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.

awesome news on the svr12 , thanks for lettting us know

That's awesome Connie! These new treatments are great. Good luck with the knee and continue to feel good and virus free. rls

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

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.  

Angel7? SVR? Maybe I missed it on another discussion, hard to follow all the threads. Been thinking about you!

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! 

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

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

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.

 

are you SVR???

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!!!!

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.      

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

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

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.

 

    

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.

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.

 

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

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

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.

-- Edited by Canuck on Tuesday 15th of May 2018 01:30:46 AM

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

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.