Great news. All finished your Mav!! Congrats - and your EOT ALT (now 10) from prior 53, and your AST (now 17) from prior 48, are indeed beauties and herald that UND result you are waiting for.
I hope the PCR lab returns soon for you. That WAS a long wait you had (with NO VL draw, nor LFT's during your 8 week treatment)! I wish they would not do that, I like to see people getting testing 4 weeks in to their therapy (or in your case 1/2 way through treatment, but, even though your arm was willing your doc was not!
I do find it even odder still, of him, that he seemed relucatant to do LFT's with this EOT VL that you just had done!! Weird in my books. But VERY good you specifically requested them to be done.
Do the same for your next set of follow-up labs (which should be aprox 3 months) REQUEST LFT's along with your VL (if he again seems to want to leave them out) - your "official" SVR is normally done at EOT+12 weeks, (generally not at EOT+16 weeks ).
Humph, what kind of budget is your doc on?!
Nevermind, just keep advocating for yourself, and do ask for GOOD follow-up and care (in all and any of your health matters in future).
Great news - can't wait to see you post your first UND! C.
-- Edited by Canuck on Friday 23rd of February 2018 02:30:54 AM
mpls said
Feb 23, 2018
I finished my 8 weeks of Mavyret on Tuesday this week. My blood draw was Wednesday. No PCR results yet, they said Monday or Tuesday, but ill check my chart tomorrow. My ALT was 10 and AST 17. It's the first time in years that they are in normal range. Whooo Hooo! My doctor wasn't even going to check my ALT & AST, I had to ask him. They want to see my SVR in 4 months. He said if I'm clear after 3 months that i probably will be cleared for good. They still don't have much data on the success rate, because it's new. They did remind me that it's not 100% effective. I will post my results as soon as i know. Thanks for all your knowledge and support!!! Be back soon!
-- Edited by mpls on Friday 23rd of February 2018 01:42:34 AM
-- Edited by mpls on Friday 23rd of February 2018 02:00:21 AM
Tig said
Jan 29, 2018
Thanks for the positive update! Everything sounds very good and you’re right, you still have to finish treatment, regardless of a week 4 viral load test. When treatment lengths exceeded 3+ months, there have been requirements (in some cases) to assure a desired or expected viral response. Those tests can be expensive and many providers have chosen to delay them until EOT+12! That would drive me nuttier than I already am. Just knowing the response is as expected at the end of treatment is a nice morale boost. You’ll see!
Stay hydrated! Other than compliance, it’s one of the most important things you can do during treatment.
mpls said
Jan 29, 2018
Hello -- I'm checking in at the end of week 5 on Mavyret. I am doing Great!!
I have experienced a few very very mild headaches, nausea and tiredness only 2-3 days, but the sides are gone now. Not even worth mentioning. I have gained a few pounds and find myself very hungry, which is ok, because, from what I've read, Mavyret goes well with food, so not too worried about that either.
I'm over the shock of "no side effects", due to the reason that I've read so much about the old treatments with Interferon, Ribavirin, Talaprevir, and others, that i thought their would be something. Having said that, I'm so GRATEFUL that this is happening. Also, there is a little doubt in my mind that it's not going to work. I shouldn't think that way, again, the old treatments had a 50/50 chance of clearing the virus. So, i must remove those thoughts from my head. I'm not thinking negatively, but i researched those old drugs many times and read so much about them.
These new medications are working. I feel very positive and hopeful about these new DAA's. People are clearing the virus at 4-6 weeks. It's amazing and wonderful. I did speak to my doctor's office and he is really set on checking my labs at the end of treatment, (8 weeks), and that's fine, i have to practice a little patience and I figure even if i did check at 4 weeks and even if I did clear the virus, i still have to finish the 8 week course. It's all good!
I will be done at the end of February and i definitely will be back to share my results!!
Thanks for being here everyone, its so helpful to read other posts and hear how people are doing!!
Canuck said
Jan 29, 2018
Hey mpls,
How are you, and how are you doing? We need an update. Fret about ya otherwise! I am betting you are doing really well.
Let us know if you had any bloods draws, or have seen the doc, and anything else you want to share. We would be all ears.
Hope you feeling and doing good.
We are really benefiting here from the all the info our cluster of Mav'ers are sharing, between you and Waffle, Angel, Dandelion and RLS checking in.
If my date-figuring is right you were 4 weeks done (out of 8) on Jan 24? Did you decide to ask for labs earlier than EOT?
Keep treating yourself as good as gold. Keep us posted when you can. C.
mpls said
Jan 13, 2018
Hi Canuck -- I thought i would wait and see until I'm in my 4th week. If I feel that i "need to know my results", then I will call or email my doctor. I was told initially that he likes to wait until the end of 8 weeks. Maybe i can wait too. I'll Keep you posted. I hope my fellow Mavret takers will post their results and check in with us.
Canuck said
Jan 13, 2018
Great report mpls!
I agree with you - it is alright, "that's OK" to let the workouts slide for a bit. You're busy, taking care of things! All will work out in the end. Like Tig says, keep taking very good care of yourself, keep on the water, good food and sleep. Sure happy for you that you feel as good as you do - such a relief, to find out that "sides" are not there, as one might have been fearful of eh? C.
What did you think of my prior post pushing you to ask for a 4 week VL? Given that idea any consideration?
Tig said
Jan 11, 2018
That qualifies as a very good update! You have a couple of folks behind you, so firsthand knowledge like this is music to our ears. When do they have you scheduled for blood testing? Each doctor can have a different schedule. When you get some results, please let us know how you’re doing. I’m sure you’ll be very impressed with your progress!
PS: Don’t beat yourself up over the gym! Everything will continue to improve and you’ll get back into your routine. Right now, concentrate on staying healthy, eating right and continue to hydrate. Staying active is good, but save some energy for dragon slaying!
mpls said
Jan 11, 2018
Good morning -- "No news is good news"
Starting on my 3rd week on Mayvret. Feeling great. I take my pills at 11 AM every day with food. I read somewhere that the medication peaks at 5 hours and i feel great that time of day. I'm finally getting over the shock that there are no side effects. Everyday i am amazed how good i feel. I work part time and and I'm able to work an 8 hour shift without any problems. I do feel lazy when it comes to getting to the gym. I have worked out my whole life, 2-3 times per week, but i'm struggling getting to the gym... that's okay. I am feeling very grateful to finally have the opportunity to get on this medication.
I'm thinking of all of you on treatment and wishing positive outcomes for all!!!
Canuck said
Jan 4, 2018
mpls,
Hm, I hate that, when docs won't/don't do a PCR (VL) at 4 weeks. I wish they would always do so - don't they realize we want/need that feedback!
If I were you, I would implore him (her/them/whatever) to please let you have an order for a PCR VL and liver panel done, at the 4 week mark at the latest (aside from the bloods they said you would get at EOT).
Don't be afraid to ask, you have nothing to lose for asking, and everything to gain ... worst they can do is say no.
Do you happen to have an appointment scheduled to go in an see them before the end of week 4 anyway?? If you do, or even if you do not, that does not stop you from phoning now, to start asking ask for this 4 week PCR and liver panel to be ordered/done. Even if you have to make an extra unplanned appointment, to go in and ask for a week 4 PCR VL and liver panel to be done "in person", then so be it.
It does no harm to request these tests to please be done at 4 weeks.
Surely, they can understand, you are wanting and needing to see how you are doing in response to the drugs.
It happens, that people are made to wait to the end, not so much nowadays, quite a few of the docs do do PCR VL's and a liver panel at 4 weeks.
Bugs me when they don't do them at 4 weeks! hmph C.
Canuck said
Jan 1, 2018
Hey mpls,
So glad you checked in. Sounds as though you are doing well! Good for you!
Yes, we are so lucky to be getting the likes of these new DAA's (like Mav). It was not so very long ago that our choices were limited, some drugs hard to take and with not the great results we now witness. It IS a whole new DAA world, thanks to all the brilliant behind-the-scenes-sciencey-folk who work with companies like Abby, Gilead. I thank my lucky stars, everyday, for Gileads gift to me.
Hear ya about the "jittery" and spacey thing, I was on dif drugs than you, but I had some of that too, it was a curious feeling. But, I was also having fatigue bigtime (prior to starting) and that fugue state (that I was already in) did not really "let up", for a long time, so being a "slug" coupled with some jitteriness at the same time while on treatment, that did feel weird. I did not feel too emotional tho, I was too tired for that I think, and just so relieved I was finally on the very best drugs I could possibly get, I just waited for the good outcome.
I am hoping that what you notice now, will pass for you, that can happen, over time. While you are on these drugs (after the first week, maybe a couple weeks, or so) you may notice things you first associated with the drugs, lessen. People noticing "something" can often decrease/dissipate. In my case I have no idea, really, if I just got used to that weird jitteriness quality, and thereby just noticed it less. I was "spaced out" to start with (prior to treatment), so what with me "coming with" fatigue and fugue, I did not feel the meds improved that part for me while I was on them - BUT, others have felt improvement, really quite AMAZINGLY quickly. Testimonials on this site, where people could hardly believe they felt "nothing" from the drugs, OR, that they shockingly realized they might actually be starting to feeling better quite quickly!
Wait and see. Give it another week or so, and see what kind of a routine you fall into. Approaching treatment, starting treatment is a step into the unknown for some of us, unfamiliar territory, it can be unnerving to say the least, if not a stress-fraught time. Fear could be the worst burden (or really, your only enemy) to add to first starting treatment, it's all just so new, who can blame us for not welcoming the unknown. But, knowing that you are armed with some of the very best drugs in the whole darn world, this fact alone should make you giddy with bravery indeed! The ultimate armour!
It sounds like you planned your start for treatment well, some time off with 6 days of the drugs under your belt to know how it may feel for you, before you are back at work - just play it by ear. I have a feeling you are going to be just fine.
Do, be sure to treat yourself with the utmost tender loving care tho, drink water all the time (even if it IS inconvenient)!, be sure to eat well, strive to get lots of rest and a little healthy activity, little fresh air walks, or whatever makes you feel better. Nurture yourself while you are going through treatment. Should you feel you need to (or can) take some days off work, then do so.
What time of day did you chose to take your drugs?
Great you got your sig. line going!! - good you put your VL in there, don't forget to add your GT1b (and/or anything else you want to as you go along).
You are the same age as me, we both contracted HCV long ago. Me, I thought it was "just" a case of Hep B I got back in the 70's, didn't find out til 2015, that I had been packing Hep C all that time! Better late than never - any day (or decade) we start on our cures, is a very good day! C.
-- Edited by Canuck on Tuesday 2nd of January 2018 12:00:15 AM
Tig said
Jan 1, 2018
It’s not uncommon to feel something weird following administration. It has been discussed so many times here and it’s not just Mavyret. These are powerful medications, even though the side effects are almost nothing. Far better than the old Interferon and a Ribavirin days. You’re blessed to have these blockbuster drugs available now. Very effective and I’m confident that you’ll be successful. You will hopefully notice less of those post pill effects after you have adjusted to the drugs. Your body will get more accustomed to those effects and it won’t bother you as much. Fingers crossed!
One more thing, don’t forget to hydrate properly! One gallon per day, without fail! That more than anything will reduce those side effects.
I’m very aware of the stigma. It has gotten better, but it definitely continues in some minds. You don’t have to discuss it with anyone. I chose to tell a few select people about it in the beginning, but now I talk about it when it comes up in a conversation. Once you are cured of it, the thing I noticed right away was a sense of relief. It was like stepping out of a bad dream or shedding your skin. Dragon skin! You’re gonna like it!
mpls said
Jan 1, 2018
Hey there, checking in here on Day 6 on Mavyret. I feel pretty good. Canuck, i did read NRA4ever's posts and was so happy to see he checked in to let us know that he continues to be undetected after 1 year, that leaves me feeling very hopeful... I have not had any side effects, except, right after i take it, i feel a little jittery, emotional and spacey for the 1st 30 minutes-1 hour. It's my 1st day back to work today since I started Mavyret. I work 2:30-11 PM. I'm thinking that I will be fine at work. I was so worried about being able to work on tx, because, of course, i have not shared with anyone at work that i have HCV, as I am sure many of you can relate to the stigma... Happy New Year to all of you!! There's a cure now after waiting many many years!! Yay for us!
Canuck said
Dec 31, 2017
Hi mpls,
Can I suggest something like this for a signature line for you? Sig. lines just make it easier to recall important details at a glance, and helps in conversations. Sig. lines can always be changed and/or added to as you go along.
... Age, Sex, GT 1b, HCV aprox. 40 years, diagnosed (date). Pre-treatment labs: (Date) ALT/AST both aprox. <50, VL _____ aprox. "low", (Date) fibroscan shows F score _____ aprox. "little scarring". TN. Mavyret 8 weeks - SOT Dec 27, 2017, EOT Feb ____, 2018 ...
If you have any trouble figuring out how to do a sig. line, see the link for it, below Tigs own sig line.
Good you confirmed your planned course of Mav is 8 weeks versus 12.
So, that is great that you have not felt anything bad from being on Mav so far. Do drink lots of water! What time of day did you decide to take your medication? Are you consuming it with some food?
How have you felt, how has your health been, all in all, in the past decades leading up to your now treatment?
I do hope we can rustle up some other long-cured Mav-doer names for ya - Skimily has not posted back for a long time, and NRA4ever has subsequently, periodically returned to say he is still doing just great. If you managed to slog through bits of his thread, you will see with what GREAT trepidation he approached the drugs in his trial, only to be competely surprized that NOTHING bad happened, only good. Skimily and NRA4ever are 2 success stories. C.
robertsamx said
Dec 30, 2017
Hi MPLS, Your LFT?s are all low considering 40 years of the virus. And it also sounds like your liver is in good shape. 1b responds really well to treatment! Abbvie finished up the phase 3 trials on Mavyret in 2016 . I was offered a spot in that trial and was also offered a spot on Gileads Polaris trials, and I chose Gilead Polaris- and it gets really complicated from there on. I couldent beleave that I had two trial offers at the same time. TIG may post the links to the trials on Mavyret in this thread. 8 weeks wil go by so fast, your not going to beleave how fast it went by when you get to EOT. Stay in touch- RC
mpls said
Dec 30, 2017
Good to hear from everybody. Thanks for the tips and links. I've been searching the web looking for anyone else who has started Mayvret. Norwegian Waffle, it's nice to meet you. We can compare notes. I will be on Mavyret for 8 weeks, apparently my virus levels are low, and the fibroscan indicated very little to no scaring, my ALT and AST were both <50. I have had HCV for 40 years. I work part time and have health insurance. I'm hoping I have no side effects so i can keep working. Since this medication is different than Harvoni, i have been looking for information on the people (probably from the clinical trials) who have been cleared of HCV after a year after Mavyret treatment. Thank you all for your support.
NorwegianWaffle said
Dec 30, 2017
I had an ultrasound...i want to say they said it was a 3....or really good which was another reason they were not keen on epclusa. I just threw all my papers away (life changes) but they should be calling me to make sure all is well and I will jot the info. down and put it in my bio.
-- Edited by NorwegianWaffle on Saturday 30th of December 2017 02:55:44 PM
Canuck said
Dec 30, 2017
Hey NW!
Congrats on your start! First pill past the lips, and on to the cure! Don't be nervous. Drink lots of water. Nice you reply here where another (mpls) started her "On Treatment" thread. You too are officially "On Treatment" now! Nice you and mpls will be able to compare notes! Both of your starts so close together!
I guess we will all find out from your 4 week blood draw whether you end up being on Mav for 8 weeks or 12 eh? Did you ever answer about where your liver fibrosis is at? Whether you ever had an abd. ultrasound, what your most recent blood "fibrotest" result was, or if you ever had a "fibroSCAN" to indicate your degree of fibrosis? Do you know your Fscore?
This will be my new years toast to both you and mpls! C.
Canuck said
Dec 30, 2017
Hey there mpls,
Welcome here. Nice to meet you. Glad you've got your Mavyret start underway! Yes, we have had others on Mav, and about to start, and/or are waiting to find out when they might be able to start.
Great Tig has directed you to another new member (Norwegian Waffle) who is about to start her Mav (she also started a thread with the same title as yours!)
If you put "Mavyret" in the search box (above) you should be able to pull up various MAV related info and threads.
Quite a while ago we had two people on Mav trials, when Abby was still calling their Mav product "ABT493/530", they were "Skimily" and "NRA4ever", they were posting in this other long thread back then - Abbvie ABT 493- ABT 530 .
There is also some Mav history here - Abby's - Pan 8 week Glec/Pib - the beginning of this thread spells out the evolution of Mav coming to market.
Is your length of treatment 12 weeks then? How have you and your liver been doing up to arriving at treatment? Like Tig advised, drink lots of water! and fire away if you have any questions. C.
NorwegianWaffle said
Dec 29, 2017
Took my first dose about 30 minutes ago!
Tig said
Dec 29, 2017
Hello and welcome to the forum! Glad you’re here and really happy to hear you have started treatment. You’re going to do great, this is one of the newest blockbusters available and it is very effective.
We have some members either just starting or getting ready to start Mavyret. I’ll include a link to the other thread. >>HERE<<
Remember to drink at least a gallon of water everyday, WITHOUT FAIL! Your body will thank you for it. It’s a very important part of treatment with these new DAA’s. They dehydrate you without even knowing it. If you have any questions, don’t hesitate to ask. Others will be along soon to say hi. Good luck to you!
mpls said
Dec 29, 2017
I started Mavyret 3 days ago. I've had hep c for 40 years, treatment naive, Genotype 1b. So far so good, not one side effect. Is there anyone else out there who is on it and/or completed it?
Hey mpls,
Great news. All finished your Mav!! Congrats - and your EOT ALT (now 10) from prior 53, and your AST (now 17) from prior 48, are indeed beauties and herald that UND result you are waiting for.
I hope the PCR lab returns soon for you. That WAS a long wait you had (with NO VL draw, nor LFT's during your 8 week treatment)! I wish they would not do that, I like to see people getting testing 4 weeks in to their therapy (or in your case 1/2 way through treatment, but, even though your arm was willing your doc was not!
I do find it even odder still, of him, that he seemed relucatant to do LFT's with this EOT VL that you just had done!!
Weird in my books. But VERY good you specifically requested them to be done.
Do the same for your next set of follow-up labs (which should be aprox 3 months) REQUEST LFT's along with your VL (if he again seems to want to leave them out) - your "official" SVR is normally done at EOT+12 weeks, (generally not at EOT+16 weeks
).
Humph, what kind of budget is your doc on?!
Nevermind, just keep advocating for yourself, and do ask for GOOD follow-up and care (in all and any of your health matters in future).
Great news - can't wait to see you post your first UND!
C.
-- Edited by Canuck on Friday 23rd of February 2018 02:30:54 AM
I finished my 8 weeks of Mavyret on Tuesday this week. My blood draw was Wednesday. No PCR results yet, they said Monday or Tuesday, but ill check my chart tomorrow. My ALT was 10 and AST 17. It's the first time in years that they are in normal range. Whooo Hooo! My doctor wasn't even going to check my ALT & AST, I had to ask him. They want to see my SVR in 4 months. He said if I'm clear after 3 months that i probably will be cleared for good. They still don't have much data on the success rate, because it's new. They did remind me that it's not 100% effective. I will post my results as soon as i know. Thanks for all your knowledge and support!!! Be back soon!
-- Edited by mpls on Friday 23rd of February 2018 01:42:34 AM
-- Edited by mpls on Friday 23rd of February 2018 02:00:21 AM
Thanks for the positive update! Everything sounds very good and you’re right, you still have to finish treatment, regardless of a week 4 viral load test. When treatment lengths exceeded 3+ months, there have been requirements (in some cases) to assure a desired or expected viral response. Those tests can be expensive and many providers have chosen to delay them until EOT+12! That would drive me nuttier than I already am. Just knowing the response is as expected at the end of treatment is a nice morale boost. You’ll see!
Stay hydrated! Other than compliance, it’s one of the most important things you can do during treatment.
Hello -- I'm checking in at the end of week 5 on Mavyret. I am doing Great!!
I have experienced a few very very mild headaches, nausea and tiredness only 2-3 days, but the sides are gone now. Not even worth mentioning. I have gained a few pounds and find myself very hungry, which is ok, because, from what I've read, Mavyret goes well with food, so not too worried about that either.
I'm over the shock of "no side effects", due to the reason that I've read so much about the old treatments with Interferon, Ribavirin, Talaprevir, and others, that i thought their would be something. Having said that, I'm so GRATEFUL that this is happening. Also, there is a little doubt in my mind that it's not going to work. I shouldn't think that way, again, the old treatments had a 50/50 chance of clearing the virus. So, i must remove those thoughts from my head. I'm not thinking negatively, but i researched those old drugs many times and read so much about them.
These new medications are working. I feel very positive and hopeful about these new DAA's. People are clearing the virus at 4-6 weeks. It's amazing and wonderful. I did speak to my doctor's office and he is really set on checking my labs at the end of treatment, (8 weeks), and that's fine, i have to practice a little patience and I figure even if i did check at 4 weeks and even if I did clear the virus, i still have to finish the 8 week course. It's all good!
I will be done at the end of February and i definitely will be back to share my results!!
Thanks for being here everyone, its so helpful to read other posts and hear how people are doing!!
Hey mpls,
How are you, and how are you doing? We need an update. Fret about ya otherwise! I am betting you are doing really well.
Let us know if you had any bloods draws, or have seen the doc, and anything else you want to share. We would be all ears.
Hope you feeling and doing good.
We are really benefiting here from the all the info our cluster of Mav'ers are sharing, between you and Waffle, Angel, Dandelion and RLS checking in.
If my date-figuring is right you were 4 weeks done (out of 8) on Jan 24? Did you decide to ask for labs earlier than EOT?
Keep treating yourself as good as gold. Keep us posted when you can.
C.
Hi Canuck -- I thought i would wait and see until I'm in my 4th week. If I feel that i "need to know my results", then I will call or email my doctor. I was told initially that he likes to wait until the end of 8 weeks. Maybe i can wait too. I'll Keep you posted. I hope my fellow Mavret takers will post their results and check in with us.
Great report mpls!
I agree with you - it is alright, "that's OK" to let the workouts slide for a bit. You're busy, taking care of things! All will work out in the end. Like Tig says, keep taking very good care of yourself, keep on the water, good food and sleep. Sure happy for you that you feel as good as you do - such a relief, to find out that "sides" are not there, as one might have been fearful of eh?
C.
What did you think of my prior post pushing you to ask for a 4 week VL? Given that idea any consideration?
That qualifies as a very good update! You have a couple of folks behind you, so firsthand knowledge like this is music to our ears. When do they have you scheduled for blood testing? Each doctor can have a different schedule. When you get some results, please let us know how you’re doing. I’m sure you’ll be very impressed with your progress!
PS: Don’t beat yourself up over the gym! Everything will continue to improve and you’ll get back into your routine. Right now, concentrate on staying healthy, eating right and continue to hydrate. Staying active is good, but save some energy for dragon slaying!
Good morning -- "No news is good news"
Starting on my 3rd week on Mayvret. Feeling great. I take my pills at 11 AM every day with food. I read somewhere that the medication peaks at 5 hours and i feel great that time of day. I'm finally getting over the shock that there are no side effects. Everyday i am amazed how good i feel. I work part time and and I'm able to work an 8 hour shift without any problems. I do feel lazy when it comes to getting to the gym. I have worked out my whole life, 2-3 times per week, but i'm struggling getting to the gym... that's okay. I am feeling very grateful to finally have the opportunity to get on this medication.
I'm thinking of all of you on treatment and wishing positive outcomes for all!!!
mpls,
Hm, I hate that, when docs won't/don't do a PCR (VL) at 4 weeks. I wish they would always do so - don't they realize we want/need that feedback!
If I were you, I would implore him (her/them/whatever) to please let you have an order for a PCR VL and liver panel done, at the 4 week mark at the latest (aside from the bloods they said you would get at EOT).
Don't be afraid to ask, you have nothing to lose for asking, and everything to gain ... worst they can do is say no.
Do you happen to have an appointment scheduled to go in an see them before the end of week 4 anyway?? If you do, or even if you do not, that does not stop you from phoning now, to start asking ask for this 4 week PCR and liver panel to be ordered/done. Even if you have to make an extra unplanned appointment, to go in and ask for a week 4 PCR VL and liver panel to be done "in person", then so be it.
It does no harm to request these tests to please be done at 4 weeks.
Surely, they can understand, you are wanting and needing to see how you are doing in response to the drugs.
It happens, that people are made to wait to the end, not so much nowadays, quite a few of the docs do do PCR VL's and a liver panel at 4 weeks.
Bugs me when they don't do them at 4 weeks! hmph C.
Hey mpls,
So glad you checked in. Sounds as though you are doing well! Good for you!
Yes, we are so lucky to be getting the likes of these new DAA's (like Mav). It was not so very long ago that our choices were limited, some drugs hard to take and with not the great results we now witness. It IS a whole new DAA world, thanks to all the brilliant behind-the-scenes-sciencey-folk who work with companies like Abby, Gilead. I thank my lucky stars, everyday, for Gileads gift to me.
Hear ya about the "jittery" and spacey thing, I was on dif drugs than you, but I had some of that too, it was a curious feeling. But, I was also having fatigue bigtime (prior to starting) and that fugue state (that I was already in) did not really "let up", for a long time, so being a "slug" coupled with some jitteriness at the same time while on treatment, that did feel weird. I did not feel too emotional tho, I was too tired for that I think, and just so relieved I was finally on the very best drugs I could possibly get, I just waited for the good outcome.
I am hoping that what you notice now, will pass for you, that can happen, over time. While you are on these drugs (after the first week, maybe a couple weeks, or so) you may notice things you first associated with the drugs, lessen. People noticing "something" can often decrease/dissipate. In my case I have no idea, really, if I just got used to that weird jitteriness quality, and thereby just noticed it less. I was "spaced out" to start with (prior to treatment), so what with me "coming with" fatigue and fugue, I did not feel the meds improved that part for me while I was on them - BUT, others have felt improvement, really quite AMAZINGLY quickly. Testimonials on this site, where people could hardly believe they felt "nothing" from the drugs, OR, that they shockingly realized they might actually be starting to feeling better quite quickly!
Wait and see. Give it another week or so, and see what kind of a routine you fall into. Approaching treatment, starting treatment is a step into the unknown for some of us, unfamiliar territory, it can be unnerving to say the least, if not a stress-fraught time. Fear could be the worst burden (or really, your only enemy) to add to first starting treatment, it's all just so new, who can blame us for not welcoming the unknown. But, knowing that you are armed with some of the very best drugs in the whole darn world, this fact alone should make you giddy with bravery indeed! The ultimate armour!
It sounds like you planned your start for treatment well, some time off with 6 days of the drugs under your belt to know how it may feel for you, before you are back at work - just play it by ear. I have a feeling you are going to be just fine.
Do, be sure to treat yourself with the utmost tender loving care tho, drink water all the time (even if it IS inconvenient)!, be sure to eat well, strive to get lots of rest and a little healthy activity, little fresh air walks, or whatever makes you feel better. Nurture yourself while you are going through treatment. Should you feel you need to (or can) take some days off work, then do so.
What time of day did you chose to take your drugs?
Great you got your sig. line going!!
- good you put your VL in there, don't forget to add your GT1b (and/or anything else you want to as you go along).
You are the same age as me, we both contracted HCV long ago. Me, I thought it was "just" a case of Hep B I got back in the 70's, didn't find out til 2015, that I had been packing Hep C all that time! Better late than never - any day (or decade) we start on our cures, is a very good day! C.
-- Edited by Canuck on Tuesday 2nd of January 2018 12:00:15 AM
It’s not uncommon to feel something weird following administration. It has been discussed so many times here and it’s not just Mavyret. These are powerful medications, even though the side effects are almost nothing. Far better than the old Interferon and a Ribavirin days. You’re blessed to have these blockbuster drugs available now. Very effective and I’m confident that you’ll be successful. You will hopefully notice less of those post pill effects after you have adjusted to the drugs. Your body will get more accustomed to those effects and it won’t bother you as much. Fingers crossed!
One more thing, don’t forget to hydrate properly! One gallon per day, without fail! That more than anything will reduce those side effects.
I’m very aware of the stigma. It has gotten better, but it definitely continues in some minds. You don’t have to discuss it with anyone. I chose to tell a few select people about it in the beginning, but now I talk about it when it comes up in a conversation. Once you are cured of it, the thing I noticed right away was a sense of relief. It was like stepping out of a bad dream or shedding your skin. Dragon skin! You’re gonna like it!
Hey there, checking in here on Day 6 on Mavyret. I feel pretty good. Canuck, i did read NRA4ever's posts and was so happy to see he checked in to let us know that he continues to be undetected after 1 year, that leaves me feeling very hopeful... I have not had any side effects, except, right after i take it, i feel a little jittery, emotional and spacey for the 1st 30 minutes-1 hour. It's my 1st day back to work today since I started Mavyret. I work 2:30-11 PM. I'm thinking that I will be fine at work. I was so worried about being able to work on tx, because, of course, i have not shared with anyone at work that i have HCV, as I am sure many of you can relate to the stigma... Happy New Year to all of you!! There's a cure now after waiting many many years!! Yay for us!
Hi mpls,
Can I suggest something like this for a signature line for you? Sig. lines just make it easier to recall important details at a glance, and helps in conversations. Sig. lines can always be changed and/or added to as you go along.
... Age, Sex, GT 1b, HCV aprox. 40 years, diagnosed (date). Pre-treatment labs: (Date) ALT/AST both aprox. <50, VL _____ aprox. "low", (Date) fibroscan shows F score _____ aprox. "little scarring". TN. Mavyret 8 weeks - SOT Dec 27, 2017, EOT Feb ____, 2018 ...
If you have any trouble figuring out how to do a sig. line, see the link for it, below Tigs own sig line.
Good you confirmed your planned course of Mav is 8 weeks versus 12.
So, that is great that you have not felt anything bad from being on Mav so far. Do drink lots of water! What time of day did you decide to take your medication? Are you consuming it with some food?
How have you felt, how has your health been, all in all, in the past decades leading up to your now treatment?
I do hope we can rustle up some other long-cured Mav-doer names for ya - Skimily has not posted back for a long time, and NRA4ever has subsequently, periodically returned to say he is still doing just great. If you managed to slog through bits of his thread, you will see with what GREAT trepidation he approached the drugs in his trial, only to be competely surprized that NOTHING bad happened, only good. Skimily and NRA4ever are 2 success stories.
C.
Hi MPLS, Your LFT?s are all low considering 40 years of the virus. And it also sounds like your liver is in good shape. 1b responds really well to treatment! Abbvie finished up the phase 3 trials on Mavyret in 2016 . I was offered a spot in that trial and was also offered a spot on Gileads Polaris trials, and I chose Gilead Polaris- and it gets really complicated from there on. I couldent beleave that I had two trial offers at the same time. TIG may post the links to the trials on Mavyret in this thread. 8 weeks wil go by so fast, your not going to beleave how fast it went by when you get to EOT. Stay in touch- RC
Good to hear from everybody. Thanks for the tips and links. I've been searching the web looking for anyone else who has started Mayvret. Norwegian Waffle, it's nice to meet you. We can compare notes. I will be on Mavyret for 8 weeks, apparently my virus levels are low, and the fibroscan indicated very little to no scaring, my ALT and AST were both <50. I have had HCV for 40 years. I work part time and have health insurance. I'm hoping I have no side effects so i can keep working. Since this medication is different than Harvoni, i have been looking for information on the people (probably from the clinical trials) who have been cleared of HCV after a year after Mavyret treatment. Thank you all for your support.
I had an ultrasound...i want to say they said it was a 3....or really good which was another reason they were not keen on epclusa. I just threw all my papers away (life changes) but they should be calling me to make sure all is well and I will jot the info. down and put it in my bio.
-- Edited by NorwegianWaffle on Saturday 30th of December 2017 02:55:44 PM
Hey NW!
Congrats on your start! First pill past the lips, and on to the cure! Don't be nervous. Drink lots of water. Nice you reply here where another (mpls) started her "On Treatment" thread. You too are officially "On Treatment" now!
Nice you and mpls will be able to compare notes! Both of your starts so close together!
I guess we will all find out from your 4 week blood draw whether you end up being on Mav for 8 weeks or 12 eh? Did you ever answer about where your liver fibrosis is at? Whether you ever had an abd. ultrasound, what your most recent blood "fibrotest" result was, or if you ever had a "fibroSCAN" to indicate your degree of fibrosis? Do you know your Fscore?
This will be my new years toast to both you and mpls!
C.
Hey there mpls,
Welcome here. Nice to meet you. Glad you've got your Mavyret start underway!
Yes, we have had others on Mav, and about to start, and/or are waiting to find out when they might be able to start.
Great Tig has directed you to another new member (Norwegian Waffle) who is about to start her Mav (she also started a thread with the same title as yours!)
If you put "Mavyret" in the search box (above) you should be able to pull up various MAV related info and threads.
Quite a while ago we had two people on Mav trials, when Abby was still calling their Mav product "ABT493/530", they were "Skimily" and "NRA4ever", they were posting in this other long thread back then - Abbvie ABT 493- ABT 530 .
There is also some Mav history here - Abby's - Pan 8 week Glec/Pib - the beginning of this thread spells out the evolution of Mav coming to market.
Is your length of treatment 12 weeks then? How have you and your liver been doing up to arriving at treatment? Like Tig advised, drink lots of water! and fire away if you have any questions.
C.
Took my first dose about 30 minutes ago!
Hello and welcome to the forum! Glad you’re here and really happy to hear you have started treatment. You’re going to do great, this is one of the newest blockbusters available and it is very effective.
We have some members either just starting or getting ready to start Mavyret. I’ll include a link to the other thread. >>HERE<<
Remember to drink at least a gallon of water everyday, WITHOUT FAIL! Your body will thank you for it. It’s a very important part of treatment with these new DAA’s. They dehydrate you without even knowing it. If you have any questions, don’t hesitate to ask. Others will be along soon to say hi. Good luck to you!
I started Mavyret 3 days ago. I've had hep c for 40 years, treatment naive, Genotype 1b. So far so good, not one side effect. Is there anyone else out there who is on it and/or completed it?