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Tig · Admin

RE: Haven't been here for a while...

Scruffy · Guru

Way to go Angie

I started at the first post and read up. I had a feeling they just saw anti bodies and held my breath while reading. What a joy the way this post ended. /hugs.

wmlj1960 · Moderator

That's absolutely AWESOME Angie. I know you are soooo relieved. It's unfortunate that you had to be put through that mental anguish due to the inadequacy of your health care provider. But it happens every day and your case is a good example why it is so important for us, the patient, to educate our self about what's going on with our medical care. That's what was suggested to me when I first joined this forum and it has proven to be a valuable asset several times since then. I'm glad to see that your being educated about HCV proved to be valuable to you also. AWESOME!!!

Linuxter · Guru

Hi Angela,

Congrats! (I bet your're relieved)!

Nice to hear and exactly what I suspected as soon as you said your GP didn't test your Viral Load ... shame on them for not referring you to a specialist when they obviously didn't know how to test for relapse, not a confidence builder if you ask me ... finding a new and different GP comes to mind. (Although that's your choice, of course).

1848591?AWSAccessKeyId=1XXJBWHKN0QBQS6TGPG2&Expires=1455753600&Signature=snjzGiE9b7RDC0hX6GzbHo%2F1UsE%3D

Dave

-- Edited by Linuxter on Tuesday 9th of February 2016 09:13:33 AM

wendyo · Guru

Best thing I heard all day. So happy for you Angie. and

AngieV123 · Senior Member

Went back to my regular doc & told her I wanted a viral load test. ..she still insisted she was sure I had it because my test was reactive. Anyway, I got the viral load test done & got the call today that I am UNDETECTED! The dragon has left the building! I haven't had time to really let this fully sink in...this has been literally a life long battle and it's crazy for me to think it's really gone. I'd like to thank everyone who's helped me through this. This forum has been what held my mental health together throughout everything. It's a wonderful thing to be able to go to a place where people understand what you are going through.

Tig · Admin

Hi Angie,

That's absolutely outrageous! How in the world did that doctor not know you needed a viral load instead of an antibody test? That's almost inexcusable! I'd certainly let the GP know either way, if you haven't already. Do you have copies of your EOT blood work? Anything recent, like the liver profile? That would beneficial to get your hands on. Let us know when you get them.

I wish you the very best on your upcoming viral load. How great that will be if it comes back undetected! We'll be keeping our fingers crossed. Good luck....

JimmyK · Guru

Greetings,

All of us will forever carry the Anti-Body. We will never be able to donate Blood. That said, if no VL was taken, then my bet is your Doctor does not know enough about the Dragon.

Detected = Forever.

HCV not so much. ;)

JimmyK

Linuxter · Guru

Hi Angie,

Welcome back.

I'm pretty new here and don't know much about relapse but it sounds like your Primary Care Physician just doesn't know a lot about HCV. I'd definitely see the specialist who will give the right tests and know exactly what to do.

I wouldn't be surprised if you are still Undetected, I don't think there's any sense worrying at this point at all.

I'd consider switching Doctors, it's important to be able to trust them, sounds like you are not happy with how they are doing things. Communication is key with any Dr patient relationship ... sounds like there's a lack of that going on.

Just some thoughts.

Dave

-- Edited by Linuxter on Monday 25th of January 2016 08:36:47 PM

-- Edited by Linuxter on Monday 25th of January 2016 08:39:03 PM

AngieV123 · Senior Member

A little update..my GP who told me that I had relapsed did not do a viral load & clarified that my test came back "reactive". I read that reactive could just mean that I have had it before & not necessarily that I still have it. I go back to see her next week & I'm going to ask her to do an actual viral load blood test. My specialist appt got moved to Feb. 8th and I don't see the point in going unless I actually have the active virus again. Right now I'm in limbo..not knowing if I actually relapsed or not.I'm not sure why she didn't do a VL test knowing that I'd come up reactive regardless. I'm holding out hope that it's gone but I'm ready for tx if it's not. Hope all of you are doing well!!

Groupergetter · Guru

Hi Angie,

Harvoni was my 4th try and thank God it worked. The Harvoni has very high SVR rates even for those who have previous relapse(s). Hopefully you'll get approval and get started without much delay. Good luck

Gracie · Guru

I am very optimistic of being cured. Seems to be working for just about everybody which is great to see. There are others who have successfully treated after failing your previous treatment. The second drug mops us what the first drug misses. It's quite a miracle! plus it's been very tolerable to the point of not noticeable most of the time. Your biggest hurdle will be getting it. Insurance companies are not covering it unless your F3 or F4 depending on the company. There is another treatment Vic Pak that is easier to get. Hopefully your doctor will fight for you to get it.

AngieV123 · Senior Member

Thanks, Mike! I appreciate the info.

wmlj1960 · Moderator

Oh,

Other members can provide more information on this than me but no Angie, your previous treatment with Sovaldi does not affect whether you can treat again with it or not. smile

wmlj1960 · Moderator

Yes Harvoni has Sovaldi in it. It is 400mg Sovaldi (Sofosbuvir) and 90mg Ledipasvir.

To download a complete PDF file of information for it click HERE.

"Recommended Treatment Duration for HARVONI in Patients with CHC Genotype 1

Treatment-naïve with or without cirrhosis
12 weeks*
Treatment-experienced** without cirrhosis
12 weeks
Treatment-experienced** with cirrhosis
24 weeKs"

AngieV123 · Senior Member

How long do you take Harvoni for if you've failed previous tx? Does it have sovaldi in it?If so, does it matter that my previous triple tx with sovaldi didn't work? I think I read that it's two drugs in one pill..one of them being sovaldi but I could be wrong. Gracie, I hope Harvoni works it's magic & gives you the coveted SVR :)

Gracie · Guru

I'm on my third treatment round too Angie. Failed peg/RIBA and failed incevik/peg/RIBA so now on the harvoni train. Its not been too bad and success rates are in the 90's for even us failures!

AngieV123 · Senior Member

I hope it works for you! I'm guessing I will be on the same tx before long. Good to know the side effects are manageable.

wmlj1960 · Moderator

Hi Angie. Sorry you relapsed on your Sov/Riba/Peg Tx. I'm also geno 1a and relapsed after 24 weeks Sov/Riba last year. I am currently re-treating with 24 weeks Harvoni (no Ribavirin). This Harvoni is a breeze so far for me as far as minimal Sx's. I attribute most of my negative Sx's last time to Ribavirin. I just hope I see SVR this time. Part of the reason for me the HCV came back may have been due to other health issues interrupting my Sov/Riba treatment. Either way, I'm hopeful the results will be "a charm" for us both this time around.

AngieV123 · Senior Member

That's a plus. It was truly disappointing to hear that I failed another tx but I think I'm almost done feeling sorry for myself :). Maybe the 3rd time will be a charm.

Cinnamon Girl · Guru

Pretty much, yes. You won`t have to go through that again in your next tx, Angie, don`t worry.

I`m sure it will all become a lot clearer once you`ve seen your new liver specialist... new doctor, new start.

AngieV123 · Senior Member

Are the new treatments without interferon for all genotypes now?

AngieV123 · Senior Member

The 3 million viral load was the previous level before the last tx. Not sure what it is now. All that I was told today was that the virus was there and everything on my CBC was normal except my WBCs were high. They were pretty vague about details. I'll get a copy when I go back in a few weeks. Until then it's all a waiting game...Hoping to get to the liver specialist very soon.

Tig · Admin

Angie,

I see in your signature line that your viral load is 3 million. Is that the current level or your pre treatment value from the previous tx? Did they repeat all the tests, LFT's etc?

AngieV123 · Senior Member

My initial viral load count was detected at the start of treatment but it became undetected and stayed that way during the duration of treatment. I did 12 weeks of tx. I went to do my last viral load test before I moved (the 24 week test) & someone at the lab messed up & did a CBC instead. The paperwork was only for the hcv test so I'm not sure how that happened. I had already moved after that so I am unsure if I ever made it to SVR 24. It was likely already creeping up on me by then.

Cinnamon Girl · Guru

Hi Angie, I remember you well and I`m so sorry the treatment didn`t work for you, what a disappointment.

Looking back at your last post here in May 2014 you still had a `detected` viral load at EOT, did you have follow up viral load tests at 12 or 24 weeks post tx?

Good news about your ALT and AST levels, and I`m sure you`re right that your time on tx helped to give your liver a break from the virus. You do have options for your next treatment as Tig said, and the next time around should be the one for you.

Do keep us posted, we`ll be looking out for your news. Best of luck! smile

AngieV123 · Senior Member

Nice to hear from you guys again :). Thank you for the kind words.I moved to another state after tx so I just now got a doctor & found out that I relapsed. They are to call me with an appointment for a specialist soon. That's when I will know more about what's going on. I'm ready to do tx again as soon as they'll give it to me. The good news is that my ALT & AST were in normal range...which hasn't happened in a number of years. That makes me think I was able to do some healing in between.

-- Edited by AngieV123 on Tuesday 1st of September 2015 05:36:16 PM

-- Edited by AngieV123 on Tuesday 1st of September 2015 05:37:02 PM

Penelope PePod · Senior Member

Angie,

I'm so sorry that you've had such difficult news. I'm sure it's the last thing you expected to hear, and my heart goes out to you. But you fought your way through treatment before, and I know you'll be able to do it again when you're ready. The new treatment options are having a great success rate, and are overall quite easy to tolerate. We're all in your corner.

Penny

Tig · Admin

Hi Angie,

I'm surprised and shocked to hear of your relapse after achieving SVR. The odds of that are very low, about <1%. What, if anything, has your doctor told you about this? I'm sorry you're having to deal with this again. I know you believed all of that was behind you, as were we. I know telling you the chance for such a possibility is rare, means little at this point. What is important, is accepting the news and loading your weapons again, with some new Dragon ammo!

Has your doctor mentioned your next course of tx? The newest DAA's, like Harvoni are the obvious choices right now. You'll need 24 weeks I believe, and seems the logical choice. There should be a new protocol from Merck coming available sometime in the next year. Grazoprevir and Elbasvir, currently in the C Edge Phase 3 trial. It is a single pill multi GT protocol with high rates of success too. I think there will be a 16 week course for tx experienced, time will tell. So there will be several options available when you're ready to treat again.

I'm sure you'll hear from several new and old members alike. I remember you well and am glad you have checked in and shared your news with us. Like always, we're here to help you through this and willing to do whatever we can to provide support. Don't let this keep you down.

AngieV123 · Senior Member

Hey. Some of you may remember me. I took a treatment last summer and recently found out that I still have HCV...back to the drawing board for me. I took ribavarin/interferon/sovaldi. Anyone else fail this treatment? What are the options?

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