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7510956 tn?1411671417

DETECTABLE AT 8 WEEKS ON S& O AND VERY BAD JOINT PAINS. OFF TREATMENT

Today I saw my Doc and Iam detectable after 8 weeks with bad joint pains. We discussed future treatments and he does not want me on Harvoni he prefers new meds coming in January from Abbie. I read about  Harvoni and I thought we that were on S& O and failed could go on Harvoni for 24 weeks with very good results. Need some feeback,thanks.




22 Responses
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Avatar universal
So sorry this has happened. Please try again after some rest and then make your decision
Helpful - 0
Avatar universal
Yep, it is chilly here in FL., but on a more positive thing.., we don't have the snow.., at least usually!  I've lived here for more than 50 yrs and there have been flurries a few times, but it is a rare fluke and they don't stick. Now, maybe in the far northern region up closer to GA state line..., I don't know because I don't live in that part of the state.  
Helpful - 0
Avatar universal
So sorry to hear this, guess the only positive takeaway is that now you know you can do this, I think before you were very reluctant. My doc told me so many things are looking great in trials, and I just hope that you know you can hang on for them...I didn't get rid of this until I was 60! I know that it will be much sooner for you!!!!
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Avatar universal
Enjoy your much needed break.
I have personal info that the Tarpon are hitting in the Keys within the last week.  Bring your coat as today in So Fla we are near the 40s.
Come back to us with exaggerated fishing story's and forget about Hep C for
awhile.  You deserve a fun filled adventure!
.....Kim
Helpful - 0
4806014 tn?1424501878
Sounds good Fred, let us know how you are doing. Hope you get to a peaceful ocean place and catch a big fish!
Helpful - 0
7510956 tn?1411671417
Hello Susan, you are a tough cookie, I hope and pray for you to get cured. I made appt with new hepatologist and secretary told me they are treating S&O non responders with 24 weeks of Harvoni.She said Sovaldi does not create resistance. The Gilead rep with be in his office on the 17 th of Nov and they added me to the list:) I took your suggestion, I will be in Key Largo tomm fishing and taking some time off. I will keep you all informed.  
Helpful - 0
7510956 tn?1411671417
Thanks again  to all for the positive support, I  feel much better today and tomm I  will be in the Florida Keys  doing some fishing and taking it easy, its good to know I am not alone. Sunru, i am geno 1a and in January of 2013 I was given the news I was F4. I have appt for Ct scan to check liver out, I will be making appt to see a Hepatologist for a second opinion and if I have to change Drs. I will.
Helpful - 0
4806014 tn?1424501878
Sorry you have to go through this. We all have to face it at one time or another. Nothing is ever for certain.  May I ask what genotype you are? Do you have cirrhosis? You know the Harvoni is already approved and I would get a second opinion about re-treatment from a Hepatologist. You would only have to see the Hep Dr. ONCE to get an expert opinion. If you have cirrhosis they would most likely recommend Harvonni for 24 weeks. If no cirrhosis then 12 weeks. I don't know, it just seems like your doctor is not making any sense and giving you the support you need. Why wait? Get yourself lined up to get whatever tx lined up as NOW seems to be the time to do this. It may take a few months to line things up anyway.  Take care and best wishes to get moving on this.

Helpful - 0
Avatar universal
My fingers are crossed for you, Susan. I pray this is YOUR time for that elusive SVR!
Helpful - 0
Avatar universal
Fred, I AM SO SORRY.  Believe me when I tell you that I KNOW how it feels.  It is so very discouraging when you've gone through one of these treatments and get your hopes up and put yourself into a positive mindset and then, get news like this.  When I was first diagnosed, I had geno 1A and 1B.  Somewhere along the way, during all the 11 treatments I did (even though I was still testing 'detected'), I lost or cleared of the 1B.  But, I still had 1A.  I was absolutely certain I would clear when I was in a trial for the Telaprevir (Incivek) and I didn't.  I had a huge viral load drop in the first week, but then rebounded up to higher viral load than when I started.  I was kicked out of the trial at week 5, based on my null response they called it, on my week 4 blood draw.   Each time that I got so long on my viral load like one time I treated for like 68 wks and my viral load had dropped from the millions down to like 1000 copies and then, had to stop treatment.  I went through such a crushing depression, swore I'd never do treatment again.  Each of my treatments included Interferon, too.  This last treatment #11, that I did this past summer (Sovaldi/Peg/Riba), so far, has been my first ever hearing 'undetected'.  Like suehula above, I'm VERY anxious about my 12 wk post viral load which will be drawn right before Christmas.  I'm just so sorry about your news. I want you to know to NOT give up.  There is a treatment out there that will work for your body and 'kill this dragon'.  I never thought I'd hear those words 'undetected' after all these crushing blows, and yet I finally heard them.  Don't give up.  Pamper yourself.  Allow a week of disappointment and then, stop that and do something that you enjoy. Like take a vacation, play in the snow, eat chocolate, whatever it is and try and forget about this for a few months. Then, when you're all recovered and you can look at other treatment options objectively, take a new fresh look at it.  I am not trying to preach, I've just been through it too many times..  Susan400
Helpful - 0
Avatar universal
I'm so sorry for your news. It is very disheartening. It makes sense to me, and I am not a doc, that once you show that sovaldi is not the drug for you, that it is wise to move on to a different drug or class of drugs. I treated with interferon based treatment every time a new one came out and I never even had a two log drop in viral load. I am geno 1a with cirrhosis and have had HCV since 1966. The Abbvie drugs cleared me in just a few weeks and I got my SVR in Oct 2013. I would not be afraid to listen to your doc and take his advice. I think the Abbvie drugs rock. Lots of good luck, Fred.
Helpful - 0
Avatar universal
Also just want to say, I'm so sorry for your latest news. Shake it off like you said. I know it's hard to keep on sometimes. It is meant for you to find the cure. You will. God has your back. We are here to support. Again I am sorry!
GoGG
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Avatar universal
Is this a done deal Fred? I really hate to see you stop. I've read of others who were not undetected until after 8 weeks and a lot of us are dealing with joint pain and aching and fatigue and nausea.
But if the decision is indeed made I hope you will find your cure with the next drugs. I sometimes think that if I do not make it with the S/O, I will go with Abbvie rather than Harvoni. Plus, I read today that Express Scripts may take Harvoni off its formulary and have people do Abbvie instead. The problem with Abbvie is that they're saying you have to take Interferon or Ribavirin with it.

I wish you the very best in your future treatment. Take care.
Helpful - 0
Avatar universal
I am very sorry to read that you couldn't go undetected early. But from what I have read, there is no stopping rule based on virus detection before end of treatment for solvaldi. For sure if you had continued you will be undetected and you may have chance of svr. Some people didn't clear at wk 8 but still they achieved Svr.
Also I don't know why your doctor should not try Harvoni for you since there in no resistance from solvaldi.
It seems to me like your doctor is trying to save money for the insurance company. I don't know any drug that is better than Gilead drugs now and in the near future.
You have to be your own advocate and ask your doctor these questions based on facts and scientific results.
Helpful - 0
6708370 tn?1471490210
It seems the drugs keep getting better - more effective with fewer sides so I know something is going to work for you in the near future

Right now, treat yourself to something that you really enjoy - a massage or a fishing trip?

You're just takin a little break at the moment

All the best

Helpful - 0
Avatar universal
I have been in your shoes when I had to stop the Victrelis combo treatment.  I was crushed and it was a bit of a recovery process.  I've now tried again with Sovaldi and am somewhat traumatized over the idea of getting my 12week post treatment labs.  

Hang in there and I do believe that the cure is close for all of us.  The journey is tough, but I try to remember that we are tougher!

I will keep you my thoughts and prayers.  Keep calm and your armor on!
Helpful - 0
10175413 tn?1427170251
Hello Fred. I'm so very sorry to hear you news. I can't imagine how disappointed you must feel. Don't get discouraged. There is another treatment for that WILL work for you so hang in there, keep the Faith, you are doing everything right. You take care and we all send hugs your way
Be Well
Deb
Helpful - 0
Avatar universal
Wow Fred
I know how upset you must be and Im so very sorry.  
Oyslio and Sovaldi were just not the best choice for you.  I do hope that you have faith in your Drs as they do have your future in their hands.  If your uncertain, a 2nd opinion is a wise decision.
There is a drug out there that is going to cure you.  Do truly believe within the next year this Virus will lose its grip, and no one will ever have to deal with the devastation it has caused.  Your day is soon, and that I have no doubt.
Only wish you the best.
.....Kim


Helpful - 0
7510956 tn?1411671417
Today for the first time in 40 + years  I felt time was running out, maybe my expecttions where too high. I will get second opinion since my Drs. nurse said he liked to use the cosmo trial meds and I think thats why he did not want to discuss Harvoni. Its possible my Hospital is not going to use Harvoni since they are a research Hospital. Anyway, thanks for the good words, tomm is a new day and I will dust off and step ut to the plate again:)  
Helpful - 0
Avatar universal
Don't know what I am doing wrong - as I was saying, ( don't forget  to exhale ) and do something special for your self to heal your soul so you can prepare for the next round in this battle.  SVR is so close - you don't want to get so discouraged that you give up the fight.  Your doctor has probably been reading the AbbVie trials and info, which is why he thinks that product will be best for you.  Ask him/her about it.

Again, I am so sorry, but don't give up.  Remember that children's story - this is the time to kick, frog, kick!  

You are in my prayers.  Pat
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Avatar universal
Fred:  Checking in to say, I, too am so sorry that your treatment failed and you had bad joint pain.  Many many of us have failed.  Dee is right, take a few deep breaths (don't forget to exhale
Helpful - 0
317787 tn?1473358451
Dear Fred, all I can say is how sorry I am.  I don't know what to say except that I have been in a similar position.
I did a 48 week tx back in 2008, got to UND and relapsed within 6 weeks.  I was heart broken.  I ended up losing my job because I couldn't tell them when I would recover.
There will be a tx to help you.  When I relapsed everyone said to rest, heal my body, mind, soul...get my plans together for the next time.

Again, I am so sorry, I can only imagine how disappointed you must be
Take care
Dee
Helpful - 0
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