I don't know of any trial for that. Most people stop at the end of their prescribed treatment plan.
The protocols are designed get to Sustained Undetected AND/OR <12. That's the finish line. So finish, already.
mcmaklin said
Dec 29, 2018
Thank you again.
How the drugs can affect organs if you take After 4 months of Vosevi tHe Epclusa (Velpanat from Natco)? What they do if there is no virus? Where there trials when people were taking Epclusa for more than 4 months? Was it safe?
Canuck said
Dec 28, 2018
Hi Mak and (hello again sleestak!),
Nice to hear from you again sleestak - and very nice you have added some of your past hx here for Mak's benefit and perspective, but I am still curious as to where all your OLD posts and hx live sleestak, your "on-treatment" threads, etc., (that I have inquired after before), but it is nice to at least find out more about you today by your post to Mak.
BTW sleestak - of the few and varied posts you have made, the comments or the material you bring up is often of very good interest - you should post more! I like your new avatar as well, some dif from the old fighter one!
So Mak, being that you said your extra 4 weeks of Vosevi is coming to an end about Jan 2nd, please let us know what your decision is ... will you or won't you be taking the additional 4 weeks of Epclusa starting Jan 3? You have a lot of people here on the site interested to find out what your decision is going to end up being. Let us know as soon as you will please. Whatever you have decided Mak, I hope it IS the start of some peace for you. C.
sleestak said
Dec 28, 2018
Hey Mac
I am totally with you in this dilemma. I know the disappointment of failing a highly anticipated successful treatment with the new DAA's, with the high cure rates toted as being 90+%.
I have to note the unusual frequency of VL testing done in your treatment. If weekly VL testing was applied to everyone I am almost sure we would see fluctuations between Detected, Not Detected. I understand that seeing these fluctuations after being undetected is somewhat alarming and as such, perceive it to be the virus trying to bounce back. Also to note, you were testing at 2 labs correct? We cannot know for certain why the tests detect low levels of virus. We do not know if they are dead virions, stragglers, or false positive results. It is easy to conclude, especially after relapse on a DAA regimen, that it is virus mutation. The detected <12 result at 9 wks after Undetected at 8 wks, is insignificant in my opinion especially when it was Undetected that same day. Considering you have already completed a 12 wk course, and now another 16 wk course of even stronger drugs, I would consider the affects on your system. Most of us do not have the option of taking additional meds. We complete our treatment and whatever will be will be. It is hard for anyone to advise in this circumstance. That all said, there's a bottle of meds sitting up on that dresser. The decision is yours to make. Weigh everything out, make your choice. Stressing over this is not good either. I honestly believe you are more than likely cured at this point. Be well!
mcmaklin said
Dec 28, 2018
sleestak wrote:
In your circumstance - non-cirrhotic, GT 1b, No NS5A RAV's, Undetected since week 10, retreating with a regimen with all 3 antivirals with high barrier to resistance, - You have a lot of positive factors going for you. There is no information on treating longer after 16wks of vosevi that I am aware of. I guess I my main consideration would be how the drugs are affecting organs.
Thank you - the truth is I had NS5A RAVs - mostly L31M. Yes I wonder, yes maybe it is not so good for organs, although it is not Ribavirin.
mcmaklin said
Dec 28, 2018
Hello - no, <12 meant they they were not able to quantify but the virus was still detected
Shemp said
Dec 28, 2018
Hey Mak,if I'm reading this right VL<12 is undetected.And a few hours later it said undetected?IMO you need to stop treatment.But,I don't have MD after my name.Good luck.
mcmaklin said
Dec 28, 2018
Tig, please look a few (6) posts down, I am pasting again in this post. I wrote all my treatment history. I have extended 3 months of treatment with Vosevi to 4 months with the Vosevi - I decided to buy 1 additional box of Vosevi myslelf - and now I am thinking to extend with a generic Epclusa that I have got from India, one month more. As I was late responder. I never decided to stop treatment and then try again. If I stop then I stop forever.
I am pasting you again:
2ndTreatmnt geno 1b- Vosevi 12 weeks - SOT Sept 12 2018 to EOT Dec 5 2018. Pre-treatment - VL 1.4 mil, ALT 45, AST __, ALP 69, GGT 90, bilir 16.
2 weeklabs:VL 49, ALT 26, AST __, GGT 53. Bili 21,
4 weeklabs:VL <15, GGT42 other normal
5weeklabs:ALT 17,AST 27, Bili 11.8, ALP 68, GGT 36 ... VL 12,
6weeklabs ALT 19, AST 26, Bili 16,20, GGT35, VL<12
7week GGT34, ALT 19.1 AST 26.4, Bili 17,9 , VL<12
5 Nov Official test undetected
8week (6nov) GGT31, ALT15.6, AST22.4, Bili 16.6, UNDETECTED
15 nov after the beginning of week 10
GGT 27, Bilirubin 23,30High, ALT 16.5, AST 23.7, VL<12
15 Nov a few hours later UND
19 Nov ALT 17.10, ast 26.5, ggt28, bili 17.5, UND
3 DEC 12week ALT20,7. AST24,3, GGT 27, Bili 12,10, UND
I take Vosevi one month more
21 DEC. ALT 28.5 AST 27.4 bili 13, phosphataze 76, GGT 32, UND
Tig said
Dec 28, 2018
Help me out here, Mak. You did 12 weeks of Vosevi, correct? When did you get 4 more weeks of Vosevi? You told me that you got 4 more weeks of Epclusa medication, right? So, what do you have now? This is getting terribly confusing and I'd like to know what you're doing? By now you must have had to make a decision, right? When was (is) your original end of treatment date? Dec. 5th? The one with the 12 weeks of Vosevi? Where did you obtain the extra 4 weeks of Vosevi or Epclusa? Vosevi is very expensive. They don't have Vosevi generic yet, at least not anywhere I've seen. You said you had 4 more weeks of Epclusa, do you still have it? You can't just end treatment with one drug and wait a few weeks and safely decide to start 4 more weeks of anything. That's very unwise, if that's your plan. We can't advise you on any of this. Please discuss it with your doctor.
We need to put a close to this pretty soon. Thank you for your understanding.
mcmaklin said
Dec 28, 2018
I only extended it 4 extra weeks with Vosevi but it was wise as I was undetected late after week 8 and then the virus waa trying to appear for a while.
-- Edited by mcmaklin on Friday 28th of December 2018 02:51:33 PM
Cheddy said
Dec 28, 2018
Mak,
We have all weighed in on this and nobody is saying to take extend your treatment.
My personal advise is:
Finish your current treatment and stop it.
Happy New HepC Free Year, Mak. I hope it's a good one.
sleestak said
Dec 28, 2018
mcmaklin wrote:
Is there any logical knowledge that says that it would be possible for the virus to come back because I take extra Velpanat After the Vosevi?
I was presented with a similar decision after failing Sovaldi/Olysio. I retreated with Harvoni /Ribavirin 12wks. I had a choice to do an additional 4 wks of Harvoni but it would have been obtained illegally (Donation from fellow treater who had extra). I decided to stop at 12wks and let the chips fall where they may. I was Undetected since wk 4 of treatment. In hind site, due to the changing guidelines that occurred at the end of my treatment, I would have probably done the extra 4 wks (even illegally obtained). The regimen of Harvoni /Ribavirin 12 wks for retreatment was based on limited evidence and was revised to extend to 24 wks, and later removed altogether for retreating Sofosbuvir/simeprevir failures.
I did acheive SVR 12, 24 on that regimen. I did not have RAV testing. I retreated 1 year from EOT. Unsure of fibrosis score. Ledipasvir is an NS5A inhbitor with a low barrier to resistance.
In your circumstance - non-cirrhotic, GT 1b, No NS5A RAV's, Undetected since week 10, retreating with a regimen with all 3 antivirals with high barrier to resistance, - You have a lot of positive factors going for you. There is no information on treating longer after 16wks of vosevi that I am aware of. I guess I my main consideration would be how the drugs are affecting organs.
If your looking for opinions - my vote is to stop treatment at 16wks of vosevi. Harvoni /Ribavirin12 wks knocked mine down after a DAA failure. Your regimen is by far a more effective regimen than Harvoni. Good luck and Happy New Year with an HCV free life!
Tig said
Dec 28, 2018
Sorry, Mak, I have no information that might answer that question for you. If you want to take it, that’s your choice. You have to decide when enough is enough and go with it. You can’t continue to take this medication forever. We can’t help you make this decision. It’s up to you and your doctor. Finish treatment, wait 12 weeks and test your viral load again. That is what you need to do.
mcmaklin said
Dec 28, 2018
Is there any logical knowledge that says that it would be possible for the virus to come back because I take extra Velpanat After the Vosevi?
Tig said
Dec 28, 2018
Hey Mak,
We don’t have any additional information than we have discussed and provided before. This is a decision you have to make with your doctor. I don’t think there is anything else we can add at this time. If you want to take 4 more weeks of Epclusa, it’s up to you.
mcmaklin said
Dec 28, 2018
I know I am not asking you what to do because I must make decision myself.
But I need PLEASE some more knowledge. Is my thinking right here? Thank you
When I stop treatment if the virus is there hidden it will come back for sure
If it is still hidden when I continue with Velpatasvir it is still possible to destroy it
If it is not there continuing one more month or 2 weeks with Velpatasvir will not do any harm, why would it?
So whatever heppens when I continue for a while more I have better chances to get cured. I have no side effects. Why not to add chances
Cheddy said
Dec 26, 2018
Mak,
Congratulations on that UNDETECTED! Vosevi does a great job. I trust very much that you will finally have a HepC free life.
Wishing you peace and good health in the New Year.
Tig said
Dec 25, 2018
1. I don’t think taking 4 more weeks of Epclusa will cause any harm, but I’m not a doctor, so I can’t provide a definitive answer. I don’t think it will add any benefit either.
2. The drugs are out of your body in less than one week.
3. The Vosevi trials (Polaris) were 8 and 12 weeks only. Here’s some info on the trials:
With previous drugs I finised and they were surprised that I have relapsed.
So
1.can taking more Sof+Vel make any harm?
2. How long are the drugs in my body when I stop taking them?
3. Were there trialas with 20 weeks or 24 on Sof+Vel or no Sof+Vel+Vox? Where there people who were taking it so long?
-- Edited by mcmaklin on Tuesday 25th of December 2018 06:23:22 PM
Tig said
Dec 25, 2018
Let me use an analogy: If you had been treated for cancer and your doctor said you were cured, would you decide on your own, to continue taking chemotherapy? For what purpose? You have to trust the process. Time to find out if treatment worked and if you’re one of the 98%ers. My money is on your success!
mcmaklin said
Dec 25, 2018
Thank you-
1I understand everything but what bad things can making treatment longer cause?I guess only make the virus even more stronger if it survived.
2. Is there a chance if the virus is hidden somewhere that Sof+Vox only would kill it when I start take less potent drugs?
3. This was very interesting: the drugs are hardcore, heavy duty . That I need to get rid of the system to feel well (I feel well on drugs) - but how long they are going out from the system?
4. Are there any side effects when you stop?
Canuck said
Dec 24, 2018
Mak,
You said ... "I know you cannot say more ... I need to make the decision ... I know it will be my decision" ...
You are right Mak, there is no point (or further useful help that we seem to be able to offer you) in asking us the same thing again (about what you should do), we have all already expressed what we can on the subject - this decision IS up to you.
Use your logic and best judgement.
I am sure you will figure out what you are going to do soon, if you have not already made up your mind.
I like your old docs use of the word "peaceful" - you do very much deserve that.
I hope if you are over in Poland you are having a nice visit with family maybe? Either way, whether in UK or not, all your pals here wish you well and happy, and that you do reach your decision and your peaceful place soon! C.
Cheddy said
Dec 24, 2018
We cannot give you medical advice. We can only pass along what we have learned, studied, and experienced. We can lend support and pass along information. Most of the information we gather comes from medical information available to the public. Lot's of the information comes from the same sources available to our doctors.
No additional DAA will work on a virus that isn't there. I understand you are concerned that there may be some duplicates hiding. As I understand, that is the reason the treatment continues after your wonderful <12/UNDETECTED status, usually 12 weeks. You've had 16 right? So you've already had the big dose. I'm saying that the treatment you have taken has gone on long enough to "make sure" according to todays protocols.
These drugs are hard core, heavy duty. They affect your whole body. As miraculous as they are, you want to get them out of your system too, so that your body can return to normal. That's usually when you start to feel better and better.
So, Mak, I'm going with your doctors. Stop it.
I wish you peace and wonderful health in the new year.
mcmaklin said
Dec 24, 2018
So less potent drug wiill not work if I have no virus for now and if it tries to reapear from body tissues If it is hidden?
will it harm ? If it may help so why not to take it?
lamassu said
Dec 24, 2018
Taking a less effective DAA like Epclusa after 16 weeks of Vosevi makes no sense. Follow your doctor's advice and stop DAA treatment after the 16 weeks of Vosevi.
Cheddy said
Dec 24, 2018
If it were me, I would stop. No doubt about it.
Tig said
Dec 24, 2018
Hey Mak,
You’ve been thinking and over thinking this for too long. One of these days you have to stop treatment and let the cards fall where they will. We can’t make that decision for you. I’m in agreement with your doctor, it’s time to stop. I don’t think the addition of 4 weeks of Epclusa will make any difference, other than extending your EOT date. If I thought it would help, I’d say why not, but I don’t think there’s going to be any additional benefit from it. The rate of success with Vosevi is as high as it gets. Have confidence in that.
mcmaklin said
Dec 24, 2018
Hello - I know you cannot say more, but I would like to have the knowledge to decide what to do.
I need to make the decision the first of Jan if I shall continue to take Sof+Vel only for 1 month more.
My doctor (the old one is not saying more than Therapy was anyway longer than standard, and I can peacefully finish it by the 1st of Jan. the continuation would not bring any harm, but (in her opinion) benefits and is unnecessary.
Now I need you to help me workout the problem, I know it will be my decision.
My way of thinking:
Variant 1. I stop taking drugs (4 months of Vosevi) - if anything left my immune system kills it? Is it able to? If there is anything left it would be better taking drugs longer
2. If I continue a month more with Sof+Vel, if there is anything left the drugs stop multiplying the virus and my immune system is able to kill it without the Voxilaprevir. BUT MAY IT THINK it will be like that forever, BUT THEN when I stop ALL DRUGS something wrong may happen?
3. If there is ANY percent I can have a better chance by taking drugs longer a month I believe it is worth of it.
robertsamx said
Dec 21, 2018
Thats Really good news! That UND looks sooo good! Mac after you do your last 4 weeks of vosevi your going to move on to SVR!!!!!! I think your choosing the extra 4 weeks of vosevi was wise and will be the end of your dragon fighting days. With those great numbers you report I dont think the Epclusa is warranted and I would advise you not to take it, theres no need to- You got this dragon in the bag, Its dead and congratulations to you are in order. RC
mcmaklin said
Dec 21, 2018
Hello I did a blood test yesterday.
Here is the history
2ndTreatmnt geno 1b- Vosevi 12 weeks - SOT Sept 12 2018 to EOT Dec 5 2018. Pre-treatment - VL 1.4 mil, ALT 45, AST __, ALP 69, GGT 90, bilir 16.
2 weeklabs:VL 49, ALT 26, AST __, GGT 53. Bili 21,
4 weeklabs:VL <15, GGT42 other normal
5weeklabs:ALT 17,AST 27, Bili 11.8, ALP 68, GGT 36 ...VL 12,
6weeklabs ALT 19, AST 26, Bili 16,20, GGT35, VL<12
7week GGT34, ALT 19.1 AST 26.4, Bili 17,9 , VL<12
5 Nov Official test undetected
8week (6nov) GGT31, ALT15.6, AST22.4, Bili 16.6, UNDETECTED
15 nov after the beginning of week 10
GGT 27, Bilirubin 23,30High, ALT 16.5, AST 23.7, VL<12
15 Nov a few hours later UND
19 Nov ALT 17.10, ast 26.5, ggt28, bili 17.5, UND
3 DEC 12week ALT20,7. AST24,3, GGT 27, Bili 12,10, UND
I take Vosevi one month more
21 DEC. ALT 28.5 AST 27.4 bili 13, phosphataze 76, GGT 32, UND
Canuck said
Dec 16, 2018
Re: Your question ... "Can this additional Epclusa do some harm or to cuase that I will not receive the SVR? This is my unaswered question" ... - your docs could not answer this question (fully) for you, because there is not the data on it to back them up in expressing a firm and proven opinion on it, so how can you expect an answer on the same from us?
In a perfect world, (1) you would already know/accept/guess you have no need to do the epclusa and then just wait until your SVR12 to confirm that you are indeed cured, or (2) you will do the epclusa and it may not make one iota of difference as you are already cured, or (3) the docs could not fully answer you as to whether there was (or was not) any good or detrimental effects of taking an additional 4 weeks of the lessor double epcusa as far as effectiveness or resistance (if you are cured now and all you have to do is sustain it, then an additional 4 weeks of the lessor epclusa one would guess would neither be "effective" nor might it "contribute" to resistance.
In a perfect world, you would have unlimited funds and free and easy access to vosevi and if you kept choosing to extend your therapy, then it would be with the same triple and not a lessor double (just on principal of sticking with one triple therapy which is a superior therapy to a double).
Re: Your comment ... "I believe I am cured" ... - your docs are also "guessing" you are cured, I would "guess" you are cured, you "guess" you are cured!. No one will be able to "officially" prove this until SVR12.
You were querying what your doc said from below and you said ... "For me only what is not clear is:At the current stage (no features of virus replication) there is no risk connected to 2 drugs sets /3 drugs sets" ...I think the way your doc worded this, that the meaning(s) could be a little ambivalent, one can take this various ways and in various directions depending on how you read it/interpret it - you would have to ask him if that was what he meant when you thought it suggested "there is nothing more to treat". Again, on the topic of going slower to UND than other people? - you will probably never know if it had carried any potential negative significance, there was (to the contrary of any negative connotation) documentation of successful SVR12 despite longer detected status's. Your first therapy cannot be compared to this one in any way, different circumstances, conditions, variables, but especially because they were different drug treatments and you had different RAVs - maybe one of the biggest cure obstacles you carried was your TT status - who knows!
No idea whether the epclusa would do you any kind of harm, I could not possibly answer. I do guess you are technically very cured, and that further treatment is redundant. C.
mcmaklin said
Dec 14, 2018
Thank you Canuck. I thing they gave the best possible answer. For me only what is not clear is: "At the current stage (no features of virus replication) there is no risk connected to 2 drugs sets /3 drugs sets.
So would it simply mean that there is nothing to treat more. What does "no features of virus replication mean"? So if there is no replication why we are so affraid of what happens when we finish treatment? I know one person (she had Y93h and genotype 1b and F3) that was UND the first month of Exviera/Viekira and the she measured HCV RNA (not quantititve) and the EOT and she was detected again. Then she relapsed. Now she is on Mavyret + Sofosbuvir + Riba (my 2nd doc managed to measure that she is RESISTANT to Valpatasvir!!!, I was suspectible for VELPATASVIR.
I believe I am cured. I am not repeating blood tests for now because it probably simply does not make sense. My concern was only this <12 in the middle of my treatment that turned into UND the same day! (who other was so lucky to have 2 blood tests the same day). Could it be a lab error? So I am thinking of my treatment now, not the previous one which is not important now. I do not carry so great trepidation of prior failure, but only this that on current treatment I reacted quite slow to become UND (whyy?) and this <12 at 3/4 of my planned treatment after being UND.
I do not know if I take Epclusa after the 1st of Jan. it also seems to me that an additional month on Vosevi is a lot. Can this additional Epclusa do some harm or to cuase that I will not receive the SVR? This is my unaswered question. And thank you again for your help.
Canuck said
Dec 14, 2018
In my book vosevi is the best, I was just plain very lucky to even be able to get my vosevi. I only got my vosevi because i was fortunate enough to win my way into one of the last seats left in one of last vosevi trials. I only got 8 weeks of vosevi in my arm of the trial because I had no choice about which arm of the trial I got in to, thus how long the course length was going to be. I considered myself very lucky just to get into the trial, period, and to get my 8 weeks of therapy! But, if I had had a choice, i would have chosen an arm that had a longer vosevi course. Now that vosevi is in use, of course everyone is rx'd 12 weeks.
Please note the key words I used (in my comment that you were asking about) ..." if I had a choice" ...
If I put myself in your shoes and carried great trepidation about a prior failure, I too would be fighting fears and wanting the best possible treatment for myself - i think you have already achieved this (the best treatment, in spades!) by doing not just the 12 weeks of vosevi, but by doing a total of 16 weeks for good measure!
Lets just say ... if I had ever decided i had wanted to extend my vosevi treatment (for some reason), then NEVER/EVER would I have been able to afford buying my own "extra" 4 weeks of vosevi, period, that would have been impossible, circumstantially at that time, and financially and logistically - if I had suffered from severe fear of failure i might have felt strongly compelled to wish for an extra 4 weeks of vosevi, for "assurance" purposes - but because of the circumstances then, I would never be able to swing it, me buying extra vosevi would have never happened - I "would not have had a choice".
Pretend I could have obtained extra vosevi and could have afforded to buy it, and further more, that I could also do this to get epclusa as well! (then I "would have had a choice") - in that case, with this "choice" presented to me, i would have always chosen to extend with the vosevi triple versus switching over to the epclusa double, as the vosevi triple has simply been shown to be is superior to a double in various ways.
Re-read what your docs have communicated with you, about how there is NO data to support one theory, one way or the other, i.e. how he answered your questions about "benefit and harm, including resistance" .
Your docs (and us here) would find it difficult trying to answer some of these hypotheticals you bring forward, about what "might" happen or not happen and how and why - if prior data about it is NOT there to refer to and rely on. Some questions just will never have simple straight-forward answers or at least any easy answers!
Were you satisfied with what your docs communicated to you? Are you thinking you will be doing the epclusa then? C.
Canuck said
Dec 14, 2018
In my book vosevi is the best, I was just plain very lucky to even be able to get my vosevi. I only got my vosevi because i was fortunate enough to win my way into one of the last seats left in one of last vosevi trials. I only got 8 weeks of vosevi in my arm of the trial because I had no choice about which arm of the trial I got in to, thus how long the course length was going to be. I considered myself very lucky just to get into the trial, period, and to get my 8 weeks of therapy! But, if I had had a choice, i would have chosen an arm that had a longer vosevi course. Now that vosevi is in use, of course everyone is rx'd 12 weeks.
Please note the key words I used (in my comment that you were asking about) ..." if I had a choice" ...
If I put myself in your shoes and carried great trepidation about a prior failure, I too would be fighting fears and wanting the best possible treatment for myself - i think you have already achieved this (the best treatment, in spades!) by doing not just the 12 weeks of vosevi, but by doing a total of 16 weeks for good measure!
Lets just say ... if I had ever decided i had wanted to extend my vosevi treatment (for some reason), then NEVER/EVER would I have been able to afford buying my own "extra" 4 weeks of vosevi, period, that would have been impossible, circumstantially at that time, and financially and logistically - if I had suffered from severe fear of failure i might have felt strongly compelled to wish for an extra 4 weeks of vosevi, for "assurance" purposes - but because of the circumstances then, I would never be able to swing it, me buying extra vosevi would have never happened - I "would not have had a choice".
Pretend I could have obtained extra vosevi and could have afforded to buy it, and further more, that I could also do this to get epclusa as well! (then I "would have had a choice") - in that case, with this "choice" presented to me, i would have always chosen to extend with the vosevi triple versus switching over to the epclusa double, as the vosevi triple has simply been shown to be is superior to a double in various ways.
Re-read what your docs have communicated with you, about how there is NO data to support one theory, one way or the other, i.e. how he answered your questions about "benefit and harm, including resistance" .
Your docs (and us here) would find it difficult trying to answer some of these hypotheticals you bring forward, about what "might" happen or not happen and how and why - if prior data about it is NOT there to refer to and rely on. Some questions just will never have simple straight-forward answers or at least any easy answers!
Were you satisfied with what your docs communicated to you? Are you thinking you will be doing the epclusa then? C.
mcmaklin said
Dec 14, 2018
Thank you again. I will not be asking anymore, only pleae tell me why? In your opinion:
"Personally, all I can say is (that if i had a choice) i just wouldn't want to be taking an extention of a lesser drug if i had been on a better one (a downgrade)"
Canuck said
Dec 13, 2018
Mak,
Like I said earlier today - i have a feeling you are leaning toward taking the extra epclusa anyway, even if you are not outright saying that is how you are really feeling about it. So, I don't really know why we are still hashing out all these possible nuances - I am just going by your fear-based decisions and therefore guessing that you probably WILL take the epclusa, and also because neither of your doctors told you that you could NOT.
Your docs DID already answer quite a few of your questions regarding any possible good or bad that might occur if you did take another 4 weeks of a double (epclusa) - your docs cannot possible answer you more definitively if there is NO known data to prove or disprove what is good or not! Neither can we here be guessing, when there is no data to refer to.
Personally, all I can say is (that if i had a choice) i just wouldn't want to be taking an extention of a lesser drug if i had been on a better one (a downgrade), but, i really have no idea how anything could work out if you did - just listen to what your docs have spelled out to you and make your decision. C.
mcmaklin said
Dec 13, 2018
It was gone w on my previous treatment so how to came back!?
mcmaklin said
Dec 13, 2018
Once again:
There are 3 drugs ABC that stop the virus to multiply. The immune system is able to kill the virus because d is not able to multiply.
When you stop the treatment if there is any the immune system will be able
to kill it or not.
There are 3 drugs ABC. The immune system is able to kill the virus if it appears because the virus is not able to multiply. When I stop drug C if there is a virus the immune system is able to kill the virus probably but it must work more then with drug ABC all together. But the immune system thinks this is OK I will be able to kill the virus. Then you again stop drugs AB. Will all of this not fool immune system for bad? . I heard not drugs are killing the virus but my immune system.
Cheddy said
Dec 13, 2018
The virus can't come back if it's gone.
As I understand, you continue to be undetected.
Are any of your doctors recommending that you continue? As Tig asked, when do you stop if undetected is not enough? At some point you have to stop. At some point, you have to conquer you fears. Believe me, we've all had them!
I'm sorry this is so difficult. It's a big process. You will find great relief when you reach the end, and can go on to enjoy a cure.
Hang in there, Mak. You are almost finished with a well prescribed protocol.
mcmaklin said
Dec 13, 2018
Hello, Thank you, I am not goint to take it so long. Maybe the Epclusa a month more. It has no side effects, sometime it gives me dhiarea, or maybe a bit tiredenss, but this tiredess is nothing comaring to living with a virus, when I was much more tired!
This was important for me: At the current stage (no features of virus replication) there is no risk connected to 2 drugs sets /3 drugs sets.
So I am trying to understand how it is - does it make sense to take the Epclusa or it may do anyting worse, than it would be better just finish when I run out of the Vosevi.
What can additional Epclusa reassure me? Will Epclusa give me a better chance that the virus does not come back OR it may do worse things as there is a less potent drug so can mutate the virus if it exists? Fool the imune system a bad way? Simple: CAN ADDITIONAL EPCLUSA less potent drugs do wrose than not taking any drugs at all. What can this time-frame treatment without Voxilaprevir do?
Canuck said
Dec 13, 2018
Very good Mak, that you have been communicating with both your docs on this subject (of whether you should or need to further prolong your treatment, with yet another month, but on epclusa versus vosevi).
As I read the words you relay from them, it would appear they are both leaving this "taking of 4 weeks of epclusa" decision up to you. I defer to them, and to you for what you finally decide.
We can all read between the lines here (in what both the docs have stated, and what your concerns are), the unknowns, the what if's, whether all this treatment is overkill, whether overtreatment could hold potential sides, but ultimately both these docs have left this in your hands for the decision. The decision is yours. I think you likely WILL take the epclusa (1) because you have it sitting on the shelf ready and waiting (2) because no doctor told you NOT to (3) becasue you wish to insure yourslef as best as you can that you are cured this time. While you are on therapy, just the act of taking the pills themsleves is reassuring to a degree, especially so when we have been very unnerved/frightened by a prior failure. Prior failures are hard to deal with. It is hard to remain feeling confident and assured that you are cured this time. I am betting, even if you take the 4 weeks of epclusa, you will still be fretting until your SVR12.
Personally, i certainly guess you are well-cured - BUT no can really say so, can they, until you have sustained your UND to SVR12 and beyond. If you end your vosevi on Jan 2, you will not know the results of your SVR until about the end of March! If you take another 4 weeks of epclusa, you will not know your SVR12 until the end of April!
Keep us posted how you are doing, feeling and what you are thinking your decision will be - are you satisfied with what your docs have said to you?
C.
Iris Dragonfly said
Dec 13, 2018
oh yes, Robert is quite the trouper, an inspiration indeed.
It's looking good Mcmaklin! Keeping fingers crossed for you! Huzzah!
Bb, Iris
mcmaklin said
Dec 13, 2018
And more this is from my other second doctor:t These drugs are very safe and for sure taking them is not connected with any toxic symptoms. At the current stage (no features of virus replication) there is no risk connected to 2 drugs sets /3 drugs sets. I think making treatment longer is not necessary as this 16 weeks should be absolutely enough. But if you have doubts eating additional drugs should not have any negative symptoms.
mcmaklin said
Dec 12, 2018
Hello, Robertsamx I read your story and the article you sent! Congratulations, it was incredible that you made it! You are my hero indeed.Yes I have a different genotype 1b which maybe is easier to treat than 3?
I will be speaking to my doctor about it. I am thinking of taking Generic Vox+Vel as month 5.
I got the message from professor Geoff D. that I was privately before. This is what he wrote me.
I personally do not understand what is the risk here. I am the persons who maybe has less drugs level in blood than other people this is why I react slower. I have no side effects, so maybe this the confirmation. My generic drugs are already on. the Shelf.
When I stop SOF+Vel+Vox after month 4 if there is anything left in my liver it could potentially get up unless viruses are able to multiply. When this is a case my immune system cannot do anything and I can relapse.
When I start month 5 with Sof+Vel ONLY if there is anything left drugs will inhibit the virus to multiply and my immune system will kill the rest, or at least there is a better chance it will than when I do not take any drugs at all
When I start month 5 with Sof+Vel and there is no virus there will be no virus whenever I take drugs or not.
So why it is so bad idea to take more if I can?
On previous therapies with interferon there has been told that you must try to take drugs for 42 weeks more after you are Undetected.
This is a message:
"I am pleased that you are showing an on treatment response to the triple combination of SOF VEL VOX.
I note you have added an extra month.There is absolutely no data to inform whether a few extra months of SOF VEL would be beneficial. None at all. I understand your desire to be cured, but I cannot provide any meaningful or rational advice to you as to what you should do - you will have to make the decision yourself. Let me stress: there is no data to suggesteither benefit or harm, including resistance with your proposed strategy."
robertsamx wrote:
Mac, I was also a slow responder to VOSEVI, and I too ended up taking Vosevi for 16 weeks and I am cured. 16 weeks will also cure you. You should not take the Epclusa with out your doctors recommendation. I know how it feels to fail previous treatments, but the new DAAs are so good,especially vosevi.Dont let those past failures controll your current treatment. Do your 16 weeks and know your going to be cured. RC
Cheddy said
Dec 10, 2018
Oh yes, I see, Iris. I was following the title of the post. No criticism intended, please know. Yes, Robert does have a great attitude, doesn't he?
Hope you feel better soon.
Iris Dragonfly said
Dec 9, 2018
Cheddy wrote:
I dunno. "One day at a time" is not a treatment plan. A plan is an ongoing series of steps to be followed through.
______
I was refering to Roberts comment
Tig said
Dec 9, 2018
Mak,
We can’t advise you on whether to take the remaining Epclusa or not. I’m of the mind that you are clear of the virus as the result of 12 weeks of Vosevi. Talk to your doctor and make an educated decision. Experimenting with different drugs, protocols and manufacturers, is not the best of choices in my opinion.
You can’t continue to take these powerful drugs forever. At some point you have to end treatment and wait until week +12 to find out. If you relapse after everything you’ve done to date, you will have no choice but to repeat a longer course of Vosevi. We all were anxious during that wait, but we all conquered our fears and Dragons! So will you...
mcmaklin said
Dec 9, 2018
lamassu wrote:
Mak,
Yes, taking the Epclusa "just in case" after finishing 16 weeks of Vosevi could hurt you. Listen to your doctors. You have three weeks I believe? Taking Epclusa after 16 weeks of Vosevi when your labs say cured is not only not needed but could be harmful. First, these DAAs are powerful drugs with side effects.
I have no side effects
Second, there is no more effective DAA than Vosevi at this time. If you still have a few HCV virus in hiding going back to the less potent Epclusa could conceivably cause the virus to mutate which is the last thing you want.
This is what I was afraid of. But if I still have and stop taking drugs they will multiply even more easy?
I know Guidance says 12 BUT it does not say what if you react so slowly as I did.
-- Edited by mcmaklin on Sunday 9th of December 2018 05:10:20 PM
robertsamx said
Dec 9, 2018
Mac, I was also a slow responder to VOSEVI, and I too ended up taking Vosevi for 16 weeks and I am cured. 16 weeks will also cure you. You should not take the Epclusa with out your doctors recommendation. I know how it feels to fail previous treatments, but the new DAAs are so good,especially vosevi.Dont let those past failures controll your current treatment. Do your 16 weeks and know your going to be cured. RC
lamassu said
Dec 9, 2018
Mak,
Yes, taking the Epclusa "just in case" after finishing 16 weeks of Vosevi could hurt you. Listen to your doctors. You have three weeks I believe? Taking Epclusa after 16 weeks of Vosevi when your labs say cured is not only not needed but could be harmful. First, these DAAs are powerful drugs with side effects. Second, there is no more effective DAA than Vosevi at this time. If you still have a few HCV virus in hiding going back to the less potent Epclusa could conceivably cause the virus to mutate which is the last thing you want. I fully expect your doctors to tell you 16 weeks of Vosevi is all you need, take a rest, then get a viral load at 12 weeks after end of treatment to confirm you are cured. I believe you are genotype 1b and treatment experienced with a previous NS5A inhibitor so the AASLD guidelines call for 12 weeks Vosevi.
I don't know of any trial for that. Most people stop at the end of their prescribed treatment plan.
The protocols are designed get to Sustained Undetected AND/OR <12. That's the finish line. So finish, already.
Thank you again.
How the drugs can affect organs if you take After 4 months of Vosevi tHe Epclusa (Velpanat from Natco)? What they do if there is no virus? Where there trials when people were taking Epclusa for more than 4 months? Was it safe?
Hi Mak and (hello again sleestak!),
Nice to hear from you again sleestak - and very nice you have added some of your past hx here for Mak's benefit and perspective, but I am still curious as to where all your OLD posts and hx live sleestak, your "on-treatment" threads, etc., (that I have inquired after before), but it is nice to at least find out more about you today by your post to Mak.
BTW sleestak - of the few and varied posts you have made, the comments or the material you bring up is often of very good interest - you should post more!
I like your new avatar as well, some dif from the old fighter one!
So Mak, being that you said your extra 4 weeks of Vosevi is coming to an end about Jan 2nd, please let us know what your decision is ... will you or won't you be taking the additional 4 weeks of Epclusa starting Jan 3? You have a lot of people here on the site interested to find out what your decision is going to end up being. Let us know as soon as you will please. Whatever you have decided Mak, I hope it IS the start of some peace for you. C.
Hey Mac
I am totally with you in this dilemma. I know the disappointment of failing a highly anticipated successful treatment with the new DAA's, with the high cure rates toted as being 90+%.
I have to note the unusual frequency of VL testing done in your treatment. If weekly VL testing was applied to everyone I am almost sure we would see fluctuations between Detected, Not Detected. I understand that seeing these fluctuations after being undetected is somewhat alarming and as such, perceive it to be the virus trying to bounce back. Also to note, you were testing at 2 labs correct?
We cannot know for certain why the tests detect low levels of virus. We do not know if they are dead virions, stragglers, or false positive results. It is easy to conclude, especially after relapse on a DAA regimen, that it is virus mutation. The detected <12 result at 9 wks after Undetected at 8 wks, is insignificant in my opinion especially when it was Undetected that same day.
Considering you have already completed a 12 wk course, and now another 16 wk course of even stronger drugs, I would consider the affects on your system.
Most of us do not have the option of taking additional meds. We complete our treatment and whatever will be will be. It is hard for anyone to advise in this circumstance.
That all said, there's a bottle of meds sitting up on that dresser. The decision is yours to make. Weigh everything out, make your choice. Stressing over this is not good either.
I honestly believe you are more than likely cured at this point. Be well!
Hello - no, <12 meant they they were not able to quantify but the virus was still detected
Hey Mak,if I'm reading this right VL<12 is undetected.And a few hours later it said undetected?IMO you need to stop treatment.But,I don't have MD after my name.Good luck.
Tig, please look a few (6) posts down, I am pasting again in this post. I wrote all my treatment history. I have extended 3 months of treatment with Vosevi to 4 months with the Vosevi - I decided to buy 1 additional box of Vosevi myslelf - and now I am thinking to extend with a generic Epclusa that I have got from India, one month more. As I was late responder. I never decided to stop treatment and then try again. If I stop then I stop forever.
I am pasting you again:
2ndTreatmnt geno 1b- Vosevi 12 weeks - SOT Sept 12 2018 to EOT Dec 5 2018. Pre-treatment - VL 1.4 mil, ALT 45, AST __, ALP 69, GGT 90, bilir 16.
2 weeklabs:VL 49, ALT 26, AST __, GGT 53. Bili 21,
4 weeklabs:VL <15, GGT42 other normal
5weeklabs:ALT 17,AST 27, Bili 11.8, ALP 68, GGT 36 ... VL 12,
6weeklabs ALT 19, AST 26, Bili 16,20, GGT35, VL<12
7week GGT34, ALT 19.1 AST 26.4, Bili 17,9 , VL<12
5 Nov Official test undetected
8week (6nov) GGT31, ALT15.6, AST22.4, Bili 16.6, UNDETECTED
15 nov after the beginning of week 10
GGT 27, Bilirubin 23,30High, ALT 16.5, AST 23.7, VL<12
15 Nov a few hours later UND
19 Nov ALT 17.10, ast 26.5, ggt28, bili 17.5, UND
3 DEC 12week ALT20,7. AST24,3, GGT 27, Bili 12,10, UND
I take Vosevi one month more
21 DEC. ALT 28.5 AST 27.4 bili 13, phosphataze 76, GGT 32, UND
Help me out here, Mak. You did 12 weeks of Vosevi, correct? When did you get 4 more weeks of Vosevi? You told me that you got 4 more weeks of Epclusa medication, right? So, what do you have now? This is getting terribly confusing and I'd like to know what you're doing? By now you must have had to make a decision, right? When was (is) your original end of treatment date? Dec. 5th? The one with the 12 weeks of Vosevi? Where did you obtain the extra 4 weeks of Vosevi or Epclusa? Vosevi is very expensive. They don't have Vosevi generic yet, at least not anywhere I've seen. You said you had 4 more weeks of Epclusa, do you still have it? You can't just end treatment with one drug and wait a few weeks and safely decide to start 4 more weeks of anything. That's very unwise, if that's your plan. We can't advise you on any of this. Please discuss it with your doctor.
We need to put a close to this pretty soon. Thank you for your understanding.
I only extended it 4 extra weeks with Vosevi but it was wise as I was undetected late after week 8 and then the virus waa trying to appear for a while.
-- Edited by mcmaklin on Friday 28th of December 2018 02:51:33 PM
Mak,
We have all weighed in on this and nobody is saying to take extend your treatment.
My personal advise is:
Finish your current treatment and stop it.
Happy New HepC Free Year, Mak. I hope it's a good one.
I was presented with a similar decision after failing Sovaldi/Olysio. I retreated with Harvoni /Ribavirin 12wks. I had a choice to do an additional 4 wks of Harvoni but it would have been obtained illegally (Donation from fellow treater who had extra). I decided to stop at 12wks and let the chips fall where they may. I was Undetected since wk 4 of treatment. In hind site, due to the changing guidelines that occurred at the end of my treatment, I would have probably done the extra 4 wks (even illegally obtained). The regimen of Harvoni /Ribavirin 12 wks for retreatment was based on limited evidence and was revised to extend to 24 wks, and later removed altogether for retreating Sofosbuvir/simeprevir failures.
I did acheive SVR 12, 24 on that regimen. I did not have RAV testing. I retreated 1 year from EOT. Unsure of fibrosis score. Ledipasvir is an NS5A inhbitor with a low barrier to resistance.
In your circumstance - non-cirrhotic, GT 1b, No NS5A RAV's, Undetected since week 10, retreating with a regimen with all 3 antivirals with high barrier to resistance, - You have a lot of positive factors going for you. There is no information on treating longer after 16wks of vosevi that I am aware of. I guess I my main consideration would be how the drugs are affecting organs.
If your looking for opinions - my vote is to stop treatment at 16wks of vosevi. Harvoni /Ribavirin12 wks knocked mine down after a DAA failure. Your regimen is by far a more effective regimen than Harvoni. Good luck and Happy New Year with an HCV free life!
Sorry, Mak, I have no information that might answer that question for you. If you want to take it, that’s your choice. You have to decide when enough is enough and go with it. You can’t continue to take this medication forever. We can’t help you make this decision. It’s up to you and your doctor. Finish treatment, wait 12 weeks and test your viral load again. That is what you need to do.
Is there any logical knowledge that says that it would be possible for the virus to come back because I take extra Velpanat After the Vosevi?
Hey Mak,
We don’t have any additional information than we have discussed and provided before. This is a decision you have to make with your doctor. I don’t think there is anything else we can add at this time. If you want to take 4 more weeks of Epclusa, it’s up to you.
I know I am not asking you what to do because I must make decision myself.
But I need PLEASE some more knowledge. Is my thinking right here? Thank you
Mak,
Congratulations on that UNDETECTED! Vosevi does a great job. I trust very much that you will finally have a HepC free life.
Wishing you peace and good health in the New Year.
1. I don’t think taking 4 more weeks of Epclusa will cause any harm, but I’m not a doctor, so I can’t provide a definitive answer. I don’t think it will add any benefit either.
2. The drugs are out of your body in less than one week.
3. The Vosevi trials (Polaris) were 8 and 12 weeks only. Here’s some info on the trials:
Vosevi Trials
With previous drugs I finised and they were surprised that I have relapsed.
So
1.can taking more Sof+Vel make any harm?
2. How long are the drugs in my body when I stop taking them?
3. Were there trialas with 20 weeks or 24 on Sof+Vel or no Sof+Vel+Vox? Where there people who were taking it so long?
-- Edited by mcmaklin on Tuesday 25th of December 2018 06:23:22 PM
Let me use an analogy: If you had been treated for cancer and your doctor said you were cured, would you decide on your own, to continue taking chemotherapy? For what purpose? You have to trust the process. Time to find out if treatment worked and if you’re one of the 98%ers. My money is on your success!
Thank you-
1I understand everything but what bad things can making treatment longer cause?I guess only make the virus even more stronger if it survived.
2. Is there a chance if the virus is hidden somewhere that Sof+Vox only would kill it when I start take less potent drugs?
3. This was very interesting: the drugs are hardcore, heavy duty . That I need to get rid of the system to feel well (I feel well on drugs) - but how long they are going out from the system?
4. Are there any side effects when you stop?
Mak,
You said ... "I know you cannot say more ... I need to make the decision ... I know it will be my decision" ...
You are right Mak, there is no point (or further useful help that we seem to be able to offer you) in asking us the same thing again (about what you should do), we have all already expressed what we can on the subject - this decision IS up to you.
Use your logic and best judgement.
I am sure you will figure out what you are going to do soon, if you have not already made up your mind.
I like your old docs use of the word "peaceful" - you do very much deserve that.
I hope if you are over in Poland you are having a nice visit with family maybe? Either way, whether in UK or not, all your pals here wish you well and happy, and that you do reach your decision and your peaceful place soon! C.
We cannot give you medical advice. We can only pass along what we have learned, studied, and experienced. We can lend support and pass along information. Most of the information we gather comes from medical information available to the public. Lot's of the information comes from the same sources available to our doctors.
No additional DAA will work on a virus that isn't there. I understand you are concerned that there may be some duplicates hiding. As I understand, that is the reason the treatment continues after your wonderful <12/UNDETECTED status, usually 12 weeks. You've had 16 right? So you've already had the big dose. I'm saying that the treatment you have taken has gone on long enough to "make sure" according to todays protocols.
These drugs are hard core, heavy duty. They affect your whole body. As miraculous as they are, you want to get them out of your system too, so that your body can return to normal. That's usually when you start to feel better and better.
So, Mak, I'm going with your doctors. Stop it.
I wish you peace and wonderful health in the new year.
So less potent drug wiill not work if I have no virus for now and if it tries to reapear from body tissues If it is hidden?
will it harm ? If it may help so why not to take it?
Taking a less effective DAA like Epclusa after 16 weeks of Vosevi makes no sense. Follow your doctor's advice and stop DAA treatment after the 16 weeks of Vosevi.
If it were me, I would stop. No doubt about it.
Hey Mak,
You’ve been thinking and over thinking this for too long. One of these days you have to stop treatment and let the cards fall where they will. We can’t make that decision for you. I’m in agreement with your doctor, it’s time to stop. I don’t think the addition of 4 weeks of Epclusa will make any difference, other than extending your EOT date. If I thought it would help, I’d say why not, but I don’t think there’s going to be any additional benefit from it. The rate of success with Vosevi is as high as it gets. Have confidence in that.
Thats Really good news! That UND looks sooo good! Mac after you do your last 4 weeks of vosevi your going to move on to SVR!!!!!! I think your choosing the extra 4 weeks of vosevi was wise and will be the end of your dragon fighting days. With those great numbers you report I dont think the Epclusa is warranted and I would advise you not to take it, theres no need to- You got this dragon in the bag, Its dead and congratulations to you are in order. RC
Hello I did a blood test yesterday.
Here is the history
2ndTreatmnt geno 1b- Vosevi 12 weeks - SOT Sept 12 2018 to EOT Dec 5 2018. Pre-treatment - VL 1.4 mil, ALT 45, AST __, ALP 69, GGT 90, bilir 16.
2 weeklabs:VL 49, ALT 26, AST __, GGT 53. Bili 21,
4 weeklabs:VL <15, GGT42 other normal
5weeklabs:ALT 17,AST 27, Bili 11.8, ALP 68, GGT 36 ... VL 12,
6weeklabs ALT 19, AST 26, Bili 16,20, GGT35, VL<12
7week GGT34, ALT 19.1 AST 26.4, Bili 17,9 , VL<12
5 Nov Official test undetected
8week (6nov) GGT31, ALT15.6, AST22.4, Bili 16.6, UNDETECTED
15 nov after the beginning of week 10
GGT 27, Bilirubin 23,30High, ALT 16.5, AST 23.7, VL<12
15 Nov a few hours later UND
19 Nov ALT 17.10, ast 26.5, ggt28, bili 17.5, UND
3 DEC 12week ALT20,7. AST24,3, GGT 27, Bili 12,10, UND
I take Vosevi one month more
21 DEC. ALT 28.5 AST 27.4 bili 13, phosphataze 76, GGT 32, UND
Re: Your question ... "Can this additional Epclusa do some harm or to cuase that I will not receive the SVR? This is my unaswered question" ... - your docs could not answer this question (fully) for you, because there is not the data on it to back them up in expressing a firm and proven opinion on it, so how can you expect an answer on the same from us?
In a perfect world, (1) you would already know/accept/guess you have no need to do the epclusa and then just wait until your SVR12 to confirm that you are indeed cured, or (2) you will do the epclusa and it may not make one iota of difference as you are already cured, or (3) the docs could not fully answer you as to whether there was (or was not) any good or detrimental effects of taking an additional 4 weeks of the lessor double epcusa as far as effectiveness or resistance (if you are cured now and all you have to do is sustain it, then an additional 4 weeks of the lessor epclusa one would guess would neither be "effective" nor might it "contribute" to resistance.
In a perfect world, you would have unlimited funds and free and easy access to vosevi and if you kept choosing to extend your therapy, then it would be with the same triple and not a lessor double (just on principal of sticking with one triple therapy which is a superior therapy to a double).
Re: Your comment ... "I believe I am cured" ... - your docs are also "guessing" you are cured, I would "guess" you are cured, you "guess" you are cured!. No one will be able to "officially" prove this until SVR12.
You were querying what your doc said from below and you said ... "For me only what is not clear is: At the current stage (no features of virus replication) there is no risk connected to 2 drugs sets /3 drugs sets" ... I think the way your doc worded this, that the meaning(s) could be a little ambivalent, one can take this various ways and in various directions depending on how you read it/interpret it - you would have to ask him if that was what he meant when you thought it suggested "there is nothing more to treat". Again, on the topic of going slower to UND than other people? - you will probably never know if it had carried any potential negative significance, there was (to the contrary of any negative connotation) documentation of successful SVR12 despite longer detected status's. Your first therapy cannot be compared to this one in any way, different circumstances, conditions, variables, but especially because they were different drug treatments and you had different RAVs - maybe one of the biggest cure obstacles you carried was your TT status - who knows!
No idea whether the epclusa would do you any kind of harm, I could not possibly answer. I do guess you are technically very cured, and that further treatment is redundant. C.
Thank you Canuck. I thing they gave the best possible answer. For me only what is not clear is: "At the current stage (no features of virus replication) there is no risk connected to 2 drugs sets /3 drugs sets.
So would it simply mean that there is nothing to treat more. What does "no features of virus replication mean"? So if there is no replication why we are so affraid of what happens when we finish treatment? I know one person (she had Y93h and genotype 1b and F3) that was UND the first month of Exviera/Viekira and the she measured HCV RNA (not quantititve) and the EOT and she was detected again. Then she relapsed. Now she is on Mavyret + Sofosbuvir + Riba (my 2nd doc managed to measure that she is RESISTANT to Valpatasvir!!!, I was suspectible for VELPATASVIR.
I believe I am cured. I am not repeating blood tests for now because it probably simply does not make sense. My concern was only this <12 in the middle of my treatment that turned into UND the same day! (who other was so lucky to have 2 blood tests the same day). Could it be a lab error? So I am thinking of my treatment now, not the previous one which is not important now. I do not carry so great trepidation of prior failure, but only this that on current treatment I reacted quite slow to become UND (whyy?) and this <12 at 3/4 of my planned treatment after being UND.
I do not know if I take Epclusa after the 1st of Jan. it also seems to me that an additional month on Vosevi is a lot. Can this additional Epclusa do some harm or to cuase that I will not receive the SVR? This is my unaswered question. And thank you again for your help.
In my book vosevi is the best, I was just plain very lucky to even be able to get my vosevi. I only got my vosevi because i was fortunate enough to win my way into one of the last seats left in one of last vosevi trials. I only got 8 weeks of vosevi in my arm of the trial because I had no choice about which arm of the trial I got in to, thus how long the course length was going to be. I considered myself very lucky just to get into the trial, period, and to get my 8 weeks of therapy! But, if I had had a choice, i would have chosen an arm that had a longer vosevi course. Now that vosevi is in use, of course everyone is rx'd 12 weeks.
Please note the key words I used (in my comment that you were asking about) ..." if I had a choice" ...
If I put myself in your shoes and carried great trepidation about a prior failure, I too would be fighting fears and wanting the best possible treatment for myself - i think you have already achieved this (the best treatment, in spades!) by doing not just the 12 weeks of vosevi, but by doing a total of 16 weeks for good measure!
Lets just say ... if I had ever decided i had wanted to extend my vosevi treatment (for some reason), then NEVER/EVER would I have been able to afford buying my own "extra" 4 weeks of vosevi, period, that would have been impossible, circumstantially at that time, and financially and logistically - if I had suffered from severe fear of failure i might have felt strongly compelled to wish for an extra 4 weeks of vosevi, for "assurance" purposes - but because of the circumstances then, I would never be able to swing it, me buying extra vosevi would have never happened - I "would not have had a choice".
Pretend I could have obtained extra vosevi and could have afforded to buy it, and further more, that I could also do this to get epclusa as well! (then I "would have had a choice") - in that case, with this "choice" presented to me, i would have always chosen to extend with the vosevi triple versus switching over to the epclusa double, as the vosevi triple has simply been shown to be is superior to a double in various ways.
Re-read what your docs have communicated with you, about how there is NO data to support one theory, one way or the other, i.e. how he answered your questions about "benefit and harm, including resistance" .
Your docs (and us here) would find it difficult trying to answer some of these hypotheticals you bring forward, about what "might" happen or not happen and how and why - if prior data about it is NOT there to refer to and rely on. Some questions just will never have simple straight-forward answers or at least any easy answers!
Were you satisfied with what your docs communicated to you? Are you thinking you will be doing the epclusa then? C.
In my book vosevi is the best, I was just plain very lucky to even be able to get my vosevi. I only got my vosevi because i was fortunate enough to win my way into one of the last seats left in one of last vosevi trials. I only got 8 weeks of vosevi in my arm of the trial because I had no choice about which arm of the trial I got in to, thus how long the course length was going to be. I considered myself very lucky just to get into the trial, period, and to get my 8 weeks of therapy! But, if I had had a choice, i would have chosen an arm that had a longer vosevi course. Now that vosevi is in use, of course everyone is rx'd 12 weeks.
Please note the key words I used (in my comment that you were asking about) ..." if I had a choice" ...
If I put myself in your shoes and carried great trepidation about a prior failure, I too would be fighting fears and wanting the best possible treatment for myself - i think you have already achieved this (the best treatment, in spades!) by doing not just the 12 weeks of vosevi, but by doing a total of 16 weeks for good measure!
Lets just say ... if I had ever decided i had wanted to extend my vosevi treatment (for some reason), then NEVER/EVER would I have been able to afford buying my own "extra" 4 weeks of vosevi, period, that would have been impossible, circumstantially at that time, and financially and logistically - if I had suffered from severe fear of failure i might have felt strongly compelled to wish for an extra 4 weeks of vosevi, for "assurance" purposes - but because of the circumstances then, I would never be able to swing it, me buying extra vosevi would have never happened - I "would not have had a choice".
Pretend I could have obtained extra vosevi and could have afforded to buy it, and further more, that I could also do this to get epclusa as well! (then I "would have had a choice") - in that case, with this "choice" presented to me, i would have always chosen to extend with the vosevi triple versus switching over to the epclusa double, as the vosevi triple has simply been shown to be is superior to a double in various ways.
Re-read what your docs have communicated with you, about how there is NO data to support one theory, one way or the other, i.e. how he answered your questions about "benefit and harm, including resistance" .
Your docs (and us here) would find it difficult trying to answer some of these hypotheticals you bring forward, about what "might" happen or not happen and how and why - if prior data about it is NOT there to refer to and rely on. Some questions just will never have simple straight-forward answers or at least any easy answers!
Were you satisfied with what your docs communicated to you? Are you thinking you will be doing the epclusa then? C.
Thank you again. I will not be asking anymore, only pleae tell me why? In your opinion:
"Personally, all I can say is (that if i had a choice) i just wouldn't want to be taking an extention of a lesser drug if i had been on a better one (a downgrade)"
Mak,
Like I said earlier today - i have a feeling you are leaning toward taking the extra epclusa anyway, even if you are not outright saying that is how you are really feeling about it. So, I don't really know why we are still hashing out all these possible nuances - I am just going by your fear-based decisions and therefore guessing that you probably WILL take the epclusa, and also because neither of your doctors told you that you could NOT.
Your docs DID already answer quite a few of your questions regarding any possible good or bad that might occur if you did take another 4 weeks of a double (epclusa) - your docs cannot possible answer you more definitively if there is NO known data to prove or disprove what is good or not! Neither can we here be guessing, when there is no data to refer to.
Personally, all I can say is (that if i had a choice) i just wouldn't want to be taking an extention of a lesser drug if i had been on a better one (a downgrade), but, i really have no idea how anything could work out if you did - just listen to what your docs have spelled out to you and make your decision. C.
It was gone w on my previous treatment so how to came back!?
Once again:
There are 3 drugs ABC that stop the virus to multiply. The immune system is able to kill the virus because d is not able to multiply.
When you stop the treatment if there is any the immune system will be able
to kill it or not.
The virus can't come back if it's gone.
As I understand, you continue to be undetected.
Are any of your doctors recommending that you continue? As Tig asked, when do you stop if undetected is not enough? At some point you have to stop. At some point, you have to conquer you fears. Believe me, we've all had them!
I'm sorry this is so difficult. It's a big process. You will find great relief when you reach the end, and can go on to enjoy a cure.
Hang in there, Mak. You are almost finished with a well prescribed protocol.
Hello, Thank you, I am not goint to take it so long. Maybe the Epclusa a month more. It has no side effects, sometime it gives me dhiarea, or maybe a bit tiredenss, but this tiredess is nothing comaring to living with a virus, when I was much more tired!
This was important for me: At the current stage (no features of virus replication) there is no risk connected to 2 drugs sets /3 drugs sets.
So I am trying to understand how it is - does it make sense to take the Epclusa or it may do anyting worse, than it would be better just finish when I run out of the Vosevi.
What can additional Epclusa reassure me? Will Epclusa give me a better chance that the virus does not come back OR it may do worse things as there is a less potent drug so can mutate the virus if it exists? Fool the imune system a bad way? Simple: CAN ADDITIONAL EPCLUSA less potent drugs do wrose than not taking any drugs at all. What can this time-frame treatment without Voxilaprevir do?
Very good Mak, that you have been communicating with both your docs on this subject (of whether you should or need to further prolong your treatment, with yet another month, but on epclusa versus vosevi).
As I read the words you relay from them, it would appear they are both leaving this "taking of 4 weeks of epclusa" decision up to you. I defer to them, and to you for what you finally decide.
We can all read between the lines here (in what both the docs have stated, and what your concerns are), the unknowns, the what if's, whether all this treatment is overkill, whether overtreatment could hold potential sides, but ultimately both these docs have left this in your hands for the decision. The decision is yours. I think you likely WILL take the epclusa (1) because you have it sitting on the shelf ready and waiting (2) because no doctor told you NOT to (3) becasue you wish to insure yourslef as best as you can that you are cured this time. While you are on therapy, just the act of taking the pills themsleves is reassuring to a degree, especially so when we have been very unnerved/frightened by a prior failure. Prior failures are hard to deal with. It is hard to remain feeling confident and assured that you are cured this time. I am betting, even if you take the 4 weeks of epclusa, you will still be fretting until your SVR12.
Personally, i certainly guess you are well-cured - BUT no can really say so, can they, until you have sustained your UND to SVR12 and beyond. If you end your vosevi on Jan 2, you will not know the results of your SVR until about the end of March! If you take another 4 weeks of epclusa, you will not know your SVR12 until the end of April!
Keep us posted how you are doing, feeling and what you are thinking your decision will be - are you satisfied with what your docs have said to you?
C.
oh yes, Robert is quite the trouper, an inspiration indeed.
It's looking good Mcmaklin! Keeping fingers crossed for you! Huzzah!
Bb, Iris
And more this is from my other second doctor:t These drugs are very safe and for sure taking them is not connected with any toxic symptoms. At the current stage (no features of virus replication) there is no risk connected to 2 drugs sets /3 drugs sets. I think making treatment longer is not necessary as this 16 weeks should be absolutely enough. But if you have doubts eating additional drugs should not have any negative symptoms.
I will be speaking to my doctor about it. I am thinking of taking Generic Vox+Vel as month 5.
I got the message from professor Geoff D. that I was privately before. This is what he wrote me.
I personally do not understand what is the risk here. I am the persons who maybe has less drugs level in blood than other people this is why I react slower. I have no side effects, so maybe this the confirmation. My generic drugs are already on. the Shelf.
When I stop SOF+Vel+Vox after month 4 if there is anything left in my liver it could potentially get up unless viruses are able to multiply. When this is a case my immune system cannot do anything and I can relapse.
When I start month 5 with Sof+Vel ONLY if there is anything left drugs will inhibit the virus to multiply and my immune system will kill the rest, or at least there is a better chance it will than when I do not take any drugs at all
When I start month 5 with Sof+Vel and there is no virus there will be no virus whenever I take drugs or not.
So why it is so bad idea to take more if I can?
On previous therapies with interferon there has been told that you must try to take drugs for 42 weeks more after you are Undetected.
This is a message:
Oh yes, I see, Iris. I was following the title of the post. No criticism intended, please know. Yes, Robert does have a great attitude, doesn't he?
Hope you feel better soon.
Mak,
We can’t advise you on whether to take the remaining Epclusa or not. I’m of the mind that you are clear of the virus as the result of 12 weeks of Vosevi. Talk to your doctor and make an educated decision. Experimenting with different drugs, protocols and manufacturers, is not the best of choices in my opinion.
You can’t continue to take these powerful drugs forever. At some point you have to end treatment and wait until week +12 to find out. If you relapse after everything you’ve done to date, you will have no choice but to repeat a longer course of Vosevi. We all were anxious during that wait, but we all conquered our fears and Dragons! So will you...
-- Edited by mcmaklin on Sunday 9th of December 2018 05:10:20 PM
Mac, I was also a slow responder to VOSEVI, and I too ended up taking Vosevi for 16 weeks and I am cured. 16 weeks will also cure you. You should not take the Epclusa with out your doctors recommendation. I know how it feels to fail previous treatments, but the new DAAs are so good,especially vosevi.Dont let those past failures controll your current treatment. Do your 16 weeks and know your going to be cured. RC
Mak,
Yes, taking the Epclusa "just in case" after finishing 16 weeks of Vosevi could hurt you. Listen to your doctors. You have three weeks I believe? Taking Epclusa after 16 weeks of Vosevi when your labs say cured is not only not needed but could be harmful. First, these DAAs are powerful drugs with side effects. Second, there is no more effective DAA than Vosevi at this time. If you still have a few HCV virus in hiding going back to the less potent Epclusa could conceivably cause the virus to mutate which is the last thing you want. I fully expect your doctors to tell you 16 weeks of Vosevi is all you need, take a rest, then get a viral load at 12 weeks after end of treatment to confirm you are cured. I believe you are genotype 1b and treatment experienced with a previous NS5A inhibitor so the AASLD guidelines call for 12 weeks Vosevi.