Hey there!  Yes i told my doctor About the SOF when the treatment ended and he was fine with it. He is a doctor with low amount of ego, i must say.... The kratom i have been taking for 2 years... all my blood tests were perfect on it other than slightly elevated liver enzymes when i had hep c but that was from the virus....The kratom works wonderfully for body pain, depression and sleep!  I get it directly from Indonesia from a safe source!  There is a lot of misinformation on the web about it believe me.  I am going to try to taper off of it now that the virus is gone but it sure helps my arthritic pain with no side effects... much safer than taking an opiate!!

My blood pressure was a little high here and there but the CQ10 has taken care of that, it widens the blood vessels!!!!

Peace, angel

Hey angel,

I was just wondering about how some of your other things turned out ... like about the sof you added (and the kratom you just mentioned now) did your hep doc end up knowing about both of these things??

Just curious if he did, as you had mentioned it here on the site that he was NOT in know (at least at first) about the added sof - so I was just wondering how that dangling conundrum turned out - was he OK with you adding the sof? (and with the taking of kratom)?

How much does the kratom help your knee? How long have you been using it - since the knee replacement?, or, did you just start the kratom when you were on Mav? 

Very glad to hear you are feeling better in various ways and that your digestion has improved so much, now that you are hepcfree. Really nice.  C.

Thanks you guys and gals!!!  Happy!!

awesome news on the svr12 , thanks for lettting us know

Happy SVR12 Angel! Congrats  - at last, you are here, free, cured of your hepc . What a lovely thing.  C.

Congratulations, Connie! SVR it is! Thanks so much for checking in and sharing the good news with us. Since there isnt a 100% effective treatment yet, there must be someone out there that has failed Tx on Mav, but like you, I haven’t met one yet. Could be those relapse rates were documented during the trials, before they had it all dialed in. We can believe in it as one of the best, that’s not even debatable!

I habe not heard of one person that has relapsed following mavyret, anyone else??

Sorry guys, i wrote info about my situation somewhere on one of these threads.. yes SVR!  I pretty much knew after i got sick with bronchitis when traveling... I had to take an antibiotic and steroids and i had no side effects from the meds... so at that point i was pretty sure the virus was gone and that was about a  weeks before my labs were scheduled....I was a little worried as i took kratom during the entire treatment but my research indicated that it would not be an issue although any doctor will tell you to take nothing...that is an Indonesian tree leaf used for chronic pain....Boy that was a real relief.... which was followed by the bad news that 3 years ago the surgeon actually put the wrong size knee replacement in.... this is why my knee bend is 74 degrees.... it is past the point of filing a lawsuit.. and i was so tied up with dealing with my liver i had to time to work on my knee... but at least i can run and workout, as long as it doesnt get so bad that i cant drive i will be ok....glad i added the sof to mavyret, i would do the same thing all over again...i see i did write below i was going in for my test... yippee, glad that is over with anyway

peace to all, angelseven

Hey RLS,

Well, in some of our other Mavers absences, it is VERY nice indeed to see yer friendly face gracing the pages here once again and you know you would have our fond and wrapt attention should you expound a little on life as you know it on the cured side. Please can't ya fill us in on every good and gory detail of how you have been, faring, what all you've been up to? Missing you around here too.  C.  

She was going in for labs toward the end of August, but hasn’t let us in on the final word yet. I’m going to go out on a limb and say congratulations, if only prematurely! These are awesome treatments and I’m betting we’d have heard from Connie, if something had gone the other way. I hope she is simply overjoyed and hasn’t come back to terra firma after her jump for joy! Fingers crossed... 

I agree, so nice to hear from you and of your updates. Sounds good to me, I like the sound of those improvements you are noticing, too bad about the bronchitis of course. Can't wait to see you with your SVR12 next week - such prizes these milestones are, after all your long hard work and worry and effort you had to put into getting yourself cured. Such a good job, well done. How is the energy level? (as far as doing the tennis which I recall was big for you) and were you not also doing a yoga or another class as well as tennis? Have you noticed anything dif in the way of your strength, endurance or energy since your EOT and onward? I imagine with your brochitis treatment perhaps you had to curtail the tennis activity a bit, but (in general) are you into doing the tennis as much as you were prior? Too bad about that trip to Georgia recently that ended up giving you this brochitis? What kind of antibiotics did you get and for how long? Hope it's working quick for you.  C.

Good to hear from you, Connie! I have all the confidence in the world that you will be SVR. Nice to know you’re already experiencing those welcome improvements! Let us know the good news when you get it! 

I am going Friday to get my test for SVR,  really nervous but i think the virus is gone just by the way i am handling the antibiotics and steroids i am on for bronchitis i got from probable mold contamination in Georgia... Usually i cannot take steroids without being up all night, and antibiotics always made me sick,.  I am having no adverse effects with the meds!!  That is amazing.  Also my digestion is so much better, no more food sensitivities and such.  I guess these are about the biggest changes i see.  So i am hoping i will be SVR, plus I added soisbuvir so that is a plus... I should have the results by next week!

Fingers crossed,  angelseven 

Just a little update on efficacy...

Efficacy of Glecaprevir/Pibrentasvir in Chronic HCV

Clin Gastroenterol Hepatol; ePub 2018 Jul 15; Flamm, et al

August 10, 2018

So happy for you WAFFLE.... my hepatologist actually told me of the 20-30 relapsers he has treated with mavyret, none have relapsed!!!  Wowzie, I centainly don't know of one person yet.  I know you are happy!!  How are you feeling??

I am personally feeling much better after stopping the meds May 12, no "poop" problems, great digestion, no more hot flashes,  Lots of energy.  I had no idea how those meds were wiping me out until I got off of them!!  Yes and perfect bloodwork, no more high blood sugar, no more thyroid irregularities.... amazing what that cruddy virus does to the body and mind

Peace,  connie (angelseven)

Congrats Waffle!! SVR it is! Enjoy the Hep C free life 

NorwegianWaffle wrote:

---

Its been awhile but the results are just in... Not Detected! 

---

 woohoo! great news, it feels so good to know 

Hey waffle,

Lovely for you!!  Congrats on your SVR12. Very special day.

This is where your "dates" (in the signature line) come in handy - saves everybody trying to remember your dates or looking for when you started and ended, to see right off which UND we are all so happy about.  

Maybe, you could add your dates to your sig. line? ... Tx 8 weeks of Mavyret, SOT Dec 29, 2017?, EOT Feb 23, 2018?, UND and SVR12 May 18, 2018? ...   Then we would all be able to easily see it there, in all it's glory!

How have you been feeling? Aside from very pleased with yourself and how all has turned out for you. 

Lovely news, good you posted it. Great big whopping congrats girl! C.

Congratulations Waffle! You must be 12 weeks post treatment! Yay. You are cured now.!!!! That's wonderful news.  How many weeks were you on Mavyret?  Thanks for the update.  I have my SVR12 in 2 weeks or so, but it will actually be SVR 14 weeks. I can't wait!!! Hearing your news gives me lotza hope!!! WhooHooo

are you SVR???

Its been awhile but the results are just in... Not Detected! 

Thanks so much everyone but i wont be doing the big dance till i am SVR!!!!  I pray this black cloud hanging over my life for 43 years is now GONE for good!!!!

Congratulations Connie! It was never in doubt. SVR here we come

You made a great decision angelseven.As you mention,at the time, there was no clinical data on that combination, however there had already been an abundance of reasearch done that Dr. Freeman certainly would have been privy to.

Well done, look forward to your SVR announcement.h

Congratulations, that is such fabulous news.

Enjoy the Joy of being virus free.      

Yaaaaaaaaaaaay angel,

CONGRATS on the return of your EOT "ALL fabulous" bloodwork!  C.

Congratulations Connie! What Wonderful news.  I am so happy for you. Have a fun summer!

Well, i hope we get to the bottom of which treatment is actually better.. vosevi or mavyret plus sof!!!!

Willbb, i was merely doing what James told me was the best thing to do!!  It was hard making the decision because of the lack of clinical data ... but i am so glad i did it now!!!

peace,  connie/angel

Yes, I got all my blood work back today!!!  Silly me , i was in a hurry and opened the wrong report and thought i relapased.... what a relief when i figured out what i did... all of my blood work looks fabulous!!  Even my glucose and thyroid which i asked him to check!!!  I am so grateful the virus is gone....still not sure if i will do the additional test 1 month after EOT, gonna have the dr order it and then i will decide!!

So glad to be getting back to normal and having my body pain go away... cant sleep again, but i can deal with it, that has been going on for years!!

hugs,  connie

Hey willbb,

This is very interesting. 

Can you enlighten me? -  re: how you interpret the activity/potency data within slides 23 and 24, comparing Mavs GLEC/PIB to Vosevsi VEL/VOX?

I hope you do not paraphrase my comments in a limiting way. (I am not badmouthing or downplaying the superb cure rates we are seeing with Mav, if that is what you are thinking)? I hope and wish you are fully taking into consideration my points on the "potency comparison", and the context of the whole of which I was expressing in my prior posts, about the "misnomer" being used to describe Mav+SOF. 

Angel, 

Me too! So, so glad no more pills for you ... getting back to normal life again ... without HCV ... the way it should be!   So, you had bloods drawn on Monday, I wonder when we will hear your EOT results? - soon I hope. C.  

angelseven:

Always interesting to hear of someone advocating for themselves by somewhat thinking outside the box(adding sof to your prescribed tx.)It's not surprising your physician frowned on the addition as he was going by guidelines(and rightfully so) however for reasons of your own you you wanted to add ...and did.

Dr.Freeman is ahead of the curve in HCV and folks like him and even moreso Prof. Feld spend much of their time teaching others from their research(inclusive of the pharmacology of the different medications) .

Again...Good luck with your SVR.il I am pro

Canuck:

You say    "Angel took the most efficatious "off-abel" triple that could be put together. Then you say  "Until I am provided with scientific evidence otherwise,I will stick by my opinion that Mav with Sof while very excellent,should not be called a name that implies it is equal or better than Vosevi.

You first comment is correct and there is a plethura of reasearch that states such,including the slide set Prof.Feld put forth at CCO some months ago (which you copied. I am very familiar with that presentation and actually was fortunate enough to have had a few conversations with the Doctor in great depth on the subject.

Tig:

I will put together a short blurb if you like when I get a chance. I have glanced here and would just like to say you personally are doing a great service here helping folks with good info. and support.

Thanks Canuck, no I have not had a chance yet to looks at those slides, it will happen.... I don't really know enough to label anything, I have just gone by what others have told me...

Wow, Will, how lucky are you to have Dr. Feld as your Dr.  Actually my doctor does not know I added Sof yet.... I mentioned it and he "poo pooed it" so after talking with James freeman more I decided to just bite the bullet and add the generic sof myself and I am really glad I did....I will tell my doctor after I am SVR what I did...   I am sorry but I was not taking a chance of relapsing again.

I am so glad I am done with treatment... it was killing my joints, especially at night after I took the meds... I feel like a different person now.. back to my 5-6 hours of sleep a night but I can deal with it

Peace to all....

connie

Hi willbb,

Welcome here. You are right, and I agree with you, that Angel took the most efficacious "off-label" triple that could be put together, and if all goes to plan it will not have to be done "off-label" for much longer, "recommendations" are in the works!

Angel was very wise and lucky to have orchestrated herself to be able to get SOF and MAV, it was a wise decision and the wisest decision she could come up with given her particular wishes, fears, circumstances and given her hx. She did really, really well for herself and should be applauded for this.

She was wise and lucky to have sought advice, and gained the assistance she needed, her outcome is proving this.

Until I am provided with scientific evidence otherwise, I will stick by my opinion though that Mav with SOF while very excellent, should not be called a name that implies it is equal to or better than Vosevi. Vosevi is Vosevi, Mav is Mav. This is because of the data in the slides I mentioned prior - did you read, in particular, slide 23 and 24 below? This slideset data has your doctors name, and some other well known docs names on it BTW.

Vosevi is a godsend, Mav is a godsend, Mav with SOF is a godsend, so is Dr. Freeman.

Unfailing ultimate respect for Dr. Freeman, Feld (and many others) around here. So many wise and helpful people out there, where would we be without them.

Did you happen to do Mav too? C.

Welcome to the forum, Will. Glad you're here. Can you introduce yourself in our new members section when you can? I'd enjoy hearing more about your current treatment status and some history if you'd like. Feel free to set up your signature line with your Tx history (to relieve you of having to repeat it when asked). It makes it easier to respond and refer if needed. I have a link in my signature line that will help if needed.

We've got a great group here and we all enjoy meeting our newest members. I see from your last post that you're in the Toronto area, considering Dr. Jordan Feld is on your case. He's one of the best Hepatologists around. You're lucky to have that kind of experience available! I look forward to hearing from you.

We've been following Connie for quite some time and you're right, there have been some RAS issues in her past. I'm sure she has sacked the Dragon this time however!

angelseven,

You took the absolute most efficacious combo(off label) on the market today(other than also throwing in the dreaded Riba) Callyour particular treatment what you will,I may tend to use the name TKSA(The Kitchen Sink Approach).

Your physician may have had  concerns about some nasty treatment- emergent Ras's you may have had enhanced from doing Ledipasvir hence adding in the Sof and extending to 16 weeks. Vosevi is recommended for such and also Mav for 16 ,however with Sof added to Mav you did the strongest available

Freeman has treated some 300plus patients for HCV around the world,some with Mfgr.originator drugs and many with Generics and apparently is quite knowlegable and up to date in HCV 

My own physician is Dr.J Feld(who is also very knowlegable in HCV) and speaks well of James Freeman.

Good luck on your SVR blood tests.

No problems! Just excited to hear you tell us that you've finally achieved the hard fought battle against the Dragon. I'm confident with your hard work to obtain the best treatment possible for you, you'll be successful. Please keep me updated on your progress and of course all of the good news coming. You've got this, I'm sure of it. I'll even break out the Magic 8 Ball if you're worried, it's never wrong, lol!

See what I mean

I think this whole thing is being overblown,  thanks,  connie

Ignore that last post, i was on some strange place with this ipad!! 

Geeze, i feel like i am being attacked. I did not post any article

Here ya go Angel. It was in some of my other posts to you as well.

This is how, and in what ways, and to what degrees Vosevi (and it's NS 3/4A and 5A) is different than Mav's 3/4A and 5A, and why Vosevi is "super" and trumps all. Note the "activity" (potency) comparisons.

If you can open this link ... ( 2017 Resource - Treatment Options ) and download the slideset, you will see the 2 specific slides you should read for yourself - (slide #23 - VEL versus PIB) and (slide #24 - VOX versus GLEC) .

 Save Bookmark  Print  Email to a Colleague 

 CCO Home / Hepatitis / Treatment Updates / HCV Elimination / Downloadable Slideset / Maximize HCV Cure and Advance HCV Elimination

Please don't find and re-post that article again (the one where someone came up with that inappropriate name for SOF + Mav. I already read it, in fact, I tried to contact and wrote to the author about it as well, because i believe he should have chosen other words/other names to use to describe the great MAV triple. I would just like to see people calling Mav, Mav (and or Mav and SOF, Mav and SOF) and Vosevi, Vosevi. 

I helps not one bit to correct this "semantics" problem by posting the debatable/erroneous article yet again, or for people to keep repeating this inaccurate name for Mav + SOF.

__________________________________________________________________________________

3 months is "approximately" 12 weeks, but to be accurate ... treatment lengths/time are always expressed in "weeks" versus months. They go by weeks (even though it is easier for us to relate to using months), it prevents counting errors and is more accurate when weeks are used.

An "UND" at 12 weeks after your "End of Treatment" (EOT+12 weeks) IS your SVR12.

Just like the first UND you got (which was at "week" 6 of your treatment), we measure treatment by "weeks", so that one was your first 6 week UND. The terminology and measure we use, while on treatment, is always in "weeks" versus months. 

Then, when you finish your treatment - starting from EOT (and on) you STILL measure time in weeks ... ie. EOT+12 weeks. Say you have an extra blood drawn at EOT+4 weeks, and you get an UND then, you would be SVR 4 (you have held a "sustained virological response" for 4 weeks). 24 weeks after your EOT (EOT+24 weeks) you will probably have more blood tests and your UND then, will make you SVR 24!

Doc's hold wgt. to SVR12, but I think everyone of them are telling in their own way from the first few days, to week 4, right through treatment, to EOT! - i think ALL repeat UNDs aside from SVR12 and SVR24 are good to know. All of them are important (to me anyway).

I am glad you are feeling like you might be a bit better already!  

I will search and find you the info (again), so you can read it for yourself, where they compared the potency of Vosevi's 3/4A and 5A to Mav's 3/4A and 5A.

Later, C.

Here is a thought. I would have only been taking the vosevi for 12 weeks and i am glad i was on the mavyret + sof for 16, that gave me possibiliy of better outcome right there!

con

James wrote:

This is because the Mavyret is the strongest NS3/4A we will ever have and the strongest NS5A we will ever have.

He believes the N53/4a NS5a in Vosevi is weaker than the ones in Mavyret, therefore the term of Mavyret as a Super Vosevi when adding sof NS5B.  You could contact him on facebook and see how he came to this conclusion.

Maybe he is mistaken or maybe he knows something we dont know!  I would sure like to know just to know.  

I basically say whatever

connie

I see Your point about this super vosevi situation .. i got this from someone that put this title to it, James freeman or one of his associates....if i had to do it over i would have just taken the vosevi.  I think the problem drug with harvoni was the led which caused my hair loss and headaches... no hair loss with this treatment and minimal headaches.

what do you mean by svr 12??   I thought 3 months after EOt determined svr??

all i know is that i already feel so much better that i cannot believe it since stopping the meds....i never expected this... those drugs kicked my little butt

You would have to get with James Freeman regarding the Super Vosevi name he came up with, i am going to look for it on my facebook messenger messages.... see if i can repost that.

i wonder when the generic vosevi and mavyret will be available?

connie

So nice you are done. After all your hard work to get to the drugs, all that time and effort, and worry. Finally, you have done it! - 16 weeks done and you will never have to worry about this virus again. I am convinced you are well and truly cured on this "triple", but of course we have to technically wait for SVR12, but personally, I have been partying (for you) since week 6! (if not earlier)! 

Be patient, to recover a bit from the drug therapy, within hours and days, much of the drugs will have left your body, but wait a few weeks and compare how you feel. Keep trying to do the same rest, ample watering and feed yourself really well - I found I really needed to do that for a quite a while after I finished my course. Keep flushing the aftermath of the metabolized drugs from your systems with lots of water.

This is irking me ... the use of the term "SuperVosevi", people should not be using that term, it implies that Mav (with SOF) added is BETTER than Vosevi!! It is not!, it is not an accurate statement, nor cute slang, it is not a correct way to describe these two totally different drug regimes ... Mav is an excellent double (and with added SOF) it can work as a more effective triple for some people than the Mav double alone. Vosevi was a triple by design with SOF (NS5B), VEL (NS5A - a very distinctly unique NS5A), and VOX (a very distinctly unique NS3/4A) all three drugs were included together, from the start in one pill. Vosevi and Mav (even when you add SOF to Mav), are totally different drugs (save for the SOF), Mav with SOF added could never accurately be called  "SuperVosevi", there is no comparisons between Mav and Vosevi!, they are both "one of a kinds"- other than they are both very effective, and, that only when you add SOF (NS5B) to GLEC (NS3/4A - a distinctly different NS3/4A than VOX) and PIB (NS5A - a distinctly dif NS5A than VEL) can you begin to compare Vosevi to (Mav with SOF added), and only in that they are then merely BOTH triples but each containing novel, unique and differing NS3/4A's and NS5A's. You can compare the very good high cure rates of both these triples but the drugs and formulas of each are "one of a kind", read the potency comparisions between Vosevi's 3/4A and 5A versus Mav's 3/4A and 5A. This is why Vosevi reigns supreme and is the ideal for relapsers. Mav with SOF is also proving excellent for relapsers, with very excellent rates of cure. The newest reccomendations are actually speaking of "straightening out" that option, to add SOF to Mav (like they have been adding the SOF in Australia and elsewhere to boost a double, when Vosevi was not available to them) and to begin to do it everywhere (more in a normalized authorized manner and fashion), rather than making people go through what you had to do to get your SOF added to your Mav! But Mav with SOF is NOT a "supervosevi", there is ONLY ONE Vosevi and it IS SUPER, period!, just like Mav is made more SUPER (than Mav alone) with SOF added to it - it would be accurate to say that the triple you took was "SUPER-MAV", or, that you had your "Mav Deluxe - SUPER-SIZED", or that you've been "Super-Maved"! Australia and many other countries have been kept waiting for Vosevi for too long. Mav with SOF added is an excellent second option as a triple for relapsers.

Congrats on reaching EOT! Woot!! I am confident that you're going to be successful this time around. I know the anxiety after relapsing, but have a feeling that this is your time. I remember turning off my alarm, mine went off three times a day. I had used the cricket sound and to this day, hate cricket noise! It'll take a few weeks to get the feeling that you missed something to let up, but when you realize you're done and don't have to worry about it anymore, the smile replaces that worry. 

You mentioned a video. I'm not sure what type of a file you had saved. If it was large, video files typically are, it may not have transferred in the amount of time you allotted. Our attachment function is generally for photos/stills. Most video files are uploaded via something like You Tube due to their size.

Well, i tried but i dont see the attachment?!?