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Hep C genotype 4
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Hep C genotype 4

Hello, what is the latest drug treatments being used for genotype 4 and any recommendations on the best place to seek treatment in the NYC area. Thanks very much


Peggy
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Hi Peggy,
I'm not the most knowledgable about Geno 4 but I know someone that is but he is not around right now.  If you go to the search members feature and look up Bali05, you can read lots of what he has written in the past by looking at his posts on his profile.  He has been quite successful  in his own TX so you might get some good ideas
You may also want to look up Dr. Douglas Dieterich.  I know Bali has consulted with him and been pleased.  Dr. D. used to have a Q and A section here at Medhelp and he knows HCV very well. He even had to be treated for it himself years ago which I'm sure adds a lot to his compassion level. If you could get in to him, I hardly see how you could do better, but someone else may have some other ideas for you.  
Hope I helped somewhat,
Ev
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Hi Peggy,
I am also a Geno 4 and I hate to tell you but there isnt anything NEW availiable for us yet. Unfortunately there just isnt enough of us 4's in the US to be profitable for the drug companys to research. Bali definetiley knows his stuff on our type and I am sure he'll be posting soon about how he has conquered this virus. There are new drugs in trials right now but atleast a few years away. You still have SOC treatment which is around 60% sucsessful for us Geno 4's.Welcome to the forum.

Bob.
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Hi Peggy,
I am also Geno 4 and loacted in NYC.
Hepatologists that were recommended to me are:
Dr. Ira Jacobson , Dr. Douglas Dietrich , Dr. Hillel Tobias

I assume you are tx naive so I would try and do 2 things first:

1) Get an idea if  you have any fibrosis (Biopsy,FibroScan,FibroSure,Bloodwork)
2) Run the IL28b test

If you decide to tx right now I would add Alina (Nitazoxanide) to SOC.
You can google it  (Nitazoxanide genotype 4).

Do you know your geno 4 subtype ?

For example I am (hopefully was)  4 a,c.

It appears that 4a is easier to tx than geno 4s.

b
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Thank you all for your replies. I do not know my subtype yet, fibroscan did show some fibrosis. The gastro docs up here in upstate NY say they would treat me with the pega interferon ,rivarin and incivek but all have said there is experience with gentype 4. I have tried to get in touch with Dr Dietrich and Dr Talal at Wein Cornell- so far no replies. I will keep trying.
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should have said doctors up here have not had experience with g 4
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I truely doubt any insurance company will pay for Incivek for a Geno 4. There's no Clinical Data that it will even work on geno 4.
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"fibroscan did show some fibrosis"

FibroScan is most reliable to determine early stages or late stages of fibrosis.
Not very reliable in the mid stages.If you are in the mid or late stages on
FS but still want to wait you should do biopsy.

Who did your FibroScan ?

Did they recommend to treat now based on your FS results or can you wait ?

Anybody who tells you they will tx geno 4 with Incevik does not know what they are
talking about.

1) It did not improve SVR in a small geno4 study but has additional side effects
2) It is not FDA approved for geno4 and costs approx. $48K for 12wks off label use.
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Local Gastro doc did a fibrospect - scored a 43 - ultrasound did not show any masses etc. Dr recommends starting treatment with incivek - Thats why I'm looking to NYC for treatment -
Just left another appointment request at Dr Dieterich's office.
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Ultrasound can only show evidence of HCC or advanced cirrhosis.
Genotype 4 cirrhosis seems to develope smaller sized nodules
in comparison to geno 1 , I imagine it would be harder to see on ultrasound
especially if it is boderline.
I would only look at Fibrospect bloodmarker test together with other tests
never just on its own. I once did 3 of them within 6 mo. and they were all
different varying by as much as 2 stages.
Try and get to see Dr. Dietrich he will do a FibroScan.

Some things I would consider when  prepping for tx.
1) Check Vit D , Vit A and B12 levels
2) Make sure you are not insulin resistant or diabetic
3) Get yourself in good physical shape.
4) If you are overweight try and get a normal BMI before you start

Make sure you get a HARD copy of every lab result or procedure immediately
when it is available and keep them organized.Some even create their own spreadsheet
with all their bloodwork results. It is a long treatment with many tests
Once you decide which Hepatologist you like it is also a very good idea
to have a good relationship with a GP for support of possible side effects ect..
Also if you want to run additional tests the GP can help you.
Your personal GP will know your entire medical history whereas the nurse
at the hepatologist office will only focus on the standard tx issues.

Learn as much about HCV (4)  as you can and be your own advocate.

Good Drs will always appreciate an educated patient.

b
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Hi Bali, got results from blood work, Vit A and D ok, insulin came back a little over normal, does that mean I could be insulin resistent? Have an appt with Dr Dieterich this week. Thanks, Are you finished with tx?

Peggy
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Did you do a fasting insulin an blood sugar from same blood draw?
What are the numbers ? You can find a calculator somewhere online
and plug in those values just make sure it is the newer Homa2 and not
the older Homa1.

b
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Will get the numbers Monday - office is closed today
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Always get a hard copy of all your results
Yes , my tx is finished and I am currently in SVR countdown mode
while watching my blood count slowly return.

b
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Good for you
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a friend i work with had geno 4 and did victrelis in a trial and SVR....she did 48 weeks  plus she had the TT gene.....good luck
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Thank you
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Hi, I am also Geno 4. My doctor in Singapore is treating me with pegasy and riba. In my 14week now. Und since week 4. Keep in touch. God bless.
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Thank you, good luck to you in tx.
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I guess I am another here in the USA to add to the list of HCV-4.
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I am genotype 4 also, am on day 34 of Sovaldi, Pegusus, Ribavirin, for 12 weeks. We have the highest cure rate with Sovaldi, 96%! Are you getting treatment right now?
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I am waiting for my insurance to authorize the savaldi, and the pegusis. They will also have me on ribovirin so that will be 3 and I will be on them for three months.
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I live in Ohio and my Dr. told me he discussed me with other specialist in the Cleveland clinic and I am the only case here in Ohio that he has heard of. It really ***** to be Geno 4 I feel like the guinea pig for Ohio
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It used to really suck being a Geno 4, but with these new drugs it doesn't matter anymore. What ***** is that you can't wait a few months to be treated without interferon. What stage are you? If you can wait I certainly would. I'm a Geno 4 and treated with these new drugs in a trial and was cured. I was UD in 2 weeks and it has been over a year.Even if you still decide to treat now (which I think your crazy) you'll be taking Savaldi which makes your odds in the mid 90% range of being cured. Good luck with what ever you decide.

Bob
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Hi allwomyn1960, I am over half way through the 12 week triple treatment with Sovladi. I chose not to wait for an interferon-free treatment, as I am now almost 64, still healthy, had good liver levels, good ultrasound, and low viral load (192,000 in September 2013), he did not do a biopsy, but would have if I had chosen to wait. So while my doctor said I could chose to wait since there was no issues for me at the moment, I decided I did not want to wait, as I am healthy now, and who knows what my health will be a year or 2 down the line. Plus I have had this thing, unknown to me for 30+ years. So for me, and everyone is different and have different issues, the treatment has not been bad at all, and I am hopeful to be cured of this virus, and hope that is the end of it. Take care and let me know how you are doing.
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I also have Geno 4. I just started treatment last Tuesday. I am on Sovaldi once a day, Pegasys injections once a week. and ribovirin twice a day. This is week 1 for me and so far I am doing ok.
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Well I decided to go for the treatment. Pegasys actually has help to afford the drug if you have insurance. It is called co-pay help.  So as of this Tuesday coming, I will be on my treatment for one week. I am using sovaldi, pegasys, and Riboviron. It is the 12 week regiment so I am very hopeful.
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I started treatment last Tuesday, almost 1 week for me.
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Hi I am now on week 10, 19 days to go. Haven't gotten my viral load results for week 8, am anxious to know. What dose ribavirin are you taking? Remember to drink plenty of water, it will help with the side effects. And keep eating, even if you are not hungry. 6 small meals a day seems to work for me. Fruit, nuts, cheese are great to keep around. Rest after your shot day, I do most of my errands on day 6 and 7 of my week (after shot). Feel free to ask me any questions, good luck!
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Well good for you!! You'll no doubt beat this that Sovaldi on it's own is powerful stuff. Hope your treatment is smooth sailing as far as sides. Take care and report results.

Bob
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I had to be taken off of the treatment. It was shutting my body down and no matter what I did it was not good for me. I am waiting for the next new medication to come out and pray I do better with it. I am so glad your doing good and I want to hear your results. God Bless
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Hi allwomyn1906, So sorry to hear of your difficulties, but you are right, there are new meds down the line. Meanwhile take care of yourself, and recover of the Tx. I am almost 6 weeks post Tx (as of tomorrow), and was UND at 4 weeks pst EOT. Will be doing a 3 month and 6 month viral load test also. Was feeling real good after a month, minor skin issues, and my hair is falling out now, but should grow back later (like chemo). Please let me know how you are doing in the future, and I will let you know my status as time goes by.
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