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Post Info TOPIC: Anxiety About Starting Harvoni


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Hi Tom. What a nice update on yourself. It's nice to see reports where the only side effect is feeling better!  Thanks for the report, surfs up!!   RC



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   

Tom


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Late to this thread, and probably no good to sweet Liz...  10 weeks down and two to go for me!  Harvoni is cake!  I'm back up to six mile runs after a year of four miles. Surfed critical TS Colin surf Monday and Tuesday (poorly, but it wasn't Harvoni's fault). It didn't stop my tooth from getting infected, but it didn't stop effective antibiotic therapy nor a surprisingly not-so-bad root canal.  I'm sleeping eight hours a night with enhanced adventures/dreams still (and no complaints there). My work performance has been very solid under challenging loads and expectations. The lack of side effects is stunning!

Is there any reason I'd warn against this therapy? No! I plan on living the next 60years WO Hep C!



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60 yo; Cntrcted HCV mid 70s; Diagnosed 92; Gen1a; VL pre-Tx 10.3M; AST/ALT 44/36 F-scan F1/7.4; Approved for 12 wk Harvoni 03.28.16; Tx began 04.04.16 EOT 06.26.16. SVR 09.19.16 



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Good morning Saturday. Good morning forum family. Good morning Liz. Day 4 is upon you Liz, how's it going?I find myself looking to this thread daily and many times a day because I want everyone to cure. And the answer to the cure is in these new treatment drugs, and they work best ingested, not sitting in the pill bottle in the cup board. I'm not being harsh on you Liz, Just being your big brother giving you a little nudge!! I care, we care. I'm thinking of you and can't wait to get a update from you.   RC



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   



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Lovely nightowl - braveheart you are!, you have stepped off that "edge", that diving board, whatever scary analogy you want to use. You've jumped in, you'll see ... just how wonderfully rewarding this will be. I loved that you found that "other" message to you - the horoscope, and, how intently you listened to all the voices. I said it was "Mother" in a bottle, toeman (RC) had it right saying it was like his "Brother" in a bottle, loopylisa has her "hero/St. George saviour" in a bottle - you will find that too. For now you have all of us and your horoscope in that bottle! But you are in there too - as YOU are the one saving yourself!! (A real "message in a bottle"!) Wonderful thing. Aren't we all great, and brave too! I agree jimmy, life is grand. Loopylisa, I lol'd with that vision of your husband chasing you around the diningroom table. Almost the same way we were kinda pursuing nightowl to get started on her new page and her NEW chance of getting a healthy liver back! I walked with you too gojoman, we know the trail! smile C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Hi Liz,

I am also glad you have started.  I drank about 2.5 liters of water a day and it was enough for me. I think everyone is different and body weight could make a difference as well.

I agree, that the pain you are feeling around your kidneys probably has nothing to do with the Harvoni or the water. You are anxious about it and that alone can cause any number of things since you will hyper focus on something that might not be anywhere as bad as you believe it to be. Many of us have had anxieties so we understand this all to well. 

It is true that kidney function tests will be done during your treatment and they will probably all be just fine. Try to relax, easier said than done but really as you said, none of the side effects you were expecting have materialized and they probably won't either. It is just that well tolerated.

Keep us posted and check in often and just know that you are getting healthier every day.

SF

 



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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *



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Hi Liz,

your kidneys are just above your waist and don't really hurt unless they are infected in my experience. I had a kidney infection once and it was very painful and up there. I started taking diuretics with my treatment because I had ascites (fluid in the abdomen) and that put a lot of strain on my kidneys but there was no pain and they returned to normal anyway.

Dr Hanrahan is so knowledgeabLe! Was just trying to say that I wouldn't be worried about your kidneys, they don't get irreparable damage in a short time and drinking water is the best thing for them. It's not work for them when more water passes through, more of a soothing cleanse.

Fart away. If a bit of abdominal discomfort is all it takes to kill a dragon you're winning. i think you will find the pain settles down as your body adjusts to treatment. 

Keep on trucken. We're proud of you!!!

Syd



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Congrats on starting your treatment. Trust me I understand the anxiety. I put my treatment off over a month. I cried every other day scared to death to swallow that pill. I went to heart doc thinking my heart couldn't handle the medication being I had low heart rate. They did stress text imaging test and said you good to go. Basically I ran out of excuses. People on this site help me so much. I pm them a lot and some of them took the time and called me. So about a month ago I drove down to duke hospital and swallowed the pill thinking if something happens I would be there. I walked on there trail for about 2 hrs and didn't feel anything and 30 days later nothing no side affects. I hope my testimony helps you. I went to give blood yesterday and hope results will be good on Monday. I wish you the best.

 

mike



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Geno 1A, Dx 1992, VL.2.6 m, Tx naive, Fibro 14.4, ALT-82, AST-36, Platelets 210
Harvoni 12 wks, SOT 5-11-16

 

 

 



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Don't worry too much about it.  You've reported it to your doctor and s/he will conduct kidney function tests as part of your labs during treatment bloods.

Nearly any drug can affect the kidneys but the DAAs are not known to cause damage in the overwhelming number of patients. 

 



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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Congrats Liz on getting started with saving your own life. On thing Tig reminded me of is that salt (sodium) other than what some foods naturally have is very bad for a cirrhotic liver like mine but even a non cirrhotic liver which HCV has been beating on can pitch a fit if you eat a bunch of salty foods. Just thought I'd mention that in case... Generally females require a little less water than males but 3 liters should be your absolute minimum unless your doctor has reason you should drink less. A darker shade of yellow urine is a 'inadequate hydration' red flag. As with many medicines, the body reacts and needs some time to adjust. You have just started a war inside you with that dragon but he'll run out of ammunition very quickly. Be prepared for victory in your very near future. thumb.gif



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Tig


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Good morning, Liz! I hope you had a restful night and those aches in your back are letting up. The pain in your back sounds like it could be a bit of stress related muscle tension. The muscles in the middle of my back and kidneys often tighten up when I over stress. Try a heating pad on low for a few hours (intermittently) and find that happy place in your mind. Try some relaxation techniques and soothing music to get your mind off the task at hand. It won't take long for you to realize there aren't going to be any issues you can't easily handle.

The windy reaction should slow down soon. Take a lok at your diet and if you're eating anything that might be responsible, cut back. No cabbage or brussel sprouts for the time being! Might want to give the chili a pass for now too! It takes a couple weeks for your system to adjust and after that it should be smooth sailing. Some people notice no changes at all, others are very mild, so you may be windy for a few days. Just check for someone behind you first! Don't want to scare anyone, lol!

Keep up the full 3-4 liters of water. It won't hurt your kidneys!



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Tig

68yo 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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Hi LIZ, good to see you survived that dreaded first pill, like Loopy Lisa said, each one will get better.  Come to think of it you should have #2 down by now??  How you doing? At the end of both my treatments it was a bitter sweet loss to stop taking the pills. I had so much hope in them curing me that they were like my brother, there to watch my back,like best friends and family , like the members on this forum!  We got your back Liz!   RC



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Good Morning Liz, I hope you are feeling a bit better.

Please remember, based on what you just wrote you have increased your normal intake of water four fold in a day. The 4 Liters is just about right to offset side affects so I advise you not cut back.

Such an increase in a short period of time will take some getting used to. The key is in the color of the urine. You don't want it crystal clear. A very pale yellow is ideal and please remember, you are removing toxins from the body and not simply pissing in the wind. biggrin

Stick with it, nothing bad is happening unless you happen to be a Dragon. That guy is not happy right now and his days are numbered. Keep up he great work!

 

Your Brother!

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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So glad to hear you started Liz. Try some ginger; be it tea, ginger ale, capsules for the tummy. 



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Hi Nightowl,

Congratulations on taking the first pills...

The tummy problems are probably anxiety induced, I have a similar problem if I get anxious without taking medications. It can be rather embarrassing when I start re in acting "Gone with the Wind!"

I can recommend watching a few comedies to help you relax, each pill will get easier to take as you will see nothing really bad happens.

You are on your way to SVR,  that is exciting! :D

Keep going, just think, you are worth it! :D

 

 

 

 

 



-- Edited by Loopy Lisa on Thursday 9th of June 2016 02:24:51 AM

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VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 



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Hi just checking in ... still have cramping in the intestinal area and aching in kidney region. My specialist GE said that he had not heard of this reaction before and to try some peppermint tea. To me it feels like my kidneys are struggling either with processing dead virus, processing a potent antiviral drug or perhaps I've been overloading them with too much water .... either way they are achey (lower back pain on both sides of my hips) and the wind below just keeps on blowing! The pain makes me anxious as I'm concerned the drug is hurting my kidneys. I will wait another 24hrs and cut down my water intake today (drank 4 litres yesterday when I normally struggle to drink 1)! These problems aside ... I'm amazed I have actually started this treatment ... and none of the side effects I was expecting/dreading have happened ... at least not yet

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Liz 48 yrs

Genotype 1a

DX: 1988

Biopsy 1995 - mild inflammation/piecemeal necrosis

Viral Load: 1.1 mil

Treatment naive ... currently on Harvoni (8 Weeks)

 



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Excellent News Liz,

Personally I did not experience any stomach discomfort or changes. If anything, I found that I was quite regular with no adverse effects.  I would agree that your experience could have been based on nerves as you anxiously waited for something terrible to happen ... but it didn't. I am confident by the time you read this, you will feel better about it knowing nothing bad is going to happen,

I am also confident that you will soon be helping someone new to take their first pill. Many of us go through that and it's normal. It's really normal for those who are anxious about taking medication .. like me.   I would take another 12 weeks if I have to without batting an eye. I sort of wished I had 24 weeks but it is not the protocol for tx naive, Please keep us updated. You are on your way to beating this thing.

Cheers

SF



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *



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Hi Liz, Good to see you got that first one down. We really are all proud of you!  I don't have any experance with Ledipasvir, But have taken Sofosbuvir on two treatments and did not experance any stomach issues. They would have done trials on just Ledipasvir with healthy people and hcv infected people.It would be nice to see the S/X on those groups just taking Ledipasvir. I will look into that and post any results I get. Hopefully the next pill sits a little better with you. Keep up the good work---RC

 

Went out looking for phase 1 or 2  trials on just Led, cant find any?? It would be interesting to see what the S/X are on just LED



-- Edited by robertsamx on Wednesday 8th of June 2016 09:04:58 PM

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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   

Tig


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That 4 - 4.5 hour window fits right in with Shadowfax's statement yesterday regarding the issue of vomiting post dose. He was told anything after 6 hours and there was no worry about whether the medication had been metabolized. That time frame would allow approximately 1 - 1.5 hours of leeway. Good to know.



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Tig

68yo 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 pharmacokinetic properties of ledipasvir, sofosbuvir, and the predominant circulating metabolite GS-331007 have been evaluated in healthy adult subjects and in subjects with chronic hepatitis C. Following oral administration of HARVONI, ledipasvir median peak concentrations were observed 4 to 4.5 hours post-dose. Sofosbuvir was absorbed quickly and the peak median plasma concentration was observed ~0.8 to 1 hour post-dose. Median peak plasma concentration of GS-331007 was observed between 3.5 to 4 hours post-dose."

I needed to know this due to my taking Omeprazol. This has to do with the need for taking the two at the same time. Harvoni, in particular Ledipasvir requires an acidic environment to be effective. Omeprazol absorbs quickly like in an hour but is time released so if taken at the same time it allows for the most acidic time prior to the PPI's to kick in. Taking Omeprazol 4 hours prior to Harvoni would be a disaster as far as effectiveness goes.

With the peak concentration in the plasma being in the 4 hour range I would assume that would be the most likely time for any noticeable affects of the drug. I could of course be mistaken on that.

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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JimmyK wrote:

 

The four hour mark is about the height of the uptake of the drugs. 

 


Spot on.  Exactly 4 hours after I took my first dose that slightly toxic feeling I've had for 20 years started to lift.  I noticed it but I thought I must have been imagining it.  How could a tablet work so quickly when I've had this illness for so long?  But, lo and behold, the goodly effect continued and, in fact, only got better over time.



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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Also in that your GE / GI was with you when you took the pill let him know and see if he can give you something that is appropriate. We do not advise here on WHAT to take but we do always point you to your Doctor knowing they are best equipped to deal with you in your unique needs based on you history.

 

All my best!

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Hi Liz

Super well-done to you, as I know how much of a block it was to you.

Gastrointestinal side-effects are fairly common.  In fact, I think Canuck came up for a good term for the symptom: "roiling" of the stomach.

For me, I had flu-like symptoms (tiredness, hot/cold chills and a sense of being a bit whacked out from a powerful drug combo) but these were only bad (and even then they were really mild, in the bigger scheme of things) for 3 days and by  the end of week 2 they were gone completely.

But the gastro thing I had on-and-off (but mostly off) for much of the treatment.  Some occasional loose stools and some mild constipation at others.  And some roiling after meals.  I found drinking lots of fluid and eating smaller amounts of foods but more frequently helped.  In fact, I think the latter 2 apply well generally to living with the effects of liver damage, as I can get bloated quite easily.

It won't be a substantial problem for you I strongly suspect.  Give it a few days.

Pablo



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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Good deal Liz, again, we are all very proud of you.

There are reports of some folks being constipated, while others have diarrhea, and others still no noticeable symptoms related to the bowels. Therefore some take laxatives and others some sort of product designed to get your xxxx together.

The four hour mark is about the height of the uptake of the drugs. I would assume that your state of nervousness would exasperate things a bit until you come to realize this is no big deal. 

You are asking if they are concerning I would say no, but then again we aren't dating. LOL Sorry trying to get you to relax.

Others will chime in regarding proper diet and things that may be helpful. Myself, due to taking Omeprazol I take mine at the same time at 5:55a on an empty stomach.

As you can well imagine, given I take mine at 5:55a I may not be the best authority on Harvoni and ripping one ( or ten). Normal Rooster crowing routine for me. biggrin

 

Hang in these Sis and make a point of actually enjoying this. Fact is I am and you can!

 

JimmyK

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Fourlocos .. thankyou x

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Liz 48 yrs

Genotype 1a

DX: 1988

Biopsy 1995 - mild inflammation/piecemeal necrosis

Viral Load: 1.1 mil

Treatment naive ... currently on Harvoni (8 Weeks)

 



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Also Jimmy I would be more than happy to help others in the future in any way I can once I get myself stabilized, sort out this pain and get some sleep ...

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Liz 48 yrs

Genotype 1a

DX: 1988

Biopsy 1995 - mild inflammation/piecemeal necrosis

Viral Load: 1.1 mil

Treatment naive ... currently on Harvoni (8 Weeks)

 



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Congratulations Night Owl.

We are all so proud and happy for you.

As for the pain and farting, at this stage I would put it down to nerves. unless Jimmys got a problem he's been hiding from us. jimmmiiieeeeee ?????? 

Keep on trucking.

Syd



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Hi everyone. After tears and prolonged negotiations with my GE I took my first tablet around 17 hours ago. About four hours later I got lower abdominal cramping /sharp pains and a lot of .... um ... flatulence .... and it has been pretty constant ever since. Can I please ask if anyone else had these symptoms ... they are very concerning? Like bad chronic wind pain in the intestines ... thanks :(

__________________

Liz 48 yrs

Genotype 1a

DX: 1988

Biopsy 1995 - mild inflammation/piecemeal necrosis

Viral Load: 1.1 mil

Treatment naive ... currently on Harvoni (8 Weeks)

 



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Nightowl I am here and will check all evening to see if you need me.  Just verbalizing your fears and typing them out can help.  I love to just do the what ifs...... and then work on real world answers to those fears.  My fear of dying from the Hep C destroying my liver was much greater than my fear of treatment.  I love that someone recommended thinking of that golden football as your hero and it will be in the end.  Hope your visit goes well and let's get this party started!  Take that first pill and before long you will be helping the next person...... pay it forward!



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!



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We are all proud of you Liz. Now for the fine print I was holding back.

 

Once you see how easy it is, on this regiment in particular, to do battle with this Dragon, the brothers and sisters of this Forum are counting on you to share your experience down the road here.

Someone just like you will come in frightened and need a helping hand. They will need the nudge necessary to get them to start treatment and overcome the fear of doing so. This is when you will be greatly needed. To take the wings of an Angel and come to that persons side. Let them know what you have been through and how unfounded the fears are.

There is no need to thank us here. Instead, become us. Lend a hand to others. There is no greater joy presently than to know your input has in fact, assisted in saving a life.

Angels Wings Liz. Angels Wings.

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Hi Liz,

You've probably taken the first treatment sat at home waiting for effects.

I have a fear of medical needles, which is illogical since I have tattoos. But when it comes to any medical procedure that irrational fear starts popping in my head. I got myself in a total mess before my first interferon shot, my husband was gently trying to talk me around and several times ended up chasing after me galloping around the dining table. In retrospect it is really funny, especially as I sat there like a stunned deer in a car headlight waiting for adverse affect. Nothing happened after four hours, no flu symptom, nothing.

As you know from your studies, fear has no logic, it is just based on a presumption of worse case scenario. What I can honestly say is, I have become more and more desensitized towards medical needles. I now have my bloods drawn without a fuss, I actually just try to focus on keeping the nurses safe and revert my thinking away to anything but what is happening.

I used to have daily panic attacks for about seven years. Every day I told myself, I am one panic attack nearer to my last, and gradually stopped fighting them and went with them. One day, I woke up and there was nothing, I decided that I was not going to listen to the fear, it made me miserable, and cut those negative thoughts out before they took a grip. I now live very happily without panic, I decided I am in charge and not those negative thoughts.

These medicines are not your enemy, the virus is. You could try to look at them as your hero, and change how you think about them. I have a complete  mind set about my medicines I'm about to begin (Sofosbuvir and Daclasvir) that they are my hero, and I know they are going to save my liver, and defeat my virus. Any side effects I may get, that is the virus going down, as they are St. George and he is slaying that dragon.

You will probably feel a little better after the first pill, that is the worst part, but as you already know, if you are having a hard time there are a number of people here ready to hold you up when you feel you are sinking.

I am excited for you that you are going to defeat this virus that has been 30 years a part of your life. Imagine, everyday waking up knowing you are virus free!!

I am thinking about you! x

 

 

 



-- Edited by Loopy Lisa on Wednesday 8th of June 2016 02:42:01 AM

__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 



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That a girl Liz! After you get started on treatment you'll look back and realize there was nothing to fear. I did 24 weeks of Harvoni and felt better every day of my treatment. I know what side effects are. I'm a long term survivor of HIV and in bad health and a previous treatment involving ribavirin was very hard on me. But not Harvoni. You'll see. There is plenty of knowledge around here to answer any questions you'll have and lots of support, as you can already tell. So jump on board and join us on our journey to a happy HCV free life. We are glad you are here! smile

PS: Awesome horoscope!



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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LIZ--- ALL I CAN SAY IS  

 

 

                                    WOW



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Tig56 wrote:

I just called Gilead's Support Path help line to get their input on this. I spoke with one of the RN's and described the concerns regarding the taking of a dose of Harvoni and then becoming nauseated enough to throw up the medication. It is Gilead's position that if you throw up your medication, under no circumstances should you take another dose in a 24 hour period, no exceptions. She said doubling the dose in a 24 hour period, provides a higher risk of adverse reaction than does waiting for the next scheduled dose. Under all circumstances, they recommend you notifying your doctor of the incident immediately.


 Thank you for that Tig,

It makes no sense why the pharmacies say differently but I only relayed what I was told emphatically.

 



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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *



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Just about to walk out the door and I thought I'd check my horoscope for today ... Jonathan Cainer ... Taurus:   'Why wouldn't your current situation lead you to the most desirable outcome? What forces would ever dare to interfere with your journey towards a much-deserved and highly delightful destiny? Whose miserable, petty wrecking-agenda could ever derail your train to triumph? There is only one person with the power to create a problem of such magnitude. That's the person whose eyes are reading this forecast right now! Don't do that to yourself! Muster confidence and relax, today.'

"derail your train to triumph" ... lol ... You can't make this stuff up!

See you on the other side!

PS when I'm not so panicked I promise to reply to each and every kind message you have posted!  I don't think I would be doing this today had I not found this group.  Forever greatful x



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Liz 48 yrs

Genotype 1a

DX: 1988

Biopsy 1995 - mild inflammation/piecemeal necrosis

Viral Load: 1.1 mil

Treatment naive ... currently on Harvoni (8 Weeks)

 



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You are in the right place sister and we know you can do it! You have all the support in the world right here and you are stronger than you think.

We are with you!

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."

Tig


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Hi Liz,

Just take a deep breath and walk out that door! Don't look back, leave the fear and apprehension behind. You have already shown yourself and all of us here, that you've got what it takes to do this. Confidence is yours, seize it and make it work for you. This is a fabulous opportunity to prove to yourself that you've got the strength to approach this head on and win. The future looks great and it belongs to you!

Kiss that first pill and tell it to tell the Dragon goodbye and good riddance!  



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Tig

68yo 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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Hi Liz, You can do this you can. I have been on this forum for over two years and have never read a thread where someone couldent get that first pill down. Nore have I seen a thread where anyone had a bad S/X from the first one down the hatch. Beat the fear then sleigh the beast!!    We are all looking out for you! You WILL be ok.   RC



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   



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Hi everybody ... sorry I haven't posted yesterday ... full-on melt-down lol! Today is the day I visit my GE (Iin 3 hrs) to take my first tablet with him. Fourlocos we sound like twins ... thank you so much! And thanks to everyone here for your words of encouragement and even a little tough-love. I truly am blessed to have found you all ... and Fourlocos you may recieve a teary message later toda6 ;). The countdown is on ... 3 hours ... I really hope I can find the strength to do this today. The housework is done. Shopping done. Batch cooking done. No more excuses. Wish me luck and BIG LOVE TO YOU ALL! I'm off to the station for the 2pm train xx

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Liz 48 yrs

Genotype 1a

DX: 1988

Biopsy 1995 - mild inflammation/piecemeal necrosis

Viral Load: 1.1 mil

Treatment naive ... currently on Harvoni (8 Weeks)

 

Tig


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Hi 4L,

It's always nice to see you checking in! That was a very kind offer of support. Thanks for all your help, as always! I hope you're doing well and look forward to your visits!!



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Tig

68yo 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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Hi

I am just the person your looking for :)   I lurk around here still even though I am 16 months post 8 weeks of Harvoni.  I was successful I am happy to say in clearing the virus.  Okay..... I also have a history of panic disorder and also couldn't even leave my house for a few months over 30 years ago.  With the help of no medication and a wonderful therapist I worked on it and beat it.  I went from not being able to leave the house to working in the public, public speaking and not giving a crap about anxiety anymore!!!  I have helped many people get through the fears of their first few panic attacks.  I also fear medication and vitamins and so many things.  My doctor knows me well and I avoid everything.  So Harvoni came along..... with the encouragement of those here, the wonderful Tig, and my son Nick I took that first pill.  It's huge and I thought dear god how will I get that down my throat.  But I did.  And I didn't feel so hot that first night.  Not anxious but it made me dizzy just a wee bit.  Nothing horrid.  I kept going.   I slept great on it.  Sure I had sides.  Still have a few issues.  BUT while on treatment I was very relaxed from the drug.  I felt drugged in a way but I felt mellow.  I didn't sweat the small stuff and actually liked feeling so chilled out.  I miss that relaxed I don't care attitude it brought me for 8 weeks.  So please take the first pill and if you need to reach out to me do so.  I will sit with you and be your support for the first few hours to make sure your relaxed and ready for bed!  Just ask I am here.  I want to give back the help that was given to me here.



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!

Tig


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I just called Gilead's Support Path help line to get their input on this. I spoke with one of the RN's and described the concerns regarding the taking of a dose of Harvoni and then becoming nauseated enough to throw up the medication. It is Gilead's position that if you throw up your medication, under no circumstances should you take another dose in a 24 hour period, no exceptions. She said doubling the dose in a 24 hour period, provides a higher risk of adverse reaction than does waiting for the next scheduled dose. Under all circumstances, they recommend you notifying your doctor of the incident immediately.



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Tig

68yo 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 need to chime in here regarding length of time you are ok if you should vomit and lose the pill. I was very specifically told by the specialty pharmacy that issued mine that the magic number for Harvoni is SIX hours. If I lost it before then, call them and they would replace it but any time after that, not to be worried.

It seems it is a very slow pill to get into your system and again, they were clear and adamant about this very thing. I never got sick, heck I was only nauseous one day in 84.

Call your pharmacy and ask them. The rules on this should not change from one to another but be specified by the manufacturer.

 

Good luck and start the ride.

SF 



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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *

Tig


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Snickers or a Pay Day candy bar? Definitely.... Nutty, caramel, glucose goodness, just waiting for me to jump!  Add a bag of those new Sweet Chili Doritos and a Yoo Hoo to wash it all down and I'm in Heaven. no

Of course I'm kidding, about the Yoo Hoo anyway! But that's what happens with something that's worth it's weight in gold! Returning to good health is priceless, do whatever it takes to achieve it.



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Tig

68yo 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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 Tig, does the same thing go for a quickley eaten snickers bar??  

 Liz--   DOWN THE HATCH !!    JUST DO IT !!        RC



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Hi Liz

I tend to agree with Jimmy in that you are putting off thanking the medication, but I trust you've got your questions answered.  My two pence worth is:

1) Re water, the Mayo Clinic recommends 3 litres of fluid a day for men and 2.5 for women.  But for reasons I don't truly understand thirst increases during DAA treatment, especially at the beginning, and the more one drinks the fewer side effects one gets.  So you could up the intake to 4 litres a day.  If you do go overboard and drink, say, 10 litres a day make sure it's not all water just in case you induce hyponatraemia (low sodium)...drink the isotonic drinks with electrolytes in them.

2. Re vomiting, it won't happen.  But if it did, do like Tig suggests.

3. Re an infection, just run any meds by your doctor.  You want to avoid any medication that induces the liver's metabolising enzymes (called Cyp something or other) in order that you do not reduce the plasma level of the DAA combo you are on.  Most antibiotics are fine as far as I am aware.

Pablo



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.

Tig


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Hi Liz,

Regarding the vomiting of your medication, if you vomit it up immediately and see it, wash it off and take it again. At $1200 bucks a pop, I'll swallow just about anything twice. biggrin  In the rare event that it happens, if it has been 30-60 minutes since you took it, it's most likely been absorbed and moved on into the small bowel anyway. Never take two doses of Harvoni in the same 24 hour period. Always check with your doctor if you have a concern about this being an issue. There are a number of medications that can be recommended for individuals that have persistent nausea. I doubt seriously it's going to be a problem though. Queasy stomachs can often be calmed with food, ginger ale (we've got a good recipe) and of course some medications that your doctor can recommend. Oh..... if you're worried about food poisoning, don't. That's extremely rare and if you're paying close attention to eating a healthy, balanced diet, you should only be purchasing healthy choices anyway. Proper handling is key for any food items. Food poisoning can come from a lot of places, but it's not typically something to worry about. Stay out of fast food joints, the Class B and below restaurants and you should be good to go! Routine common sense is the best approach.

I haven't heard of any antibiotic presenting a problem with Harvoni. The manufacturers literature always has a section related to adverse reactions and are quite informative when questions like that occur. Any physician and pharmacy that prescribes something is responsible for checking those interactions prior to releasing the medication anyway. You'll be fine if that should arise.

Are you getting close? I hope we've about convinced you this is going to be a smooth ride. Not to worry, okay? Good luck!



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Tig

68yo 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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nightowl wrote:

 1. What is the maximum number of litres of water a day that is save to drink during treatment (web has conflicting answers to this)?

2. What happens if you get an infected tooth or a chest infection (winter flu season here) and need antibiotics during treatment?

3. What if you get food-poisoning during treatment and throw up part of your tablet?


 Hi Liz. You are overthinking this a bit but let me see if I can help.

1) Instead of trying to consider what is too much, let's simply consider what is enough. Drinking a gallon per day is kind of rule of thumb here. That is 128 fluid oz. If you break that up into 8 oz glasses, and generally are awake 16 hours in a day, then if you nurse one glass per hour you are way ahead yet not too much as to remove all electrolytes. Remember also hydration is provided in part by water but many other sources as well. I use a Couple of glasses of coconut water to break the boredom of just plain water. Toss a few blueberries in the glass. Don't feel like you need to keep a hose hooked up, LOL drink a glass or slightly less per hours and no worries.

2) If you need antibiotics then go to your Doctor and they will prescribe them. There are no interactions with antibiotics.

3) First and foremost. FIRE THE COOK. Then after you fired the guy and quit barfing, call your specialty pharmacy and advise them. They will know exactly the best way to deal with it.

I am on day 53, no issues and I have 115 days remaining and no worries about it. You can do this Liz.

Your turn now...

1. What is the maximum number of years you can safely expect to live untreated?

2. What happens if you get an extreme case of liver disease because you failed to start treatment?

3. What if you get extremely high levels of ammonia in your blood because your liver is failing?

Liz the fact is these questions are more valid than what if you get food poisoning while on treatment. I am not being mean either, I want you to take our hands, and trust we know that you will be fine and we will be here for you.

 

JimmyK

 

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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If you need antibiotics while on treatment check with doc that gave you the Harvoni. It did not affect my monthly cycle at all. Water...the more the merrier. Try not to project and know that it really is OK. Have faith that if we did it, so can you!

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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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*safe

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Liz 48 yrs

Genotype 1a

DX: 1988

Biopsy 1995 - mild inflammation/piecemeal necrosis

Viral Load: 1.1 mil

Treatment naive ... currently on Harvoni (8 Weeks)

 



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Hi me again :) Thank you again for all your kind thoughts and suggestions yesterday . I'm still fine-tuning my research and I was wondering if I could possibly ask a few questions please? 1. What is the maximum number of litres of water a day that is save to drink during treatment (web has conflicting answers to this)? 2. What happens if you get an infected tooth or a chest infection (winter flu season here) and need antibiotics during treatment? 3. What if you get food-poisoning during treatment and throw up part of your tablet? 4. BOYS TURN AWAY FROM THE SCREEN NOW - ladies how does treatment affect monthly business meetings and should I perhaps time my first tablet accordingly or just DO IT anytime? It's wonderful to be able to speak to others with real-life experience about these things. Still feeling nervous and not really sleeping much .... I seem to be worrying about anything and everything that could possibly go wrong at the moment :( Hope you are all doing well x

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Liz 48 yrs

Genotype 1a

DX: 1988

Biopsy 1995 - mild inflammation/piecemeal necrosis

Viral Load: 1.1 mil

Treatment naive ... currently on Harvoni (8 Weeks)

 

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