Hepatitis Forums

Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: LindaBalz on October 29, 2018, 10:26:41 am

Title: Starting Mavyret Treatment Today
Post by: LindaBalz on October 29, 2018, 10:26:41 am
Hey I am starting my treatment today too.....just got back from my Gastro. Going to take it towards the evening before bed. Nervous. hope no side effex. I already have gastro issues, don't need anymore!  ::)
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on October 29, 2018, 12:24:30 pm
Hey Linda,
  Welcome to Club Hep!! Just took My first dose of 16 week Tx. Myself. Settle in and don't worry to much. This is My second treatment after relapsing on Harvoni in 2015. I chose My time as 8:00AM so I could take it at a time reasonable for work week and weekend both. For Me , I chose not to do the evening dosing just in case I had any problems at night. I would rather take off work than to stay up all !LOL!
Looks like We will be Tx. buddies ! Get familiar with the forum and You will find a great bunch of folks here. If You any questions , don't be afraid to ask. There are a lot of sharp cookies in the shadows. Welcome and have a good trip!

                                               Slats
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on October 29, 2018, 01:01:15 pm
I am fortunate bc I don't have to get up, I am retired. But I do have a busy life as one of Jehovahs Witnesses (don't be scared away, lol) and I get to choose whether I need to get up and go preaching or not. My daughter and husb are coming in from Jax Fla and I have a busy weekend planned (hiking, winery) so I hope my rear wont be kicked by side effex. Well, heres to both of us~~may we both be victorious in this fight!
ps Let me know how you are feeling~side effex etc.
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on October 29, 2018, 02:01:31 pm
 Thats' O.K., as long as You don't hold it against Me that I am Catholic!!! ROTFL.
I guess I should apologize ahead of time to You , It seems I don't have much of a filter and lose My religion on a regular basis as well. ??? ::) :P :-[  I will be giving updates as regular as possible , and hope You will as well. This is still a pretty young medicine and there is not a lot out there info wise , except the usual rhetoric and medical mumbo-jumbo pertaining to treatment and side effects. Hope You do well and have a smooth ride!
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on October 29, 2018, 02:26:12 pm
Lol ur funny! Its just that people think we are a cult....couldnt be further from true. Anyway I am also in need of more of a filter or so my husband tells me.
Will check in tomorrow and let yall know how I feel and u and anyone else who wants to do the same.  : 8)
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on October 29, 2018, 08:56:30 pm
 Hey Linda,

   Day one in the books. No problems , a little jittery/speedy feeling about an hour or two in. Felt a tad spacey as well. But all good at this point.

   I forgot to ask You earlier , how long is Your treatment? I will be doing 16 weeks as a Harvoni relapser.

YOU NEED STRONG MEDICINE TO RELIEVE YOUR STRESS! I AM PRESCRIBING A PUPPY!
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on October 30, 2018, 09:14:51 am
HiSlats

Feel the same, but but its the morning after and not going away. Slept well. But still feel weird.
Iam going be on this 12 weeks.
No puppies for me, I am a cat person.
I have a high tolerance to medications, like if  they say take 1 every 3 hrs i will take 3 every 1 hr, lol. J/K. The point is the feeling a med gives me usually goes away fast. Hope this is the same.
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on October 30, 2018, 01:16:31 pm
 Kinda figured the cat thing , just thought I would poke the bear a little as it were! LOL. Just remember , if You need any info. or whatever ( excepting medical advice of course ) there is usually someone lurking or skulking around that will pop up and answer You or point You in the right direction to find out what You need to know. FYI , it usually ain't Me , I am more of the court jester guy that give everyone a laugh or a chuckle to brighten the day up a little.
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on October 31, 2018, 09:31:32 am
Day 2 feeling normal. going to the gym. A Festivus miracle!
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on October 31, 2018, 09:41:15 am
 Hope it keeps going Your way Linda! After all , We are in it for the long haul!

  WHEN NOTHING GOES RIGHT!!!! GO LEFT!!!! :)
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on October 31, 2018, 11:44:55 am
haha ;D Slats ur funny
60 min on treadmill
2.75 miles jog 5.1 mph.
1.30 walk on 5 incline aprrox 3.5 mph

Almost normal!Cannot believe it.
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on November 01, 2018, 08:40:28 am
Still feeling normal. I'm vaklempt.
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on November 01, 2018, 09:27:37 am
If it helps feeling normal is pretty normal
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on November 01, 2018, 09:51:55 am
  That is good to hear Linda! I , Myself am far from normal , therefore that is a foreign feeling that I don't remember experiencing anywhere in the recent passed!!ROTFL! ??? ??? ???  Here is to Your new normal!
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on November 01, 2018, 09:44:32 pm
 Linda ,

    Just checkin' on Ya! Hope all is well with the meds. Everything seems to be great so far with Me! Still early , but no problems to speak of.
   Catch Ya on Your next post!
                                           Tommy (Slats)
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on November 02, 2018, 08:39:33 am
Doing well. Thanks going hiking at Cloudland Canyon state park Ga. With husb daughter son in law. I hope. Weather the way I like it but dont think they will. Also it being 6 miles dont know my kids stamina.    Did  it last year i was youngest (61.)
We shall see.
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on November 02, 2018, 08:43:35 am
 I SEE YOU! LOL! You posted while I was reading . Good to hear all is well. Enjoy Your outing with the family . Just pace your self and take it all in.  Wish I had the time & money to head out to Del Rio this weekend. To broke & not enough time in the day , not to mention all the B.S. going on! Have a good time!
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on November 02, 2018, 09:33:39 am
Arg my son in law is gonna make us late hes a diva.  >:(
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on November 05, 2018, 08:28:50 am
Nothing remarkable to report. Just some dizziness and slight gastro issues, that I have anyway. If this stuff truly works, I will sing its praises.
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on November 07, 2018, 12:46:37 pm
still feeling normal except a bit of the runs. which did not stop me from running  ;D lol 3 miles today!if this medicine cures me of the Hep C and gives me no real terrible problems in the future, it WILL be a miracle. Too good to be true.
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on November 07, 2018, 01:32:41 pm
I felt that way also on my treatment. After enduring 3 interferon treatments I was feeling like either maybe it was a placebo or I felt like I was somehow cheating that I needed to suffer to be cured after all I had been through before.

Glad to hear things are going well best of luck
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on November 07, 2018, 03:36:03 pm
Hey Lynn K

You have given me even more hope.  Good to hear from you and that youre undetected finally!
I have my 1st bloood test Nov 26. Even if its alot less I will be happy. Which shows its working.
Btw there was a good article on  Web MD about the positive effex of 2 cups of coffee per day.
I have been drinking that for years, maybe thats why my liver tests have always been normal, except for haveing a highhhhhh viral load. Bc I also love wine so maybe they cancel each other out  :o wishful thinking!
Thanks 4 responding,
Linder
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on November 07, 2018, 08:39:38 pm
I was infected for 37 years before I was finally cured three years ago. I was diagnosed after being infected for probably 10 years. After I was infected for probably 30 years I was diagnosed with cirrhosis.

I guess that is the reason I stick around. If someone like me being a three time null responder to interferon, a failed DAA treatment with Sovaldi and Olysio who had cirrhosis for about 7 years before my last treatment can still be cured I figure there is hope for everyone to be cured.

Good luck
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on November 14, 2018, 12:27:55 pm
I am such a dope took 2 doses of the Mavyret last night by mistake...forgot I took it and so took another, DUHHHHH
The pharmacist said I will be ok it was just one extra dose....but how stupid am I?
and to take my next dose as normal.
still am feeling normal. no itch no hair fall out, sleep well, not overeating. can exercise as normal, no real fatigue. maybe just a tad forgetful.. ;)
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on November 14, 2018, 02:18:59 pm
I started using a pill counter thing you are not alone lol ;)
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on November 17, 2018, 11:32:53 am
 Hey Linda,
  How are You doing? Hope all is well in Your neck of the woods. Just checking on You. Any problems with Your Tx.? Mine seems to be going O.K. so far, nothing major to report. Take care and be well!

                           Slats
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on November 17, 2018, 05:35:51 pm
Hey Slats

Pretty well thanks. Today it was 60 here and I "urban hiked" 5 miles hills and all.
Had a headache yesterday but Tylenol is a big help. Still feeling mostly normal.
Refilled my meds they make it so easy and only 5BUCKS. copay! Hope the next 9 weeks goes as well as the first 3. and it works....blood test coming up 11/26.

Thanks for askin.

Linda
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on November 21, 2018, 12:05:16 pm
  Hey There Linda B !

   How are things going with Tx. and the family? Hope all is well . Pulling for You. Seems weird that there are so few treatment buddies this time around. Back in 2015 with Harvoni , there were so many of us it seemed like a bunch of class mates! LOL!
Keep it up , see You on the Forums!

                                                     Tommy

 A GOOD FRIEND HELPS YOU WHEN YOU FALL--- A BEST FRIEND LAUGHS IN YOUR FACE AND TRIPS YOU AGAIN!!!!
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on November 25, 2018, 12:03:41 pm
  Hey there Tx. buddy! Hope the first month of Tx. went as well for You as it did for Me.
 Here is to weeks five thru eight being uneventful as well! :). Back to the salt mines tomorrow, then blood work in the afternoon. Hope all is well with You and Your family.

                                          Tommy ( slats )

 
 THE OLDER I GET THE MEANER I GET. I AM PRETTY SURE IT WON'T BE LONG BEFORE I START BITING PEOPLE! ??? :-\
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on November 27, 2018, 08:39:01 am
Got blood work done yesterday, hope it shows progress! Y'all will know! saw a Mavyret commercial on TV finally yesterday. Says 8 weeks, but I'm on for 12 bc of the cihrosis...I read if the Hepc get cured theres a chance that will get better too if you take good care of your liver, which I try (I do like wine~ must be moderate!!)
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on November 27, 2018, 10:17:28 am
  Hey Linda,

     Check out Mugwump & LynnK as well as some others on post treatment Fibroscans on liver condition improvements.

                                            Tommy
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on November 27, 2018, 02:49:07 pm
Hey slats actually mine have not improved. Pre treatment it was 27 one year post it was 33.
But my platelet count did improve it was about 85 before treatment and post it was 110 still low but better. Really hasn’t changed since immediately after treatment though. Last summer at 3.5 years post still about 110 but I’ll take any good news even small slow improvement.

Still here with cirrhosis for 11 years now and not getting any worse :)


Linda sorry to say but you have to stop all alcohol including wine. You and I have ESDL (end stage liver disease) if you want your liver to have a chance of healing you can’t have any alcohol. Even with cure we are still at a higher risk of liver cancer. Less than without being cured but not the same as someone without cirrhosis. Best of luck.
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on November 27, 2018, 03:33:07 pm
Lynn K,

I DO  NOT have end stage liver disease. I have cihrosis 1, end stage is 4. all my liver tests come back well within  normal range. I will keep drinking wine, on occasion. I'm 62 just about and am going to enjoy my life.
I will consult my Dr. on this, anyway. 
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on November 27, 2018, 04:54:28 pm
I apologize I misunderstood you when you said you have cirrhosis. I assumed you have a fibrosis score F4 which is cirrhosis lower scores are not really cirrhosis just steps along the way.

F1 is early liver scarring from everything I have read it is not cirrhosis. A score of F4 is considered cirrhosis which by definition is ESLD as in there is no higher level of damage. ESLD does not mean dying it is just a definition.

Found this
https://www.healthline.com/health/liver-fibrosis#stages

The fibrosis stages range from F0 to F4:

F0: no fibrosis
F1: portal fibrosis without septa
F2: portal fibrosis with few septa
F3: numerous septa without cirrhosis
F4: cirrhosis

Cirrhosis (Fibrosis score 4) is further differentiated by compensated where the damaged liver is still able to function well enough to do its important jobs and decompensated where the liver is so damaged it can no longer keep up with its required functions and symptoms of liver damage begin to appear.

I as you have a fibrosis score of F1 per the AASLD (American Association for the Study of Liver Diseases) recommendations for patients with minimal liver damage (those with fibrosis scores of F1 or F2) after treatment can return to normal health monitoring appropriate to their general health and won’t require additional monitoring post treatment.

But for those with F3 fibrosis of F4 cirrhosis even post cure they should continue to be monitored due to being at risk for HCC.

For myself I see my hepatologist annually and have blood testing and abdominal ultrasound every 6 months. I also have an upper endoscopy every two years to ensure I don’t have a return of esophageal varicies.

If you only have a fibrosis score of F1 you will be fine going forwards and can go on with your life and put hep c in the rear view mirror
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on November 27, 2018, 05:28:40 pm
I’m a little surprised your doctor prescribed 12 weeks of treatment since your are not F4 cirrhosis. Of course having the extra weeks will doubly ensure your cure.

Are you being treated by a liver specialist a general practitioner?
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on November 27, 2018, 07:22:03 pm
Lynn K

Mavyret is used for 12 weeks in GTs1,2,3,4,5,6, with compensated cirrhosis.
I am being treated by a highly competent gastroenterologist, Dr Kim. There are 3 classes of cirrhosis. A B and C. some patients I am informed by someone from another Hep sight on Facebook (shes a moderator too) do have a reversal of cirrhosis in the A stage, but not usually to a perfect liver. I have no signs of late stage at all. my fibro scan looked fine, says the Dr.


Linda
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on November 27, 2018, 08:09:02 pm
Glad to hear you have a good prognosis!

I’ve been followed for Hep c since I was diagnosed in 1990 and cirrhosis since 2008. My current hepatologist is chief of UW Medicine's Northwest Hepatology Clinic and a UW professor of Medicine. I’ve been seeing her since 2013.

But yes I am a lay person I only know what I have learned through my own experience and from reading posts from a brilliant man on another forum who unfortunately passed away a few years ago from liver disease. He worked with his doctors at USFmedical center and even was involved with experimental treatments for his liver cancer. He was also a patient advocate at their liver transplant center. Whatever I know I learned from him.

Yes the Chlid Turcotte Pugh score uses the letter system of A, B, C to describe severity of F4 cirrhosis. Everyone would score as Child A even without any liver disease as that is a level with no damage. The Child score was how patients were previously scored for severity in illness and priority for liver transplant. But the Child score was somewhat subjective so now transplant priority is based on the MELD score (Model for Endstage Liver Disease) the scale is from 6 to 40 with 6 being the lowest possible which again someone with no liver damage would score a 6. Most transplant recipients have a MELD around 30. Most transplant centers require a MELD of 15 to be listed.

While cirrhosis has previously been described as irreversible today cirrhosis especially early cirrhosis like someone newly diagnosed as F4 without any symptoms have about a 50% chance of reversal.

For a patient with only minimal liver damage of F1 fibrosis they can fully anticipate a return to good liver health after removing the cause of their liver damage for example curing hep c

https://www.hepatitisc.uw.edu/page/clinical-calculators/ctp

https://www.webmd.com/hepatitis/meld-score-for-liver-disease

https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on November 27, 2018, 08:20:59 pm
Some information of staging fibrosis and cirrhosis for anyone interested

https://www.hepatitisc.uw.edu/go/evaluation-staging-monitoring/evaluation-staging/core-concept/all
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on November 30, 2018, 03:33:12 pm
HEY ALL

Got my blood test rusults after the month of Mavyret,    UNDETECTED WITH NORMAL LIVER FUNCTION!!!!!!!!!!!

Of course I must finish the  full 12 month treatment, fine wih me!!!!!!

Oh I hope this is the final result at the end!!!!!!

Hey Slats how u doin??? The same I pray!

Linda


Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on November 30, 2018, 04:29:28 pm
Woo whooo congrats!!!!
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on November 30, 2018, 07:45:49 pm
 :) ;) :D ;D
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on November 30, 2018, 08:46:46 pm
Oops meant 12 week lol not month but yall prob know that  ::)
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on December 01, 2018, 06:33:19 pm
 Hey Linda,
   Great news! ;) Glad that was a Typo about the twelve months, LOL. Caught Me off guard I must say! Doing pretty good , so far. I go in Tuesday for results and check up. Got set up Yesterday on the patient portal with the Drs. office. Checked today and there was no Lab info. posted as of yet. Bummer , but no biggie.
  I assume that You are doing O.K. and not having any Sxs. Mine are minimal at best. A few headaches and a little upset stomach at times. I have been noticing a little bit of a rash and some itching on My arms and legs. Nothing of any concern that I can tell. My face and hair seem to be a lot oilier than usual , and arms and legs are real dry. Gonna have to go down to Wallyworld and pick up some more Cornhuskers lotion and shampoo , ROTFL!
 Again , excellent news! 8) ;D

 BEAUTIFUL IRONY IS WHEN THE VERY THING THAT TRIED TO DESTROY YOU , INSTEAD MAKES YOU STRONGER! :)
 
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on December 01, 2018, 08:21:11 pm
Slats

Where you live, have you put on your heat yet? We have and I notice it dries myskin out, its that like every year. Could that be what causing the dry, itchiness? Just a thought.

I was away in NE Ga.  when I got the call from my Drs. Assitant. We celebrated went right to a winery. Couldnt do anything else, our hike was rained out!

Keep in touch with your good news,

Linder
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on December 02, 2018, 10:14:33 am
 Good Morning Linda,

   We have had a couple of cold snaps down to around freezing , so Yea a couple of times. The dry, itchy skin and rashes preceded the heater usage by a couple of weeks. Like I mentioned , I have been using a lot of lotion and some petroleum jelly to combat the problem. Not bad , just annoying at times. I'll get back with details as they become available.  Do You live down by the coast? I live about 50 miles inland , so the humidity stays pretty high most of the time. When I go to My place in west Texas the the the levels drop radically. This seems to be a more of a localized problem ( arms and legs ) rather than a whole body thing like I experience out in west Texas. Hope You had a good holiday and that You and the family are doing well!

                                                            Tommy

 IF SOMEONE THROWS A ROCK AT YOU , THROW A FLOWER BACK AT THEM , BUT MAKE SURE THE FLOWER IS STILL IN THE POT! :)
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on December 02, 2018, 10:29:27 am
Yo Slats

No I live in NW Ga. but it does get very humid bc the Gulf moisture seems to sweep up and give us Fla. like humidity. I get dry skin just bc of the winter and the dryerness of it all.
My biggest SX is feeling like doing nothing, and that is not like me. So I have to force myself. If I don't I will gain weight and so far I have lost a couple I don't want back. oh first world probs.


Bah humbug,  ;D
LB
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on December 05, 2018, 01:00:26 pm
Went to my Gastro guy today. He doesnt hnk I have cihhrosis bc my  ultrscan showed a smooth liver. But he said in afew months when toally finished with tratment he will send me for a fibroscan to make sure. Didnt know those 2 scans were different, duh.
He said I'M probably cured  but of course, finish out the 12 weeks.
Its important to take care of your health all thru your life and I do think  that was a big factor in my treatment. No rec. Drugs, smoking, heavy drinking, keep weight under control, exercise.
If you dont now, start ASAP!!!!

Linda
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on December 05, 2018, 03:26:06 pm
That is great news Linda congrats!

Some web sites incorrectly say stages of cirrhosis being F1, F2 etc

While F2 does indicate increasing fibrosis the only F score that is by definition liver cirrhosis along with nodular appearing liver and all the other potential complications of cirrhosis is F4. All other F scores are just steps along the way.

Per the AASLD guidelines since you don’t have cirrhosis being only F2 you won’t require follow on monitoring after you are cured. You should not be at an increased risk of liver cancer like someone with cirrhosis (F4) and your liver will likely have a good chance of healing essentially completely to a normal liver.

Those of us with cirrhosis have to be followed probably for life with blood testing and abdominal ultrasound every six months to monitor for possible early HCC and an at least an annual visit to our hepatologist as well as at an upper endoscopy every couple of years and possible other monitoring as required. But even for us our risk of further progression of our liver disease is greatly reduced along with our risk of HCC. Some of us may even see some reduction in fibrosis. And of course being diagnosed with cirrhosis means keeping good care of our health and no alcohol.

Congrats again on your fantastic news!
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on December 16, 2018, 10:10:29 am
Feeling tired and lazy!!! is this from Mavyret or just old age??? Hate it. 5 weeks to go...can't wait till its over.
There is a Facebook page called Mavyret 411 if anyone is interested....just a place to vent. Many are feeling joint and muscle pain during and after....I don't know why I have a bit b/c I do exercise and feel achy sometimes after. hmmm

LB
Title: Re: Starting Mavyret Treatment Today
Post by: KimInTheForest on December 16, 2018, 12:06:41 pm
Hang in there Linda! You're more than halfway. That's a good feeling to clear the halfway mark. :)

kim
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on December 16, 2018, 05:56:22 pm
Thanks Kim!!!!!


LB
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on December 16, 2018, 11:31:45 pm
 Hey Linda,

   Keep on keepin' on , looking good. You are almost a short timer now! Being a technologically challenged old fart , I never have experienced social media. Maybe I should get a crash course from the kiddos! LOL!

                                                 Tommy

LORD, GRANT ME THE SERENITY TO ACCEPT STUPID PEOPLE THE WAY THEY ARE , COURAGE TO MAINTAIN MY SELF-CONTROL , AND WISDOM TO KNOW THAT IF I ACT ON IT , ....I WILL GO TO JAIL!
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on January 12, 2019, 11:21:08 pm
 Hey LB,

  Where You at? Hope You are feeling better and doing O.K. Just touching base with You to see how treatment is going. If I am correct , You started the same day as I did. If so , that means You only have a week of Tx. left. How is the old brain doing ? Getting excited ? Anxious ? Nervous ? The countdown starts for You short timer . Hope the last week goes well and You ace Your EOT exams . LOL. Here's looking at You kid!  Your moment is near My friend!

                                                   Slats.

  THINK OF A NUMBER BETWEEN 0 AND 20 . ADD 32 TO IT . MULTIPLE BY 2 . ADD 1 . NOW CLOSE YOUR EYES! IT'S DARK , ISN'T IT ? ROTFL
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on January 13, 2019, 09:11:16 am
I am excited to end this bc I want my energy back. Will I get it? time will. Tell. This flu knocked the wind outta me. Turned into bronchitis! Glad I haven't smoke since 1978. (dang ! old!). I figure that if I was undetected at 4 weeks I will be at 12? Next week 2nd blood test. and no more pills! Cant believe I only had a 5 copay.
I am still on this forum, just mainly lurking. on Facebook there is a Mavyret support group who have been interesting characters. Lotta neurosis. I fit in quite well.  :o ;)
I see you smoke. Please consider stopping. COPD is a horrible thing and I got a taste with this bronchitis.
well tanks for checking up TTYL

Linda
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on January 13, 2019, 09:03:16 pm
Congrats on being not detected on treatment. If not detected at 4 weeks on treatment it is almost guaranteed you will be the same at EOT.

The test that determines if you are cured is the 12 week post treatment to see if your not detected status endures. If you are not detected at 12 weeks post that is considered SVR (a sustained viral response) that test will determine if treatment has worked and you can call yourself cured.

Best of luck your almost there!
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on January 14, 2019, 09:53:01 am
 Hey Linda,

    My Tx. protocol requires Viral load testing at Tx. + 4 weeks , EOT , EOT + 12 weeks , as well as EOT + 24 weeks as per My Gastro and Abbvie.  Back in 2015 when I  did Harvoni Tx. , I was told that SVR12 was the gold standard for cured. Found out last Year that I should have been tested at 24 weeks as well. Be sure to check with Your Dr. about the follow up testing at 24 weeks post Tx. ! Here is to You achieving SVR !

                                                    Tommy
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on January 14, 2019, 11:58:59 am
after monday  my next blood test is 4/15,  too lazy to do math but thst sounds about right.
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on January 14, 2019, 01:46:20 pm
I asked to have the HCV RNA test done at one year post just for my own piece of mind being a 3 time null responder to interferon treatments and having relapsed after treating with Sovaldi Olysio and relapsing. Not to mention having liver cirrhosis for about 7 years before I was finally successfully treated.
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on January 19, 2019, 02:30:20 pm
Tonight last dose! Blood draw Monday! Hope this flu didnt mess things up !
Title: Re: Starting Mavyret Treatment Today
Post by: KimInTheForest on January 19, 2019, 02:38:29 pm
Tonight last dose! Blood draw Monday! Hope this flu didnt mess things up !

Way to go Linda! That's wonderful. Hope you celebrate. You deserve it.

kim
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on January 20, 2019, 01:58:50 pm
  Hey Linda,

    Good on You girl. Best of luck. Here is hoping You pass Your test with flying colors. I am rooting for You.

                                                Tommy

  CUPCAKES ARE MUFFINS THAT BELIEVED IN MIRACLES! ;D
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on January 21, 2019, 08:59:43 am
Thanks same to u! now if I could just get rid of the remnants of this flu!
 :-[

LB
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on January 24, 2019, 08:45:16 am
Turned out I had a secondary infection sinusitis. feels like a cold, low fever...Slats it sounds like what you have.
Having said  that my dr called yester, UNDETECTED and good bloodwork!
so maybe I am cured????

Linda
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on January 24, 2019, 04:42:03 pm
You will be able to say cured 12 weeks after you take your last pill.

Congrats on the good blood tests and especially your undetected!
Title: Re: Starting Mavyret Treatment Today
Post by: slats1056 on January 25, 2019, 12:08:50 pm
 Hey there Linda!

    GREAT NEWS! :D , Onward through the frogs to SVR12  ;) Hope You are getting to feel better. My symptoms have been getting gradually better the last few days. Still coughing a lot. My EOT viral load testing is scheduled for 2-4-19 with follow up with Doc 2-11-19 . Need to check My math and Tx. schedule though , I believe that is actually My last week of Meds. Oh well , either way it is still a waiting game with this stuff.
  Are You scheduled for EOT + 24 as well???? Glad to see Your results My little Tx. buddy. It is Your time to shine! 8) 8) There , I can see past the glare! 8) 8) ;D
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on January 26, 2019, 10:51:21 am
I am finding it very hard to become motivated to start up with exercise etc bc I still have the flu/ sinusitis remnants and don't even feel like getting out bed! that is NOT me.
My antibody count was very high>11 but virus undetected. Ive heard that common. Dr. not concerned.
next blood test in APril.

cant wait to feel human again.

Linda
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on January 26, 2019, 03:03:58 pm
Your antibody count? If you mean your hepatitis C antibody count I don’t think you would be tested for that as every one who had ever been exposed to hep c will test positive for hepatitis c antibodies for the rest of their lives. Antibodies to any virus are made by our bodies when we try to fight off a virus.

Usually you will see a reference to a LLOQ loser limit if qualification on your test results something like <15 or <12 that is the lowest level of virus the test is able to detect so if you had 9 IU/mL of virus circulating in your blood the test would not be able to quantify that amount of hep c virus that result would be detected <15

If I had a hep c viral load test done today it would say “not detected LLOQ <15”

Anyway the important thing is not detected that is great news congrats!
Now onwards to the most important test the 12 week post treatment viral load test when you can call yourself cured

Hope your cold symptoms go away and you are feeling better soon!
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on January 27, 2019, 08:47:13 am
Hey Lynn,

I don't know why but they did a Hepititis panel and one thing was virus anitibodies. I guess all drs. are different? Dunno.  Keep u posted.

Linda
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on January 27, 2019, 02:51:38 pm
That is totally weird we will always test positive for hep c antibodies for life.

Maybe they we’re just curious to see if there was any change in your antibodies levels who knows. Really weird
Title: Re: Starting Mavyret Treatment Today
Post by: KimInTheForest on January 27, 2019, 03:59:32 pm
Hey Lynn,

I don't know why but they did a Hepititis panel and one thing was virus anitibodies. I guess all drs. are different? Dunno.  Keep u posted.

Linda

Maybe they were testing you for other hepatitisis? Hep B and Hep a? Those would involve antibody counts.
Title: Re: Starting Mavyret Treatment Today
Post by: Mugwump on January 28, 2019, 04:09:02 pm
Interesting, qualitative antibody testing has been around for a long time, quantitative not so much and only used a few times on numbers of subjects but not in North America. Only one series of quantitative tests was done on long term SVR subjects to ascertain the levels of antibody reduction over time post HCV infection. The study showed that antibodies do reduce over time in the majority of those who achieve SVR however they only became undetectable in less than 10% of individuals and indeed did seem to increase in a few test subjects. More study is needed now that there are reliable cures for HCV.

The quantitative testing for HCV antibodies is still extremely expensive so I suspect that the tests were only repeated to rule out a new or previously undetected HBV infection.
It would make perfect sense to do the tests for this reason as Kim has stated. With reports of DAA treatments causing HBV infections to suddenly flair up it is a very good idea because HBV antibodies unlike HCV can become undetected over time.
 
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on January 29, 2019, 02:22:43 pm
Maybe they were testing you for other hepatitisis? Hep B and Hep a? Those would involve antibody counts.

you are quite right. All negative( I had the vacs in like 2008), except that antibody count.


Linda
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on January 30, 2019, 12:22:35 am
I’m not an expert by any means on this, but I believe if you were vaccinated against hepatitis A or B you should actually test positive for those antibodies. That’s kind of how antibodies work. Antibodies are made by our bodies to fight off viruses and to prevent future infection. Unfortunately, hep c antibodies are not able to fight the hep c virus otherwise we would have an immunization for hep c.

Just like if either you were ever infected with the measles or were immunized against the measles you have measles antibodies circulating in your blood stream.
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on January 30, 2019, 12:10:09 pm
I was vaccinated so maybe I should relook at those tests it could have been a or b antibodies, bc it was a separate test from the detection of Hep c (NEG TOO!)

LB
Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on January 30, 2019, 11:15:34 pm
Maybe just ask your doctor’s office about the tests you had and their interpretation
Title: Re: Starting Mavyret Treatment Today
Post by: LindaBalz on January 31, 2019, 08:31:23 am
Lynne K

F
Hep A Ab, IgM Negative
F
HBsAg Screen Negative
F
Hep B Core Ab, IgM Negative
F
Hep C Virus Ab >11.0  H
0.0-0.9 (s/co ratio)

The doctor was not concerned whatever this means lol.
I was only wondering about the antibodies

Other test:
F
Hepatitis C Quantitation
HCV Not Detected  (IU/mL)

HCV log10


Linda B


Title: Re: Starting Mavyret Treatment Today
Post by: Lynn K on January 31, 2019, 11:05:20 am
Ok so you are negative for hepatitis A and Hepatitis B antibodies which I’m not sure about how that works since you said you were immunized so if your curious you can ask your doctor about that.

You are positive for hepatitis C antibodies because you were previously infected with hepatitis c virus. You will always test positive for the rest of your life for hepatitis c antibodies.

Your hepatitis C viral load test says not detected which means the amount of the virus is less than the tests ability to detect. This could mean there is no virus present or it could mean only a small small amount of virus below the LLOQ (lower limit of quantification) of the tests ability to detect could be present. That is why the wait for 12 weeks post treatment to make sure all the virus is gone.