On OFF LABEL Sovaldi and Olysio!

[GrammyA]

In my 3rd week now and feeling really strong.  Without the nasty Interferon and Ribavarin this time - I have had minimal side effects and I am so very grateful!  My 2 week labs came in today and ALL of them are in normal range... including AST and ALT.  Second month of the meds have been ordered and are now on their way so stay tuned for more updates as we knock out these 12 weeks of treatment.  I truly believe this 3rd attempt to SVR will be the final one as it will be the cure I have needed using these 2 drugs!
I will keep you all posted.
Hugs and God Bless!

[mike716]

Thanks!

[Optimist3]

Mike,
Try calling this number...they are the best in NYC better than LI
212-241-0034 - liver desease program at Mount Sinai in NYC! They should be able to help.
Good luck and god bless you!
Let me know how it goes...

[mike716]

I posted this message to another thread, but since I don't know who if anyone is still reading these, I'm posting it here, too.

This is just an update on my situation, for those who have been following my seven years of tribulations with hepC and my current plight in New York.

I finally found a hep MD in NY who was willing to prescribe Sovaldi + Olysio for me. I had already spoken to the Gilead and Janssen patient assistance programs, both of whom told me I should be eligible (no insurance, advanced fibrosis, etc.) and sent me applications. However, the MD has a specialty pharmacy he works with and is letting them handle the contacts with the assistance programs. I don't know if this is the best way to handle it, but it's what I've got.

So, I'm waiting to hear from them about whether I am approved for asistance. If I'm not, I don't think I will get any more help from either the MD or his specialty pharmacy as they don't seem very interested in spending time with this.

Aside from that, none of the five trial study sites I contacted in February has yet come through with a trial for me. The two who said they would have trials in June have backed off, saying the trials aren't for me. I still have some hopes, though, as they all say there will be new trials starting up soon. Also, tomorrow I have an interview with a hep MD at a big hospital on Long Island that does trials but which requires you to become a patient there first.

So, all things considered, I'm making some kind of progress. I don't have the meds yet, but I feel I know more about how the system works back here in the U.S.

If anyone reads this who got Sovaldi + Olysio through the patient assistance programs, it would be a big help to me if you could tell me how things went for you, especially whether you had to write letters and fight for the meds after the original submissions.

Also, does anyone know if you can re-submit an application for patient assistance once it has been turned down? I'm thinking I might try another MD if things don't work out with the present one and his specialty pharmacy.

Good luck to everyone who's in therapy, and congrats to all who have been through it and cleared the virus.

Cheers!

Mike

[Texino]

Started Sovaldi/Olysio 10 days ago. I'm also taking Plaqumine (for Lupus). I have noticed fatigue/ insomnia, indigestion and muscle aches. All of these side effects (?) have been minimal. I will gladly put up with these minor discomforts to be hep-c free! My doc told me to take them at the same time or  take one in the morning, one in the evening, whatever works best for me.

[candyce1953]

That's great to hear, it will be over before you know it

No grapefruit juice
And no sun

Good luck!!!
Xo

[Optimist3]

Resumed on Saturday. everything went fine this time around. just headaches...but I get those anyway. thank you for your advise and support.
I take both pills after dinner on a full stomach.....
Gives more time to recuperate and get ready for work next morning.
Good luck to everyone!