Author Topic: OFF MY S &O TRETAMENT-IT STINKS. (Read 15531 times)

FRED220 · « **on:** October 30, 2014, 05:49:19 pm »

I am no longer on treatment, had very bad joint pains and still detectable at week 8. my Dr. does not want me on Harvoni, he asked me to wait until Feb next year to see what will be available then. It stinks and I am going to new doc.

BattleTheBeast · « **Reply #1 on:** October 30, 2014, 06:12:41 pm »

So so sorry Fred but maybe he has a valid concern and he wants to keep you alive. Did you get new bloodwork or did he just stop it because of the pain?

Just glad you are alive and going to trust that the doctor wants to keep you that way!

~Mel~

lporterrn · « **Reply #2 on:** October 30, 2014, 06:29:14 pm »

Fred - any explanation for why he wants you to wait? Just curious. Good for you for looking around.

Bucky · « **Reply #3 on:** October 30, 2014, 06:33:38 pm »

Quote from: FRED220 on October 30, 2014, 05:49:19 pm

I am no longer on treatment, had very bad joint pains and still detectable at week 8. my Dr. does not want me on Harvoni, he asked me to wait until Feb next year to see what will be available then. It stinks and I am going to new doc.

Hi Fred,
Your doctor must think that you aren't responding to Sovaldi. Could it have been the Olysio? I don't know how that would be determined but it was the Olysio that was the hang up about prescribing Harvoni to people who relapsed from S&O treatment. Thank goodness that is not the case now....
Bucky

FRED220 · « **Reply #4 on:** October 30, 2014, 07:39:01 pm »

He said maybe now I developed resistance? Since I took Sovaldi that is why not the Harvoni but wants me to wait for Abbie since its a different PIs. I did call Gilead 20 minutes ago and they said that I can treat with Harvoni but I would need a longer treatment period. I think some of these treatment centers have some deals with certain pharma companies or something. I asked the nurse if they had anyone on Harvoni or if they were going to start and she said they did not have the meds or anyone on them. My Dr. likes more the cosmos trials meds and that is maybe why he wants me to wait until February. I am going to a different center here in Miami that had Gilead rep at the center and get a second opinion. I really did not want to change Drs but I want to treat with what I feel good with and Harvoni sounds pretty good to me. I did feel disappointed but I am grateful that after 41 years with this virus I am still around and doing something about it. I hope my Insurance carrier approves the next med and I hope that it will be harvoni:)Thanks for the support.

Bucky · « **Reply #5 on:** October 30, 2014, 07:57:48 pm »

Quote from: FRED220 on October 30, 2014, 07:39:01 pm

He said maybe now I developed resistance? Since I took Sovaldi that is why not the Harvoni but wants me to wait for Abbie since its a different PIs. I did call Gilead 20 minutes ago and they said that I can treat with Harvoni but I would need a longer treatment period. I think some of these treatment centers have some deals with certain pharma companies or something. I asked the nurse if they had anyone on Harvoni or if they were going to start and she said they did not have the meds or anyone on them. My Dr. likes more the cosmos trials meds and that is maybe why he wants me to wait until February. I am going to a different center here in Miami that had Gilead rep at the center and get a second opinion. I really did not want to change Drs but I want to treat with what I feel good with and Harvoni sounds pretty good to me. I did feel disappointed but I am grateful that after 41 years with this virus I am still around and doing something about it. I hope my Insurance carrier approves the next med and I hope that it will be harvoni:)Thanks for the support.

At this time, people who fail S&O have to use Harvoni for 24 weeks. That alone would indicate that the Oylsio was the part of the treatment that fails. Something is troubling though. Sovaldi is not a PI, it is a Nucleotide Polymerase Inhibitor. Olysio is the Protease Inhibitor. I am glad that you are getting a second opinion.
Bucky

FRED220 · « **Reply #6 on:** October 30, 2014, 09:26:24 pm »

You know, its crazy but today for the first time in 40 + years I felt like time was running out, maybe my expectations where too high. Hey Bucky, what treatment are you on?

Bucky · « **Reply #7 on:** October 30, 2014, 10:27:00 pm »

Quote from: FRED220 on October 30, 2014, 09:26:24 pm

You know, its crazy but today for the first time in 40 + years I felt like time was running out, maybe my expectations where too high. Hey Bucky, what treatment are you on?

Fred,
I was treated with S&O and my next Drs appointment is 12/8 for my SVR12 blood work.
Was this you first time fighting the Dragon?
Bucky

FRED220 · « **Reply #8 on:** October 31, 2014, 04:34:38 pm »

Bucky, this was my first time and I really did not want to do S & O, I wanted to wait for something better since I am Q80k positive but its okay. I have made appt with new Hepatologist , secretary told me they are treating with Harvoni for 24 weeks for non responders to S & O. She said that Sovaldi does not create resistance. They are having a Gilead rep in his office on the 17 th of Nov to answer all patients questions and they added me to the list. I will keep you all informed of what went on. On a good note, tomm I will be in Key Largo for some snapper fishing and quiet time to relax:)

Bucky · « **Reply #9 on:** October 31, 2014, 05:00:01 pm »

Quote from: FRED220 on October 31, 2014, 04:34:38 pm

Bucky, this was my first time and I really did not want to do S & O, I wanted to wait for something better since I am Q80k positive but its okay. I have made appt with new Hepatologist , secretary told me they are treating with Harvoni for 24 weeks for non responders to S & O. She said that Sovaldi does not create resistance. They are having a Gilead rep in his office on the 17 th of Nov to answer all patients questions and they added me to the list. I will keep you all informed of what went on. On a good note, tomm I will be in Key Largo for some snapper fishing and quiet time to relax:)

FRED220,
Good, it sounds like you have the details sorted out.
On another note, damn you are going to Key Largo, I love the Keys! Several years ago I spent two weeks loafing all the way from the tip of Florida to Key West. We have snow in our forecast for tonight :>(
Bucky

FRED220 · « **Reply #10 on:** October 31, 2014, 06:42:57 pm »

Bucky, I live 60 miles from Key Largo and my wife and I go every other weekend since there is so much to do if you like the water. The temp here tomm is gonna be high 70s which is perfect weather for boating and crusing. Nothing like a fresh Key Largo mangrove snapper on the grill with veggies and dirty rice:) I was raised in Northlake ILLinois and at times I do miss the snow and frozen lakes but I think I will stay down here and sweat, have a great weekend!

Tess1971 · « **Reply #11 on:** October 31, 2014, 07:24:09 pm »

What is Q80K positive ??

Bucky · « **Reply #12 on:** October 31, 2014, 08:04:00 pm »

Quote from: Tess1971 on October 31, 2014, 07:24:09 pm

What is Q80K positive ??

Tess,
Q80K polymorphism is a naturally occurring variation in the HCV NS3/4A protease enzyme. Supposedly people prescribed Olysio are to be check for Q80K because it can lower the effectiveness of it. Some insurance required the screening before approving Olysio.
Honestly, I can't tell you if I was screened for it, but I can't find the test listed on my patient account from my hospital. Several people have posted that they weren't screened for it and several said they had been.
Bucky

Bucky · « **Reply #13 on:** October 31, 2014, 08:06:06 pm »

Quote from: Bucky on October 31, 2014, 08:04:00 pm

Quote from: Tess1971 on October 31, 2014, 07:24:09 pm
What is Q80K positive ??

Tess,
Q80K polymorphism is a naturally occurring variation in the HCV NS3/4A protease enzyme. Supposedly people prescribed Olysio are to be check for Q80K because it can lower the effectiveness of it. Some insurance required the screening before approving Olysio.
Honestly, I can't tell you if I was screened for it, but I can't find the test listed on my patient account from my hospital. Several people have posted that they weren't screened for it and several said they had been.
Bucky

Bucky · « **Reply #14 on:** October 31, 2014, 08:09:19 pm »

Excuse the dbl post & the blue box. It must be Halloween Devils!
Bucky

Tess1971 · « **Reply #15 on:** November 02, 2014, 11:06:23 pm »

Just started week 11 today - Yowsers !!

Bucky · « **Reply #16 on:** November 03, 2014, 03:25:47 pm »

Quote from: Tess1971 on October 31, 2014, 07:24:09 pm

What is Q80K positive ??

Tess,
Did you happen to read this? http://www.hepmag.com/articles/Olysio_Sovaldi_2501_25501.shtml?utm_source=mpnews&utm_medium=include&utm_campaign=treatment

The fourth paragraph of the article states that with S&O the Q80K polymorphism is not an issue. Now I know why I wasn't screened for it.
Bucky

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Author Topic: OFF MY S &O TRETAMENT-IT STINKS. (Read 15531 times)