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Post Info TOPIC: New Here
mallani


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RE: New Here
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Hi Tim,

If you're only taking one Ribavirin twice a day, I assume it is the pre-packaged Ribasphere Ribapack 1200, and you're taking the Riba 600mg twice daily. Most of us were on Rebetol or Copegus and took 3 x 200mg twice daily.

If your GI has been treating HepC for 17 years, he would have only have used Interferon and Ribavirin.  Victrelis and Incivek have only been available since 2011. Shame he didn't say why he was against Victrelis- it's a much gentler drug with slightly better SVR results.  If he has never heard of twice daily dosing for Incivek, he's obviously not up-to-date.  At your age, with no liver fibrosis on biopsy, there is no way I'd be getting Rx now, particularly with a drug like Incivek which is well known for it's toxic effects on the colon and rectum. There is also the question of your weird VL fluctuation from 6m to 40k.

Obviously your ALT was ~600 and your AST was ~300. Don't worry about the GGT. Those levels indicate some inflammation, but do you have any recent levels?  If your most recent VL was only 40k, I suspect the ALT/AST may now be normal.

HepC can affect joints, but if you've only had it for 3-4 years this is unlikely.  Also, if you continue Rx, you should not be on immunosuppressants.

Sorry to be longwinded, and this is only my opinion.  Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Tnate


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mallani wrote:

Hi Tim,

It's difficult to give advice without knowing some basic facts. Could you tell us your age, how long you have had HCV and how your doctor decided you had no liver fibrosis?  Your LFT results, particularly the liver enzymes (AST, ALT and GGT) would also be useful. The fluctuation in VL is not normal, and exercise would not have any bearing on it.  Triple Rx should only be used by an experienced Hepatologist.  You should ask your GI doctor whether he has experience using triple. Read the following link and do some research on Incivek and Victrelis before you discuss Rx.

http://hcvadvocate.blogspot.ca/2013/10/fda-hepatitis-update-changes-to-incivek.html

If you're young, have no liver damage and is your VL is really as low as 40K, you can afford to wait for a treatment that won't upset your IBD. Cheers.

 I probably contracted the hep c about 3 or 4 years ago.  Just diagnosed this year.  I forget which LFTs were what I'm going to grab the blood work and post that here in a minute but I know 1 was above 600 and the other one was half that or something.  Those were the AST/ALT.  I don't ever remember seeing a GGT.

I saw the GI today and he is totally agaisnt the victrelis.  I probably should have done this through a hepatologist...  They diagnosed no fibrosis through a liver biopsy. I'm 29 years old.  And apparently this guy has been treating hep c for 17 years.  He had never heard of using incevik x 2 a day either... Then I tried to explain to him my ribraviran was only 2 pills.  1 in the morning and 1 at night and he tried to argue with me then I said I have the pack in the car if you want me to go get it.  Had to show him and everything.

I have had bad joint problems which the colitis can cause, you guys think the hep c is contributing to it though?

Thanks for all the advice... trying to get the therapy over asap so I can get on more aggressive immunosupressive therapy for my joints.  Just saw a rheumatologist today and he wants to start treatment now instead of wait till I'm done with the hep c treatment thank god.  He's just waiting for a call back from my main GI hopefully he'll be cool with it.

Going to try my best with the incivek... I'm shooting for 6 months....



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JIme


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Hey Tim Welcome!!!!!!

You have to take fat with every does of Incivek. There are no exceptions if you want the stuff to work.

Here is what my Dr gave me for people on triple therapy.

1.   Take Pegasys the same time every week.
2.   Take Incivek and Ribavirin with food containing some fat.  (20 grams of fat at least)
3.   Take Aleive of Tylenol every 12 hrs as needed if flu like symtoms become uncomfortable.
4.   Take Omega-3 fish oil 3000mg (900mg-1000mg. EFA)
5.   Take Vitamin D 2000 IU per day
6.   Take multi-vitamin without iron
7.   Take Lecithin 1200mg per day
8.   Do not take any herbs or minerals while on treatment.
9.   Eat a diet high in protein and complex carbohydrates. Chicken, fish, eggs, low fat cheese, fruits, vegetables, whole wheat bread, and brown rice are all good examples.
10. Drink 3-4 lts of water or low sugar de-caf drinks.
11. No alcohol....hahahaha
12. Aerobic exercise and light strength training 3 times per week.
13. Do blood work on time and keep scheduled appointments.

Good luck Tim! You can do this!!!!!



__________________

jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
mallani


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Hi Tim,

It's difficult to give advice without knowing some basic facts. Could you tell us your age, how long you have had HCV and how your doctor decided you had no liver fibrosis?  Your LFT results, particularly the liver enzymes (AST, ALT and GGT) would also be useful. The fluctuation in VL is not normal, and exercise would not have any bearing on it.  Triple Rx should only be used by an experienced Hepatologist.  You should ask your GI doctor whether he has experience using triple. Read the following link and do some research on Incivek and Victrelis before you discuss Rx.

http://hcvadvocate.blogspot.ca/2013/10/fda-hepatitis-update-changes-to-incivek.html

If you're young, have no liver damage and is your VL is really as low as 40K, you can afford to wait for a treatment that won't upset your IBD. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Tnate


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Thank you guys so much for the replies!  Just the info I was looking for.  I called my doctor this morning and he is having me come in tomorrow cause I told the nurse how bad it was.  I had a complete accident yesterday and everything.  Couldn't sit, couldn't move... was in extreme pain.  Told them if it was that bad again today after I ate I'd have to go to the hospital.  Probably should have went last night...

Anyway thank god about Victerlis though... I am going to suggest that to him, hopefully he won't have a problem switching.  Sounds like you guys know more than the doctor!  This guy is just a general GI though... and my normal GI is 4 hours away so we are having this guy take care of the hep C.  Really hope he goes along with this other med so I don't have to call my main guy.  Sounds like the Incevik can be contra-indicated in IBD.

Anyway my normal GI is waiting to put me on some better meds for my IBD but he wanted to get rid of this hep c first... and he won't put me on them till we get this taken care of.  The new guy didn't want to treat me at all... he wanted me to wait for the new stuff but my other guy had to explain the situation and finally agreed. 

This was partly due to that last viral load being so low/no fibrosis I guess (but doesn't make sense in my situation like I was saying).  But yea.. first viral load was 6 million+ the look on my normal GIs face was funny when he told me.  Cause I am having a lot of extra-intestinal stuff with my colitis and he thinks some of it might be due to the hep c.  But anyway next time they had me do blood work and checked for the geno type it was down to 40k.  I suspect the reason why there was a major difference is because the first time I did the blood work I was not working out at all but when I did that 2nd one I was working out like crazy for months but you guys may know better than I.  Seemed like such a huge difference to me too.  6 million is pretty high right?



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JoAnneh


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I am a veteran of triple therapy w Invicek!
Received SVR last month.
question 1:
I was told if I wanted Invicek to work
I had to eat the fat grams. I would drink 
Olive oil in my milk to get the fat.
Since I committed to treatment 
I committed to following prescribed directions.
If I failed to achieve SVR I would know
I followed the rules.
It works w fat! It's a must.



-- Edited by JoAnneh on Thursday 14th of November 2013 04:08:46 AM



-- Edited by JoAnneh on Thursday 14th of November 2013 12:49:59 PM



-- Edited by JoAnneh on Thursday 14th of November 2013 12:55:55 PM

__________________

JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
Scruffy


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  Try not to miss the fat. The Incivek works with it. I was told it goes and stays in your liver longer with the fat. The fat also helps the "keyster" problem. For the back door I wiped with huggies baby wipes untill spotless and then coated the area with desitin.<--(spelled wrong). Also I used some over the counter med to keep my stools semi firm as runny bm's just make it worse. I had the start of a rash, got a worse one from the riba. I put gold bond on it before I was tempted to scratch. Scratching makes it run wild. Search here for what ppl ate to get there fat. Mornings I ate jimmy deans sausage biscuits early dinner then little debbie snacks and 1 cup of ice cream at night. After 12 weeks I can't look at any of that stuff it was worth it though. After I finished the incivek 2 weeks ago  if it wasn't for the anemia I would have to say I have little to no sides. Just a little advice if you stay on the incivek.

Good luck with your tx.



-- Edited by Scruffy on Wednesday 13th of November 2013 09:26:24 PM



-- Edited by Scruffy on Wednesday 13th of November 2013 09:50:06 PM

__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Biggyb


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I agree 100% with Malcolm, Victrelis is the way to go..



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
mallani


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Hi and welcome Tim.

I'm rather confused about your 'LFT range'. I assume you mean your ALT levels. Also, there is an enormous difference between a Viral Load of 6million and 20 or 40K. Could you check that? 

Re your question about fat intake with Incivek.  If you don't eat the prescribed 20 gm of fat, you will get markedly reduced absorption of the drug, with a risk of compromising your treatment. It will also worsen any ano-rectal irritation. I find it hard to comprehend why a Hepatologist would put you on Incivek, when you already had ano-rectal issues. You should be on Victrelis, and it's not too late to change. Incivek can be taken twice daily, 12 hours apart. Your doctor should know this as it has been approved by the FDA.

Basicly, if you can't take food/fat with Incivek with every dose, I fear that you're wasting your time. I would ask my doc to change to Victrelis immediately. Up to you. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Tnate


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Hi all,

I am new here.  Nice to have a great resource like this.  I have read over some of the posts and other people's experiences - It's nice to know I'm not the only one with this.

 

I had a few questions for the vets/anyone with experience Incivek.  I just started the triple therapy and the interferon was brutal for my first shot but the 2nd one wasn't too bad.  Most of my problems have been with the Incivek.  I try to get the fat in when I eat but it is not practical for me to eat every time I have to take it.  I know what most people are going to think/say and that is just get the fat in with it but I have other diseases that require me to follow a strict diet and I just cannot get the meal in sometimes... this is a reality and not something I can change immediately.  I am trying to structure my life so I can but right now its not practical.. probably for a week or 2 I will probably miss the fat at least once or twice a day..

 

So onto my questions...

1)Will incivek still work if I don't get the fat?  Medically... will it still work?  I can't imagine it becoming totally worthless just cause of the fat.

2)Are there any oral medications that can stop the burning/rash - In a preventive fashion, rather than a healitive one (ie different from a steroid or lidocaine cream cause I already have these). The other thing... I won't take oral steroids..

I have proctitis and the incivek is really making it flare it bad.  I have the worst rash inside and out.  My colitis meds are helping with the rash but god its bad.

The other thing is is it seems even when I do get my fat in... got it in everytime for like 5+ days and my rash didn't heal or anything...

Little background- LFT ranging from like 600-700 I think... as low as like 100 I think

1st viral load 6 million +, 2 other viral loads - one at 40k and one at 20k I think.  This was all before any treatment.  I get my first 2 week viral load check in less than a week.  No fibrosis  Edit: Genotype 1a

Thanks for the nice forum! Look forward to hearing back from you guys!



-- Edited by Tnate on Wednesday 13th of November 2013 12:59:38 AM



-- Edited by Tnate on Wednesday 13th of November 2013 01:07:20 AM

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