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Post Info TOPIC: hep c VP party
Tig


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Hi Matt,

Welcome to the forum! Sounds like you've had quite a ride so far and I see from your other post, you completed 8 weeks of Harvoni. Congratulations are in order!

If you don't mind, could you start a new thread here in the New Members section? This particular thread was started by our member Bob, and deals with his Viekira Pak treatment. If you can start your own thread, with your great story, I'm certain more people will see it and welcome you into the group. Thanks! We're glad you're here...



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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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Hello All!

I'm new to the site and this is my first post.  I contracted Hep C from a girlfriend back in 2003.  Over this time I developed hyperthyroidism (been on Levythoroxine) and Sarcoidosis (which was once treated with Steroids). The steroids caused my weight to go from 200 to 270 after a year. Between taking opioids for a back injury and the drastically increased appetite from the steroids, I ballooned up in weight. That was 2007 and after 9 months the doctor took me off steroids and put me on metformin for pre-diabetes. Come 2008, the weight dropped off and stopped the Metformin...  This whole time, my VA doctor suggested I address my Hep C. My levels were not dangerously high, but he still wanted me to see a specialist.  I believe this was around 2010 and I met with a group of 4 others that might start the year long Interferon treatment. A psychologist/program director said the odds were that only 1/4 of us (the elderly woman being the only one) would likely finish the intense treatment.  Those were just the simple statistics... I met with the gastro specialist and he said that my levels did not demand that I start treatment immediately, but could wait for new drugs being developed that could cut the treatment time in half... A few more years passed and the doctor said that a new drug was in the pipeline for 3 months of treatment and no interferon, so let's wait...  Now comes 2014 and a number of possibilities, as we all know.  

I actually held off a year, since I now had Type 2 diabetes (along with the other health issues), weighed 270 lbs again and was on Metformin and Glipizide... I thought I'd try to lose some weight and get as healthy as possible, before starting the treatment... It's now September 2015 and the weight hadn't changed. My Hep C levels were a little higher than usual (I apologize for not having exact numbers. Just never inquired), but the treatment was so expensive and you never know if the govt. will say you're not in urgent need, etc.. 

Long story short, I began taking my ONCE a day Harvoni pill and looked out for my lethargy or mood to worsen. A month passed and peculiarly, I just felt like I got back an extra step in my day to day life. Know what I mean?  When I got blood work after a month, I told the doctor I not only had no symptoms, but felt better physically and psychologically... She said that after only a month my levels dropped significantly and that I would only need to take another month (60 days total) of medication... O.K., great. Then what?  Then I return in 3 months (February) to test my blood again and make sure the virus is completely gone.

It's December now (30 days off Harvoni) and I've had no negative side effects. In fact, i had a couple of scares with my sugar levels dropping low. I thought, oh great, now I have to worry about my Type 2 Diabetes sugar levels raising too high from cheating with sweets and now have to make sure I have the right amount of sugar/insulin ratio.  Well, I stopped taking my Glipizide for one day, then two days, etc... and also could eat a 1/2 box of Oreos and my sugar didn't skyrocket... I  thought my diabetes was cured. The nurse said it would make sense that the Hep C effected my liver's ability to process insulin... My primary doctor always said I could determine when to start and stop the insulin medication, i.e., lose the weight, eat healthy and avoid Type 1 diabetes... I no longer am taking Glipizide, but am still on Metformin until I get a full blood work done for Hep C and everything else.

So it's a month off Harvoni and I feel great.  Just to know psychologically that this horrible disease is very possibly eradicated from my system is a relief, but physically I feel better than usual.  I enjoy a dessert on occasion, but still want to get rid of this weight. I'm tall and I may not look obese, but I technically am. And now there is no reason to feel that the monkey is still on my back. I still have some health issues that limit my activity, but I am far from being crippled. I celebrate how fortunate my life is and the second chance been given to live a healthier life.  No way am I going to blow it.

I hope my long winded narration will give a little hope or inspiration to those having a rough time with the treatment or those trying to enter into treatment. It's expensive and I pray that a generic comes out soon or the price just comes down, so that anyone who wants to be treated will be treated.  Keep your heads up, stay strong and God bless!

Matt



-- Edited by MattTheBrat on Sunday 6th of December 2015 12:54:27 AM



-- Edited by MattTheBrat on Sunday 6th of December 2015 01:17:12 AM



-- Edited by MattTheBrat on Sunday 6th of December 2015 01:20:51 AM



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50 y/o, DX 2003, geno 1a,

30 Days post (60 Day/Harvoni) - feel great. No longer need/take Glipizide for Type 2 diabetes.  

* Will provide more specific stats afte Feb. blood work.

Tig


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Outstanding Bob!! Along with the great news that you're UND at week 8, I hope you have gotten some relief from those darn side effects. Let us know how you're feeling. We're right here waiting for your train to pull successfully into that VP Station! The light is shining at the end of that tunnel...  



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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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Well done, Bob, congrats on a great result!

You`re cracking through your 12 weeks and will soon be on the home stretch, every day brings you closer to SVR! 

Keep us posted... 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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YEE-HAA!!! It's working. Keep it up Bob. Think SVR SVR SVR SVR SVR....



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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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Ok finished 2 months of v-pak and riba and test results show that the hep c was non-detected. One month left to go. YEE-HAA

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Tig


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Bob,

There's a few things that will help. The itching can be improved by using an antihistamine like Zyrtec (Certrizine, generic) or Benadryl, with your doctors permission. Don't shower with hot water. Keep it luke warm or cool if you can tolerate it and limit it to every other day. Use a mild soap and shampoo, something like Baby shampoo/soap, Ivory or Aveeno. I used calamine or Caladryl lotion for rashes. It really helps. Don't forget to drink plenty of water and don't scratch!



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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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This is my first round on the vpak and riba, and hope it is the last



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I have had all of the problems everyone else has experienced, a few days last week thought I was dying, shortness of breath, cramps shaky feeling. Feeling better today.

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Hi Bob,

I did the VP with 1200 mg riba.  It's definitely the riba that makes you feel bad.  It causes your hemoglobin and red count drop.  When it drops enough, you start to feel really bad; bone tired, zero energy, short of breath, huffing and puffing at any little bit of activity.  'Like death warmed over' describes it perfectly.  When mine dropped, my doctor reduced my riba dose, and a week later I felt fairy normal again.  Drinking lots of water really helped with my side effects, and once I wasn't overwhelmed by fatigue, I was better able to deal with the other side effects.  Make sure you let your doc know how you feel. 

I'm really sorry you feel so bad, but remember it's only six more weeks, and that's hardly a blink of an eye compared to the goal you're working toward.  You can do this!  Good luck!

Penny

 



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65;  Dx 1997 1a; VL 1.1m; TX naïve; SOT 7/20/15; 12 wks viek/riba 1200mg

09/14/15 draw: Undetected 8 wks into tx

10/12/15 draw: Undetected at EOT

01/05/16 draw: Undetected at E0T+12



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 I remember how riba made me feel so I'm sorry your feeling bad Bob. You're half way through so hang in there and keep your eye on the prize. Keep telling yourself SVR,SVR,SVR,SVR,SVR,SVR,SVR..... smile



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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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From one Bob to the other Bob-- I know what your feeling on that Riba.  I"m almost 6 weeks into 1200 mg a day of that stuff and its the pits. The last two days have been tough! My wife did the V-Pac  W/O riba and really dident have any S/X, so most likley your S/X are all Riba. Your on a good protocol so  hang in there and finish the job.  Also wanted you to know that the itch hasent been to bad,and last time on riba as I remember the itch wasent an issue. Some people just react to riba with bad itching, sorry your one of them.My forarms seem to get red and itch some days with a slight rash on arms but thats it.   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   

Tig


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Hey Bob,

Sorry to hear that... I can only relate to your experience with the Ribavirin. That stuff is the pits. It causes substantial anemia and can really drag you down. Have you had any recent blood work? I'm curious to know what your red blood cell count and hemoglobin are. I can only imagine they're low. Rest is your best friend right now. Avoid situations that might anger you and stay out of the sun. Lastly, keep hydrating like nobody's business! Fill us in on the problems, hopefully we can provide some advice. 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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6 weeks into the treatment, feel like death warmed over

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Bob: Another thing to be careful with depending on your location now is sun exposure.  I went through most of your side effects, except the itching. During week 8-ish I could not really not  stay outside long enough to cut grass. My arms felt heavy and I felt like I had weights strapped to my legs. Be carefull. The fatigue was the nagging one. Stick to your regiment, drink water and do take your pills with a meal. By week 6 you should become acustomed the Mr. Ribavirin. He's a pesky bugger.  Good luck now!



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60 yrs. Geno1b 2001. 9mil. VL. �Failed Post Riba/Peg tx. 2006 46 weeks. Diagnosed 1A 2015(?) F3 fibr. 225k VL. Vikera/Riba 12 weeks 3/20/2015. "Undetected" start to finish. Undetected 1yr post tx.



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HI Bob, yes, those all sound like classic ribavirin side effects.

I can give you a few tips which might help.  For the nausea, you could try eating small and often rather than attempting big meals, and make sure you always have your riba pills with food. 

Insomnia can be a real nuisance but some people find that moving the time of the 2nd dose of riba to an earlier time helps.  For the itching, try bathing or showering in cooler water and wearing loose clothing, especially at night

We have a `Search` button at the top of the page, right in the middle, and if you type in a key word for example `itching` or `nausea`, a list of previous discussion will come up.  You`ll find lots of information about side effect management in past threads.

Best of luck with your tests!  Let us know when you have those results. 



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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 had the fibroscan. But the 8.2 was from the blood work

Yes with the v pak 3 riba in the morning and 2 in the evening.

Thanks for the info. Rob



-- Edited by streetbob7 on Wednesday 14th of October 2015 07:33:47 PM

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Tig


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Hi Bob,

Regarding the 8.2 fibrosis score, did you have a "Fibroscan" (specialized ultrasound) that measures density/elasticity or was it a blood test called "Fibrosure"? A Fibroscan score of 8.2 doesn't indicate cirrhosis, but a Fibrosure result of .82 does. See if you can find out which test was performed. I included links to both tests that may ring a bell.

Since you're on Ribavirin, as Jill mentioned, that is likely the cause of your current symptoms. It can cause the nausea, itchiness (rash) and fatigue you're experiencing. Ribavirin side effects tend to hang around in one form or another throughout treatment. It causes anemia, which is responsible for the fatigue. Proper diet, rest and hydration will help to limit those SFX. Your doctor will keep a close eye on that during treatment. One other thing to remember is Ribavirin causes a sensitivity to the sun. Limit your time in the sun, wear good sunglasses when you do and use a sunscreen if you'll be exposed for any length of time. My scalp burned to a crisp because I failed to wear a hat! Just be cautious and keep these thoughts in mind and you'll be fine. 

http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html

http://www.hemophilia.co.il/documents/Fibrotest.pdf



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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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Yes taking Riba with the v pack. Nausae, headaches, itching, insomnia, weakness. They told me all the numbers, cirrhosis, can't remember the extent, only know was at the begining and not that bad, want to say liver status was 8.2 level.

I go in for my first blood test on the Oct 21st, will get a copy then.



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Hi Bob, it`s early days for you yet, hang on in there and it`s likely the initial side effects will ease off in a week or so.

Can you describe your side effects and we might be able to give your some tips to deal with them.  Also, are you taking ribavirin with your Vik Pak?  If so, I expect that is mostly the cause.

It would be very useful if you could write a few details in your Signature line, that would help a lot when we`re replying to you.  For example, your genotype, your latest liver status (level of fibrosis or cirrhosis), and your treatment details.  Thanks! 

Make sure you`re drinking enough water to keep yourself well hydrated, and take extra rest if you need to. 

Keep going, it will be worth it!



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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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Ok after the first 5 days, I think I have had every common side effect you can have, sure hope after a week or so the effects will lighten up.

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Yes they said would be a 12 week, after the first 5 days already feels like 12 weeks.

What was the post you had on here about a relaspe, Thanks Rob



-- Edited by streetbob7 on Tuesday 13th of October 2015 09:25:39 PM

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HI Bob, welcome! 

Thanks for introducing yourself, good to have you with us.  We`re always happy to party here! 

Please feel free to take a seat on the VP train, destination SVR... smile

http://hepcfriends.activeboard.com/t59659874/all-aboard-for-the-viekira-pak-treatment-train-enjoy-the-rid/

Best of luck, do keep in touch!  

 

 



-- Edited by Cinnamon Girl on Monday 12th of October 2015 01:16:38 PM

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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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Hi Bob,

I just finished 12 weeks of VP/Riba today.  The first couple weeks were an adjustment, but after that it really wasn't too bad.  And the stats of the results are so promising.  I'm glad you found this forum; we all know what it's like and are here to help you through it.  You'll do fine.  Welcome to the VP train. 

Penny 



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65;  Dx 1997 1a; VL 1.1m; TX naïve; SOT 7/20/15; 12 wks viek/riba 1200mg

09/14/15 draw: Undetected 8 wks into tx

10/12/15 draw: Undetected at EOT

01/05/16 draw: Undetected at E0T+12



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Hello Bob

Welcome to the forum from me as well, you have found a great place with people that can give insightful information during your treatment time and after .

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! 



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Welcome Bob!  A "Vikerian Warrior"    Join in!   Yes we are alive and well.  Pick any seat on the train.  You will do fine.  Ask away!



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60 yrs. Geno1b 2001. 9mil. VL. �Failed Post Riba/Peg tx. 2006 46 weeks. Diagnosed 1A 2015(?) F3 fibr. 225k VL. Vikera/Riba 12 weeks 3/20/2015. "Undetected" start to finish. Undetected 1yr post tx.



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 Hi Rob and welcome to the forum.

 Many of us have felt the same way but thanks to these new meds those gloomy days of little hope are history. Have you ever been treated for hep C before? While you are checking out the forum you may see some abbreviations you are not familiar with such as in member signatures. For more information on signatures and a link to definitions of abbreviations click here. There have been a lot of parties around here lately with so many members beating the Hep C dragon, and 1 more sounds even better. We're glad you found us and I wish you well on your VP treatment. smile



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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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Welcome Rob, rock on :)  Party time.   Glad to hear you're getting started.  Are you a 12 weeker?    Good luck. 



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.

Tig


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Hi Rob,

Welcome! Thanks for checking in and introducing yourself. VP is an excellent protocol and comes with high SVR rates. What are you, a 1A or B and how many weeks is your party going to last? Are you going to have Ribavirin as part of your protocol? That tends to cause more side effects if you have them, but they're manageable and we can give you some tips. Primarily, extreme hydration is the key to minimizing the sides. 3-4 liters of water per day is a good target. 

Others will be along with some tips and advice soon. You're among a good group and we all look forward to celebrating your SVR when it happens! 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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Was checking out replies in the forum. Just started my VP today, think will be well worth the side effects for the cure after carrying this in me for 46 years. Always figured I would have been dead before a cure came along.

So lets get this party started



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