Hep C Discussion Forum

LJS911 · Member

RE: Just joined and wanted to say Hi

LJS911 · Member

Again thanks for your help.

LJS911 · Member

Hi Roey I agree with you 100% and if I wasn't already on a grant for the Harvoni thru his office, and when I do call to resolve an issue he calls me back the same day. He really is a caring compassionate doctor if he wasn't I would have dropped him after the first time I saw him I think part of the problem with most liver disease practices is the entry of the new line of meds that recently came on the market but the insurance issue has slowed things down but if they ever get the meds to all who need them it will be a few years until it levels out. Oh and I'm the husband but thank you unfortunately my wife just got back a positive biopsy on her breast, they caught it before it has left the duct but I am afraid and I hate to see her have to go through a lumpectomy and then they are talking radiation. They are doing a second MRI guided biopsy and then we will know more.

On one hand I am so happy to be finally dealing with my hep c in a way that seems miraculous and yet there is this dark cloud hanging over our heads in regard to my wife's breast cancer. Please keep her in your prayers.

Day 7 Harvoni and Ribovirin with little side effects so far.

Roey · Member

Welcome On the Harvoni train. Just to let you know I used to go the supposed guru of hep c. Dr. Ira Jacobson. He only accepted cash no insurance. Well that didn't last too long. I fortunately got in touch with a wonderful Dr. In my neighborhood. He accepts my insurance, which is medicaid. I feel that if a Dr. Is treating patients who have hep c they must be dedicated to their profession and be the best they can be. So, as far as I'm concerned they can be the head of this dept., or the director of that dept. I wouldn't change my Dr. Salvatore a regular hepatologist for anything in this entire world. Hope everything works out well for you and your hubby!

hepCFREEwanab · Veteran Member

LJS911 wrote:
Hep C X 20+ yrs, did 3 rounds of interferon x 17 yrs ago each for 6 months, one with ribrovirin 600 mg. TID
I was transfused and worked in Medical field several needle stixs.
Applied for a grant from Gilead Supportpath for Harvoni and it was granted Nov. 5 2014. My Dr. is David Berstein M.D. Director of Hepitology at North Shore, Long Island Jewish Medical Center in Nassau County, N.Y.
Started Harvoni January 28, 2015. Was notified that Dr. Bernstein made an error and in addition I needed to be on 600 Mg. Ribrovirin TID will start on Monday Febuary 2, 2015.

We had an appointment to see Dr. Bernstein, however since my husband's previous hepatologist was once again in our network we canceled the appointment. Can you tell me anything about Dr. Bernstein?

thanks,

Mena

Tig · Admin

Hi Larry,

Im so glad you got the Riba straightened out. You would've felt awful taking that much and would've run short temporarily when the supply didn't jive. Good idea to go in with all the facts in hand! Now on to your first undetected viral load! Let us know how you progress.

Thank you for your condolences on the Hawks. It appears I'm not the only one heartbroken! But as true fans do, we get back up and hope for next time. One game at a time!

Tig

LJS911 · Member

And sorry about the Seahawks : )

LJS911 · Member

I misunderstood the PA when she called , it is 600 mg. BID but I printed out the link and brought it with me just in case she wanted to put me on 600 mg. TID. She gave me a week pak of Ribaspheare 600mg but thank you for the headsup

Tig · Admin

Hi Larry,

Unfortunately my SEAHAWKS passed when they should've ran. They had that game won, but it ain't over til its over and they made a fatal error. I'll be moping around for a week now...

I haven't heard of a doctor making an medication error like that, but I suppose there shouldn't be any issues as a result. The Ribavirin dosage should be discussed with the doctor. It should be 600 bid. You'll have some side effects that you may not need to experience on a tid schedule. The pharmacy may catch it too. The information is readily available on the package insert and online. I have the Sovaldi monograph should you want it. Let us know how things progress!

Tig

mallani · Guru

Larry,

I'm confused. Harvoni is not FDA approved for the treatment of Genotype 2.

You claim it was a mistake by your doctor to get Harvoni instead of Sovaldi. In the USA, I understood Insurance and the Specialty Pharmacy controlled what drugs were issued, and Harvoni is more expensive than Sovaldi, particularly for 24 weeks. It seems a bit bizarre. Good luck anyway.

-- Edited by mallani on Monday 2nd of February 2015 07:46:40 AM

LJS911 · Member

Thanks for responding to my intro, yes you are right my dr screwed up as far as he Harvoni as opposed to the Solvaldi but realized it after the meds were shipped and felt that as long as the sofosubvir 400mg. was in the Harvoni it was less trouble then to have Gilead change. As far as the Ribro she told me over the phone on Friday afternoon, I will p/u samples until my script is filled on Monday so I will know for sure but I am Type 2 Stage 4 so 24 wks Sofosubvir 400 mgs. and I thought 600mg. Ribro TID but thank you I will verify, like I said somewhere it's all on you as the patient especially now.

LJS911 · Member

Thanks for the welcome and congratulations on your Seahawks they look great. Sorry if my story got a little mixed up in the telling. 17 years ago or so I was on interferon for 3 rounds two of them were clinical trails with Ribrovirin. I just started Harvoni through a grant from Gilead Supportpath on Wednesday of last week. On Friday my doctors PA called and told me that he also wants me on 600mgs. of Ribro 3xs a day. If I didn't stay on top of his office I would have never got the meds from Gilead, they dropped the ball so many times and now finally that I got the Harvoni originally I asked them if I needed the Ribro they said no and now the doctor finally gets a chance to review my chart and relizes that he never told his PA that I also need the ribro.

I understand with these miracle drugs coming out and insurance not wanting to pay for it any good Liver Disease center is being inundated with patients that want to be rid of this disease, so I advise anybody seeking treatment to stay on top of your own treatment and paperwork.

I have to admit I am a little disappointed that I have to add the Ribro to the Harvoni, I am on a pain med protocol which should help with the side effects but any advice would be appreciated. But don't get me wrong, I thank God for this break through and will gladly take the Ribro knowing the cure rate and what I went through with intron with no results to show for it.

Tig · Admin

Hey Larry,

Welcome to the forum! So glad you joined the group. We've got some exceptionally nice, helpful people here and you can expect a warm greeting from all!

Im wondering about your protocol as well. If you were (are) on Riba tid (1800 mg) per day and Interferon, it's no wonder you had to have transfusions. You probably had few blood cells left after that! That's a huge dose. We have a lot of great information on the forum and Mallani (Malcolm) is very schooled in this subject and can be a great help to you. We all value his opinions highly. I wish you all the best! If we can be any assistance at all, just let us know.

Tig

mallani · Guru

Hi Larry,

Check the Ribavirin dosage. It's supposed to be 1,200 mg/day for an average male. That's 600 mg bid, not tid.

I'm surprised you're on Harvoni and Riba. The AASLD guidance is for 16 weeks of Sovaldi/Riba for 16 weeks for Geno 2 with cirrhosis. Here's a link:

http://www.hepatitisc.uw.edu/pdf/treatment-infection/treatment-genotype-2/core-concept/all

LJS911 · Member

No unfortunately I am Type 2 Stage 4, recommendations are 24 weeks. I am a little apprehensive about having to go n the Ribrovirin. They made a mistake and when Gilead sent me the Harvoni instead of the Solvaldi the PA just assumed the Harvoni eliminated the need for the Ribrovirin DUH!. So when he finally read my chart and saw no Ribro he had the PA cal and I'll pick up some samples until my insurance gets the approval and fills the script. Any advice about the Ribro, it 600 mg. TID in addition to the Harvoni. Thank you for the welcome

Cinnamon Girl · Guru

Hi Larry, welcome to the forum!

Thanks for introducing yourself and congrats on getting your Harvoni through the Gilead Support Path, that`s good to hear.

You must be so pleased to be on this combo after your previous unsuccessful attempts and you should expect to do very well this time around. I`m sure you`ll be relieved to find how much easier this treatment will be in comparison! We`re seeing some excellent early results coming through from our members who are also on Harvoni and I`m sure you`ll be joining them very soon.

So will you be doing 12 weeks of treatment as you`re taking Ribavirin as well as Harvoni?

Feel free to join in, this is a very friendly and supportive group!

Best of luck! ~ Jill

LJS911 · Member

Hep C X 20+ yrs, did 3 rounds of interferon x 17 yrs ago each for 6 months, one with ribrovirin 600 mg. TID
I was transfused and worked in Medical field several needle stixs.
Applied for a grant from Gilead Supportpath for Harvoni and it was granted Nov. 5 2014. My Dr. is David Berstein M.D. Director of Hepitology at North Shore, Long Island Jewish Medical Center in Nassau County, N.Y.
Started Harvoni January 28, 2015. Was notified that Dr. Bernstein made an error and in addition I needed to be on 600 Mg. Ribrovirin TID will start on Monday Febuary 2, 2015.

Hep C Discussion Forum

Legal Disclaimer: