Years. GT-1. Cirrosis AST 108 ALT 207 TX HCA RNA 7.03 SOT Harvoni-5/16/2015 EOT 08/07/2015

4 Week Blood Test after SOT AST 20 ALT 32 HCA RNA *Below the limit of Quantitation <15* H

Tig


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Hi Ron,

Often we see the Hgb drop on treatment secondary to anemia, but yours is hanging in just above the upper limits of normal. Not a problem imo. The Hct is the volume percentage of red blood cells, which seems consistent with the small Hgb elevation. As the Hgb drops, fatigue increases because the RBC's aren't able to transport oxygen to the cells as efficiently. More blood cell volume can equal higher Hgb. We often see platelet reductions on treatment. The MPV is also known as the Mean Platelet Volume. It tends to elevate as the platelet count drops. 

You're just getting started and will see these numbers fluctuate, now and throughout treatment, it's expected. This is the reason our docs have us come in at regular intervals to monitor them. Not to worry!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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I was reading in another post about how Cinnamon Girl posted about HGB. I wanted to post results which were always normal until I started the Harvoni. I know the AST and ALT are normal after two weeks. Here are my out of wacks.

  • Hemoglobin Normal 13.2-17.1 - Mine- 17.7H
  • Hematocrit  Normal 38.5-50.0 - Mine- 53.6H
  • Platelet Count Normal 140-400 - Mine- 85L
  • MPV               Normal  7.5-11.5 -Mine- 12.5H         

 

Thanks Ron



-- Edited by sirronalot on Saturday 6th of June 2015 01:11:29 PM

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55 YO, 30 Years. GT-1. Cirrosis AST 108 ALT 207 TX HCA RNA 7.03 SOT Harvoni-5/16/2015 EOT 08/07/2015

4 Week Blood Test after SOT AST 20 ALT 32 HCA RNA *Below the limit of Quantitation <15* H

Tig


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That's outstanding Ron!! The drop in your enzymes is exactly what we want to see. The fact they have dropped to WNL, is a sign that the drugs are doing their thing! Congrats man, keep it going!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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2 Week Blood test results
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Well, I told you all my doctor is having me do blood work every 2 weeks. I got the 2 week test back today. Here are my results after two weeks. My next to week test will show the HCV RNA. Bronchitis is gone feeling fatigued at times but pretty much no side effects. This was pretty exciting 2 weeks unbelievable!!

AST 108 Should be between 10-35 - As of 06-01 - AST 27 -:)

Alt 207 Should be between 9-46 - As of 06-01 - Alt 39 -:)

HCV RNA 10715871 - Know on my 4th week test

 

Thanks for your help and support,

 

Ron

 

 

 



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55 YO, 30 Years. GT-1. Cirrosis AST 108 ALT 207 TX HCA RNA 7.03 SOT Harvoni-5/16/2015 EOT 08/07/2015

4 Week Blood Test after SOT AST 20 ALT 32 HCA RNA *Below the limit of Quantitation <15* H



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Started Harvoni Yesterday
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I`m glad to hear you`re getting some relief from the congestion now, Ron, sounds like  you`re on top of it. 

Using turmeric is an interesting idea, it is supposed to be a strong anti-inflammatory and have beneficial properties.  I`m sure you`ll enjoy your Thai cooking anyway, that`s enough to make anyone feel better!

You`re sounding upbeat anyway, keep up the positive thinking!  smile

 



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Was Gen 3a, 

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SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Thanks Cinnamon Girl. I did call Gilead today and they were very helpful. I got a few of questions answered. Its so new they didn't have all the answers. The things I wanted do had not been tested in the trials. They said talk to my doc. That will have to wait till Tuesday. I did go and get some name brand Mucinex 1200mg with just guaifenesin. Which they said I could do. It is working a lot better clearing me out. My wife got me the store brand 300 mg. with just the guaifenesin and it was not working. I'm working through it. 

She did say I could do the Turmeric. Which is great cause I love making Thai food!

Thanks for everyones help.

Ron

 



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55 YO, 30 Years. GT-1. Cirrosis AST 108 ALT 207 TX HCA RNA 7.03 SOT Harvoni-5/16/2015 EOT 08/07/2015

4 Week Blood Test after SOT AST 20 ALT 32 HCA RNA *Below the limit of Quantitation <15* H



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Hi there Ron,

Sorry you`re feeling so poorly.  Going down with bronchitis just before you started your Harvoni was unfortunate timing!

Harvoni can cause fatigue, headaches, nausea and insomnia amongst other side effects, and having a viral infection going on at the same time must be quite debilitating for you. 

I would ask your doctor what he recommends for you to take and in the meantime try and rest as much as you can and drink plenty of water to keep yourself well hydrated.  You could try ringing the Gilead support line too, I believe they are very helpful. 

Reading your previous post, 12 weeks is the correct protocol if you`re tx naive and that should be all you need to clear the virus, it`s a very powerful drug combo!

Hope you feel better soon, best of luck!  smile

 

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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I'm going a little crazy. I'm on my 8th day of Harvoni and my 11th day of bronchitis . Its so weird I feel terribly tired and have thrown up twice in the last week and have insomnia. I don't know if the symptoms are from the bronchitis or the Harvoni. My mucus isn't green. So its not bacterial, so no antibiotics. My old fall back was Day Quill and Night Quill. Cant do either with Harvoni. Have to find something with just Guaifenesin. Called and it is Ok to do. Any suggestions thoughts or anybody going through or have gone through the same thing on Harvoni.

 

Thanks

Ron



-- Edited by sirronalot on Sunday 24th of May 2015 02:51:11 PM

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55 YO, 30 Years. GT-1. Cirrosis AST 108 ALT 207 TX HCA RNA 7.03 SOT Harvoni-5/16/2015 EOT 08/07/2015

4 Week Blood Test after SOT AST 20 ALT 32 HCA RNA *Below the limit of Quantitation <15* H



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Tig thanks for the link. Since I have had no prior treatment. I'm naivea genotype1 and according to this the correct Gilead protocol it is 12 weeks. I was just in a tissy of research thinking I was going to have to go fight the system again. I'm going to stick with the 12 not bother even talking to the doctor till my six week test and hopefully get some good results. Thanks for the positive and stay focused. Thats what I needed!!


www.gilead.ca/pdf/ca/harvoni_pm_english.pdf

Page 21 table 7. Recommended Dose and Treatment Duration for HARVONI

Fixed Duration

Treatment-naïve genotype 1 patients without cirrhosis 12 weeks -
Treatment-naïve genotype 1 patients with cirrhosis 12 weeks
Treatment-experienced genotype 1 patients without cirrhosis 12 weeks
Treatment-experienced genotype 1 patients with cirrhosis 24 weeks

HARVONI Dose (daily)
90 mg ledipasvir/400 mg sofosbuvir (one tablet)

a. Treatment-naïve is defined as no prior exposure to any interferon, RBV, or other approved or experimental HCV-specific direct-acting antiviral agent at the time of treatment initiation.

b.HARVONI for 8 weeks can be considered in treatment-naïve patients without cirrhosis who have pre- treatment HCV RNA less than 6 million IU/mL

Thanks again for all your help,

Ron



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55 YO, 30 Years. GT-1. Cirrosis AST 108 ALT 207 TX HCA RNA 7.03 SOT Harvoni-5/16/2015 EOT 08/07/2015

4 Week Blood Test after SOT AST 20 ALT 32 HCA RNA *Below the limit of Quantitation <15* H

Tig


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Hi Ron,

Thought you might find this information useful. It's the Harvoni Monograph, the official literature from the drug manufacturer. It may help you understand the medication better. The recommended treatment lengths are described on Pg 21 Table 7. It's important to have an accurate fibrosis stage to determine this. 

It's very important to be your own advocate. Educate yourself and be sure your healthcare team understands that you want to be involved in your care and treatment decisions. Most will be happy that you're committed to doing it right! Don't worry, things will work out, they always do! Staying positive and focused will see you through this!

http://www.gilead.ca/pdf/ca/harvoni_pm_english.pdf



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Thanks, for all your help. I will contact the dr. in the morning and ask him (His Nurse) what she thinks about changing the script to 24 weeks instead of 12. I have a feeling thats going to be a nightmare with all I went through just to get it through insurance. I wonder once your approved if it will be as big of hassle getting it changed to 24. They have me doing a blood test in 6 weeks. This forum is great! I can't get answers anywhere.Glad I found you all.

Thanks
Ron

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55 YO, 30 Years. GT-1. Cirrosis AST 108 ALT 207 TX HCA RNA 7.03 SOT Harvoni-5/16/2015 EOT 08/07/2015

4 Week Blood Test after SOT AST 20 ALT 32 HCA RNA *Below the limit of Quantitation <15* H



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Hello Ronald

Welcome to the forum, you have found a good place with insightful people that care about those under treatment for HCV.

Tig has answered most all of your questions accurately, the only thing I would suggest IMO is totally confirm with your doctor your cirrhosis rating/status because if its F3-F4 then 24 weeks is worth considering and actually is recommended by the FDA & the company that developed the drug "Gilead Science".

What ever happens we will be here for you.

matt 



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 

Tig


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Glad to help. The fibrosis score of F2-3 is not considered cirrhosis. F3 is considered advanced but not cirrhotic. In that case 12 weeks is the recognized protocol. If you have treated before, 24 weeks is often prescribed, but times are changing and the success rates are very high for most treatment lengths. They also include Ribavirin in some cases to provide a bit more oomph, but the extra help only raises the chances of success by 1-2%. When you're talking about 95 +\-% without it, the need is in question. Your doctor will know more about that if asked.

PS: If your viral load was less than 6 million, you would be eligible for the 8 week course of treatment. At 10.7 million, you want 12 weeks.



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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My viral load was like 25 million which is high i guess, and it dissapeared on my 2week labs.  Have faith in this medicine. Just take it everyday. It is easily tolerated. I think some antibiotics have way more bad effects than this does.. i am on last bottle of 12 week treatment it is a walk in the park. Just take the info and advice of these great people and you will be free before you know it

Peace 



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Thanks for your help Tig. Let me correct the Ultrasound came back with F2 - F3. The Fibrosis Scan came back and they called me and said I had Cirrhosis but did not give me a stage. With my high Viral load you think they should have went with the 24 week instead of the 12. If thats the case I probably need to start the fight with them now. Seeing how long it took to get approved.

Thanks again

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55 YO, 30 Years. GT-1. Cirrosis AST 108 ALT 207 TX HCA RNA 7.03 SOT Harvoni-5/16/2015 EOT 08/07/2015

4 Week Blood Test after SOT AST 20 ALT 32 HCA RNA *Below the limit of Quantitation <15* H

Tig


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Hi Sir,

Welcome to the forum, I'm glad you're here! I'll do my best to answer your questions. The tests you describe are very common in the diagnostic process.

Your glucose levels are slightly elevated at 124. I have to ask if that was a fasting test? If you had anything to eat or drink before that, it can be abnormally elevated. If you had had something to eat or drink (besides water) it should be redone. The A1C glucose test can be done anytime of the day without fasting.

The AST and ALT are elevated and that's very common to anyone with HCV. As the disease progresses and liver cells become damaged, they release an enzyme into the blood that indicates something is wrong. The ALT is more often higher than than the AST. Both can be far more elevated than yours in many cases, and they can fluctuate up and down. Often when cirrhosis is involved, the ALT will fall below the AST. Use our search function above and enter those two terms for more discussion on it.

The HCV RNA results both mean the same thing. Your test indicates a viral load of 10,715,871 IU/ml (international units per milliliter). A viral load of 10.7 million is considered high, but doesn't impact the likelihood of you being able to successfully treat this disease. In some cases it may indicate the need to extend treatment longer. The RNA score of 7.03 is the same as the 10.7 million score expressed in an exponential format. They don't refer to that much, but it still shows up on the results. The viral load can fluctuate too.

The fibrosis score you provided is fairly difficult to comment on. The fibrosis stages go from F0 to F4. A score of F2-4 can mean a lot of things. F4 is considered cirrhosis. if your doctor (and you) are overly concerned, another Fibroscan or biopsy needs to be performed. I would trust your doctor to make that determination. As you already experienced, the insurance companies want an accurate determination because it determines the need for and length of treatment in most cases. Again this is something your doctor initially discusses with the insurance provider.

Sounds like things are moving forward and you can rest assured that Harvoni is some of the best stuff available and you should do great. Please look around the forum and look through the Forum Information section for lots of tips on understanding the forum in general. If you have any questions at all, just let us know!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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The Dr. prescribed Harvoni back in October and it took this long to get approved through BBSFL. I was afraid they wouldn't approve it. Once approved I was afraid of the cost. I was thinking it would cost me thousands of dollars and it turned out to be a 5.00 Copay 15.00 for the whole treatment. They first did a ultrasound that said I was between stage 2-4 Fibrosis. BBC wanted a Biopsy my doctor refused and did a Fibrosis scan. When the nurse called from the drs they said I had Cirrhosis  and asked if I was told this and I told them no. They did not give me a stage. These are the the numbers on I had on the Comprehensive Metabolic Panel and I don't know what they mean any help would be appreciated. They want me to go for a blood test in 6 weeks I guess to see if its working.

I will only give the abnormals

Glucose 124 Should be between 65-99

AST 108 Should be between 10-35

Alt 207 Should be between 9-46

HCV RNA 10715871

HCV RNA 7.03

Thanks for the help

 



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55 YO, 30 Years. GT-1. Cirrosis AST 108 ALT 207 TX HCA RNA 7.03 SOT Harvoni-5/16/2015 EOT 08/07/2015

4 Week Blood Test after SOT AST 20 ALT 32 HCA RNA *Below the limit of Quantitation <15* H

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