Hep C Discussion Forum

Gator Man · Senior Member

RE: Would those taking off-label Sovaldi/Olysio with or without Riba mind posting here?

Fireman Rob · Senior Member

Hi Pierre,

Good to hear you're doing so well! I'm almost to the six month post tx point myself and can relate to where you're at. Keep in touch and let us know how your liver is progressing.

Great News & Happy Times!

-Rob

Tig · Admin

Hi Pierre,

Thanks for the nice post! I'm so happy to hear your good news and especially knowing you have firmly achieved your SVR. I'm sure you're thrilled with the new lease on life and knowing that your liver is doing a happy dance! I wish you all the best and look forward to hearing all the positive news next year!! Big WOOT Brother!! Good luck....

Tig

pierre · Member

Eight months post-treatment now still SVR & MRI my doctor insisted on came out clean too will wait another year & do a fibroscan test to see if/how much the liver has been able to remake itself. Feeling active & in good shape: much work, much traveling the clouds have lifted. Thank'yous are also due to all you guys & gals on the forum who have always been encouraging & helpful. Keep truckin'

Pierre

David F · Member

Thanks all. Still hasn't sunk in yet. Very grateful to all of dedicated researchers and scientists who made this a real possibility for us all. So thank you Janssen and Gilead hope to be cruise'n A1A in my Chevelle when I'm 80.

Cinnamon Girl · Guru

David F wrote:
12 weeks post treatment Sovaldi/Olysio only. Undetected.So I guess I'm cured. Cool.

Congratulations on SVR, David, that`s fantastic news! biggrin

maddie · Senior Member

I am glad to hear that you are feeling so well, Bob. It is a great development after all this time. Keep the good news coming!

darkstar · Senior Member

Wanted to provide what for me (hopefully others) is an interesting update. Over the last few years, my conditioning and strength decreased. Although I was better than I was prior to starting sovaldi/olysio, my workout capacity was still low. My ability to train and get stronger was limited. Much of it I attributed to increasing years more than inflammation/virus/cirrhosis. Today, 10 weeks into harmony and 2+ weeks into riba my ability to train is back. I am not only up to a hard hour on the elliptical but I can lift again and I am getting strength back. Very encouraging!!

Matt Chris · Guru

Hello David

That best fantastic news a person can get, congrats and WTTROYL

matt

maddie · Senior Member

David F wrote:
12 weeks post treatment Sovaldi/Olysio only. Undetected.So I guess I'm cured. Cool.

Fantastic news David! biggrin

sandyw · Newbie

Hi- I am taking Sovaldi (sofobuvir) and Daklinza (daclatasvir). On my second week and going very well. No side effects.

Groupergetter · Guru

Congrats David, many here are hoping to join you. SVR! biggrin

Gator Man · Senior Member

Way to go, David-SVR indeed! I would concur with Rob that you are cured! Congratulations and enjoy your new Hep C free life.

Fireman Rob · Senior Member

Awesome News, David!

Yes, everyone that reaches SVR 12 goes on to reach SVR 24, and sofourth with S/O. I haven't heard of anyone relapsing after this new standard for "cured" after this combo- congratulations!

A phenomenal feeling indeed...

-Rob

Tig · Admin

Hi David,

You have indeed achieved SVR!!! Congratulations on your excellent news! Enjoy your new found Hep free life biggrin WOOT!!

Tig

David F · Member

12 weeks post treatment Sovaldi/Olysio only. Undetected.So I guess I'm cured. Cool.

RudiRoo · Senior Member

Thanks Mallani! You are very kind and much appreciated!

mallani · Guru

Hi Rudi,

With a normal potassium, don't worry about a slightly raised CO2. Perhaps you munched an antacid.

The BUN is fine, and I also wouldn't worry about the bilirubin. Have fun. Cheers.

RudiRoo · Senior Member

Of course I get my 6 week blood tests on Friday afternoon when all the docs are gone.

Can anyone help me understand why my CO2 is high and BUN is low? I can't find anything indicating this is Sovaldi/Olysio related. Also, I realize my bilirubin is only slightly over the legal limit but does anyone know the limit that would cause a halt to treatment? I'm about to go to the states for three weeks over Christmas and was hoping to skip labs while there.

PS. Check out those sexy ALT/AST #'s. Yeah!

labs 12.jpg

-- Edited by RudiRoo on Friday 12th of December 2014 09:47:40 PM

-- Edited by RudiRoo on Friday 12th of December 2014 09:50:21 PM

RudiRoo · Senior Member

Fireman Rob wrote:
Rudi,
I only did a VL test at EOT and will do one at 12 weeks and 24 weeks post tx. During tx I did a CBC and a CMP at 2 weeks, 4 weeks, 8 weeks, and 12 weeks. Many docs seems to still be establishing guidelines for these new meds but personally it doesn't seem to matter when you become UND on this combo. It looks like you're on the right track.
-Rob

Thanks Rob! Fingers crossed for you!

Groupergetter · Guru

Congratulations Tom, the 4 week hurdle is a huge one. smile UND is good biggrin

Fireman Rob · Senior Member

Rudi,

I only did a VL test at EOT and will do one at 12 weeks and 24 weeks post tx. During tx I did a CBC and a CMP at 2 weeks, 4 weeks, 8 weeks, and 12 weeks. Many docs seems to still be establishing guidelines for these new meds but personally it doesn't seem to matter when you become UND on this combo. It looks like you're on the right track.

-Rob

RudiRoo · Senior Member

Congratulations Tom! So exciting. I hope to join you soon!

I have a question about labs. I'm on week two of S/O and wondering if my doctor is giving me the right lab tests.

He gave me one order to have a liver panel and CBC after one week, no other labs through treatment, and then an order for viral load after 12 weeks of TX.

I asked for weekly liver panels and he gave me the order, but I'm not sure that's all I should be doing. Is there a recommendation for what labs should be done during treatment or is it just whatever your doctor thinks is necessary?

As I don't have insurance, I asked to only do my viral load at EOT and 12 weeks after EOT (it's a spendy test)

Does anybody know this?

Tig · Admin

Hey Tom,

+LIKE that kind of news!!! The EOT+4 results are a milestone and are a sign of great things to come. Congratulations!! Now on to rest and recovery, WOOT!!

Good luck, Tig

Cinnamon Girl · Guru

Great news, Tom, congratulations!!

So pleased for you, and you`ve made a very good point too, not all bad days are necessarily tx or HCV related!

Onwards and upwards to SVR, and keep us posted! smile

Matt Chris · Guru

Hey Hey Tom

That news just made my day, the four weeks EOT hurdle is the highest and most important one to make. From here its all down hill, think positive, eat healthy and say these words.

"When I used to have Hep-C"

Its such a pleasant saying.

matt

pl1952 · Senior Member

Awesome news Tom! Way to go!

TomF · Member

I just got my EOT + 4 week results. Undetected!

I have felt very good on most days, but on other days I have symptoms that really made me wonder if I was relapsing. Huge sigh of relief.

I guess it is important to remember that people with HCV can still catch a cold -- not all symptoms are HCV related. biggrin

skewedButNotBroken · Senior Member

Isiscat2011 wrote:

Did everything check out ok with the cardiologist, Skewed?

--I'm still having heart flutters, but the stress test and EKG were OK. However, I wore a 7 day take-home monitor--not the old holter type with dangling wires, but a small monitor about the size of a wrist watch with really strong adhesive it was called ZIO xt (I believe) . After 7 days (which was Friday), I removed it and mailed it to the ZIO company. They are supposed to interpret the results and send them to my cardiologist. I'll let everyone know when I find something out.

-- Edited by skewedButNotBroken on Saturday 11th of October 2014 11:58:16 PM

Peter M · Veteran Member

Good news Pericles! Double SVR!!!

maddie · Senior Member

Congrats, Pericles...sigh of relief, I'm sure.

Fireman Rob · Senior Member

Outstanding News!

I'm so glad to see that out suspicions were correct. Congrats! Enjoy the rest of your life!

-Rob

Tig · Admin

Yeah!! We all share a collective sigh of relief Pericles! Now we can also provide you with a group congratulations as well and wish you endless good luck!!!! biggrin

Best, Tig

Pericles · Member

Got the results of the repeat VL test: "Not Detected." Doctor was right that the "<15 Detected" was a false positive. Makes sense given the low AST/ALT levels. That means I am SVR+15.

Wary of saying "I am cured," but I think I can safely say it now. What a relief.

Given that I am early cirrhotic (stage 3-4), I still have to be careful.

Thanks so much for the support. Best wishes to those still fighting.

Peter M · Veteran Member

The waiting is indeed very difficult. And it must be really hard, Pericles, with a false positive thrown in. Your AST and ALT looking so good and are good signs!

I also use my liver function tests as a sign of whether the virus is back when I am waiting for a viral load test result. The LFT always comes back a few days before the VL.

I'm in the process right now of waiting for my EOT +12 VL to come in and it's nail biting time! My LFT had my AST and my ALT in the normal range (AST 25 and ALT 31) so that helps...but the gold standard is the VL. I should know this week.

Anyway..I'm looking forward to seeing you post in the SVR or Relapse thread a solid SVR!

Fireman Rob · Senior Member

Truer words have never been spoken. This waiting is extremely difficult, Tig. In fact, I've been obsessing about getting a CMP just to see if my AST/ALT values are still in check. I have no VL test scheduled until Nov. 24 and it's driving me crazy as some days I feel better than others. I guess that's normal though.

I can only imagine how Perciles is feeling with that wildcard thrown in there. Hang in there Perciles.

-Rob

Tig · Admin

Your AST/ALT levels are excellent and indicative of nothing serious at all. I gather from your doctors message that he feels the detected results are a false positive. With that in mind we hope he's right and have to wait for your tests to come back. Isn't all this waiting fun? I think it makes this entire process harder than it already is! Hang in there!

Tig

Fireman Rob · Senior Member

Pericles,

With AST/ALT values like that, you should be in excellent shape! I wouldn't worry. Congrats on SVR 12!

-Rob

Pericles · Member

Thanks for your replies, Rob and Tig.

Rob - Yes, and the results were fine: AST =19; ALT=13.

Tig - I specifically asked my doc (by email) whether the "<15 Detected" result at 14 weeks post EOT means I have relapsed after he had told me I was cured based on Not Detected at 11.5 weeks post EOT, and he replied: "You are still cured. We can repeat it this week. The FDA still considers this cured. It is almost certainly a false +. HCV doesn't come back at those levels."

That email exchange was yesterday morning. I went in for the repeat test yesterday afternoon. I will know the results this week. I'll post what happens, either way.

Thanks for the good wishes.

Fireman Rob · Senior Member

Hi Pericles,

That <15 detected is strange at this point in the game. Did you do a CMP test to see what your AST/ALT is? Let us know what you find out. Good Luck!

-Rob

Tig · Admin

Hi Pericles,

Im sorry you're having to deal with this. You have presented us with a truly unusual set of circumstances. First, I had my EOT+24 done a bit early and I thought the same thing about being tested early. Now they consider EOT+12 as the determining date.. I guess you can consider us anal about testing protocols, but I understand your attention to detail. I'm glad you've gone ahead and had the test repeated. That will rule out a false positive. I would be concerned as well, because detected is detected, no other way to look at it. I will look for that FDA guideline that states <15 Detected is considered cured, but I believe it will be difficult to find...if you know what I mean. To date the only thing I've read is a sustained undetectable viral load by RNA testing at EOT+12 is considered SVR (cured). Keep your chin up and let us know what you hear when your test results return. Good luck...

Tig

Pericles · Member

Hello everyone. Having finished 12 weeks Sovaldi/Olysio/Ribavirin on June 23, thought I'd drop in to share the good news and what may be the bad news.

The good news is that my labs came back Not Detected at EOT, Not Detected 5 weeks post EOT (couldn't get an appointment 4 weeks post-EOT), and Not Detected 80 days post-EOT. My doctor told me that even though 80 days is not 12 weeks (84 days) post-EOT, it is close enough for him to say I attained SVR12 and that I am cured of HCV. He said I should go back in three months for SVR24.

But for some inexplicable reason, I was not satisfied that 80 days post EOT is the same as 84 days. So I had labs done on September 30, which would be 14 weeks post-EOT. Just yesterday i learned that the HCV RNA Quant. from September 30 was "<15 Detected." To me that suggests relapse. My doctor said I am still cured because the FDA considers "<15 Detected" cured, and that in any event the lab result is almost certainly a false positive because HCV does not come back at such low levels on relapse. But as I see it the bottom line is that HCV RNA was Detected at 14 weeks (98 days) post-EOT despite being Not Detected 80 days post EOT. I went in yesterday to repeat the tests; won't know results until later this week. I don't know what to think.

Isiscat2011 · Guru

Congrats, Tom. Well done.

Can't wait to read your SVR post in 2 months, Rob. I would be begging for a VL check at 4 weeks; I'm sure I would have no self control whatsoever at this point. :)

Did everything check out ok with the cardiologist, Skewed?

Tig · Admin

TomF wrote:
I just took my last dose of S/O this evening.
And now the waiting begins...

Go Man Go!!!! Congrats and on to SVR!! smile

Tig

Fireman Rob · Senior Member

Congrats! I can tell the meds are still in my system at almost four weeks EOT. They are fading fast. Just thought I would throw that out there. Next step- SVR.

-Rob

skewedButNotBroken · Senior Member

Congratulations! I'm 60 days behind you.

TomF · Member

I just took my last dose of S/O this evening. biggrin

And now the waiting begins...

Dzdayscomin · Senior Member

What time of day do you take your meds?I took mine first thing in the morning with a carnation instant breakfast, and my b12 and diuretics then once at work id have an english muffin with peanut butter, or something with some substance...ok sometimes it was a custard filled bismark, but that i just couldn't pass up.

My BP and pulse have been excellent all my life, i did have PVCs since the mid 1980's but those actually stopped after i started HCV tx.

I never had to many sx period, still trying to figure out the muscle aches and joint pain.....but more and more I think it was the HCV attacking the cells that are similar to liver cells all those yrs because the treatments have been so variable in all of us who suffer that same symptom.

Duane

skewedButNotBroken · Senior Member

Ok, for the last 4 or 5 days I've been experiencing shortness of breath, tightness in my chest a very light ache just the left of my sternum and heart flutters a couple of times a day. Dr. Martin's nurse had the Specialty pharmacy nurse call me and she told me to call my cardiologist immediately. So I did and she said to go to the emergency room which I hesitantly did (I hate those places). My EKG and cardiac blood work came back negative. But the ER physician wanted to keep me overnight and perform a full battery of test tomorrow which I refused. I promised him I would follow up with the cardiac doctor. I'm going to that this morning. My blood pressure was 155/90 and it is usually 98/70 so it was quite elevated.

I've been going through a lot of stress at work and just taking these meds causes stress. Also, I believe these meds may be causing my BP to rise which in turn triggers stress. The doctor gave me an intravenous injection of ativan and my BP went from 155/90 to 128/80 in about one hour. He also wrote a script for 10 more 1 milligram pills

Now for the good news. My ALT was 25 and AST was 26. That's the lowest numbers every recorded for my ALT/AST values.

-- Edited by skewedButNotBroken on Thursday 25th of September 2014 02:07:23 PM

TomF · Member

10 days to go. My last S/O dose will be 9/28.

My side-effects continue to be light. The most annoying side-effects for me have been sore joints and pulled muscles. Before starting S/O, I could do my workout without even warming up first. Now I pull muscles just turning on a light switch. I pull something or another at least once a day -- it hurts like hell for 10 or 20 minutes and then it is fine.

I hope that goes away after the treatment stops.

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