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Author Topic: Things are moving along.....  (Read 10279 times)

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Offline StillChoppin

  • Member
  • Posts: 43
Things are moving along.....
« on: November 08, 2016, 05:02:18 pm »
Well tomorrow morning will be day 7 of Harvoni.
So far so good, I really dont even know im taking anything. Im sleeping well, although im a bit more restless than usual throughout the night.
Today I had a slight headache but went away after a bottle of aqua. Ive been drinking ALOT of water but today I was busy & didnt hydrate like usual.
Also i guess ive been less flexable than usual Lol, of thst makesany sence? I guess maybe a little joint stiffnessbut it may be from 2 days raking leaves with a 3 & a 7 year old who wanted rides on the leave tarp! Lol..
But overall not bad, so thankful & appreciative to be on the meds & moving toward a cure..
Again i honestly appreciate all the support & help ive gotten so far along my way.
Im less nervous & anxious than i was a week ago..
I'll keep everyone posted on my progress.

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Things are moving along.....
« Reply #1 on: November 09, 2016, 05:49:09 am »
Good to hear things are going well for you. Every day you do treatment is a day closer to living without hcv. :)
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline StillChoppin

  • Member
  • Posts: 43
Re: Things are moving along.....
« Reply #2 on: November 09, 2016, 06:57:08 am »
Thanks Philadelphia!!
Hopefully soon ill be riding in the boat with all you guys living life Hep free!!

Offline Todd1036

  • Member
  • Posts: 5
Re: Things are moving along.....
« Reply #3 on: November 09, 2016, 01:16:22 pm »
Hi, My name is Todd and i'm on day #9 of Harvoni.  I was dx approx 16 yrs ago. I was also told I had had HEP A and B, but i never knew it.
  So far, I have been fortunate.  I haven't had any side effects that have been debilitating in any way.  I take Harvoni at 7:30 every morning.  I am sure to drink water throughout the day. I have had minimal headaches and tend to wake up during the night, eventually falling back to sleep.  Despite waking, i feel refreshed in the morning. 
  I am grateful for this site.  It's good to know other's are going through the same thing as myself.  Thanks for all your posts ! 

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Things are moving along.....
« Reply #4 on: November 09, 2016, 01:33:34 pm »
Welcome, Todd. StillChopping is a great teammate for you to have on your Harvoni journey, and we old-timers are in the stands cheering you both on. -Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline StillChoppin

  • Member
  • Posts: 43
Re: Things are moving along.....
« Reply #5 on: November 09, 2016, 03:25:51 pm »
Hey Todd thanks for responding. It sounds like we're in the same boat only difference being I'm not dealing with a and b. I seem to be waking up several times a night also but I to wake up refreshed. Because while I am asleep I sleep very soundly and it's a little annoying because I've always been a very good sleeper. What is a minor price to pay for the ultimate goal. I've also had a couple minor headaches what goes away within an hour after drinking a couple bottles of water. I'm scheduled for a 12-week cycle I'm not sure of your program time. Please do keep me informed because we are only a couple of days difference with our medication. If I can be of any help feel free to reach out. I'm more than willing to help anyway I can because more than a few people are willing to help me when I first got here and for that I am extremely grateful.

Offline Todd1036

  • Member
  • Posts: 5
Re: Things are moving along.....
« Reply #6 on: November 09, 2016, 03:39:37 pm »
Hi StillChoppin,  yes, it seems we are only a couple days apart !  I am only taking Harvoni and i'm also scheduled for 12 weeks.  I am geno type 1.  all the other abbreviations are still a little confusing, and i dont seem to know as much as others re: status and viral load, etc...  I suppose I will learn more after my first blood test in a couple weeks. I hope all goes well with you and I'm looking forward to staying connected while we take our turns becoming SVR ! (i'm not sure if thats the right text, but you know what i mean)    Take good care !

Offline StillChoppin

  • Member
  • Posts: 43
Re: Things are moving along.....
« Reply #7 on: November 09, 2016, 03:58:59 pm »
That sounds good Todd and I believe you are correct svr is our ultimate final goal. I think? LOL
I'm still trying to learn myself but I have faith we will get there.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Things are moving along.....
« Reply #8 on: November 09, 2016, 04:29:38 pm »
SVR stands for "sustained virological response" and is followed by the number of weeks since the end of treatment. SVR12 means that a viral load test taken 12 weeks after treatment ended gives a result of UNDETECTED. For people on the new drugs such as Harvoni, reaching SVR12 means you are almost certainly cured.

Here's a thread with an old list of acronyms:
https://forums.hepmag.com/index.php?topic=3889.msg43678
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline StillChoppin

  • Member
  • Posts: 43
Re: Things are moving along.....
« Reply #9 on: November 10, 2016, 04:09:38 am »
Thanks gnatty..

Offline Todd1036

  • Member
  • Posts: 5
Re: Things are moving along.....
« Reply #10 on: November 10, 2016, 08:25:56 am »
Thanks !  very helpful !!

Offline Tlk60

  • Member
  • Posts: 37
Re: Things are moving along.....
« Reply #11 on: November 14, 2016, 02:01:27 pm »
It has been a while since I posted...just wanted to put my two cents worth in...I am just finishing up my 4th week of an 8-week treatment with Harvoni.  First two weeks are okay...had some constipation and bloating but with the help of others on this site I was able to change my diet and up the water intake plus drinking prune juice..yuk...

I will start my final bottle of Harvoni on Wednesday and so far so good.  I am functioning well on a small amount of sleep.  I don't get tired even though I wake up at 4:30 a.m.  I usually take a walk or just get up and start my day. I did experience some coldness in my hands for a few weeks about two hours after taking the Harvoni but that has passed as well.

I don't know if it is related to Harvoni but I got a sinus infection that I can't seem to get rid of and the antibiotics given for that has caused some kidney issues that also won't completely clear up but I am almost done so fingers crossed that it will all be good once I am done with treatment.

I feel so blessed and am so thankful for Harvoni!!! 

Offline Tlk60

  • Member
  • Posts: 37
Re: Things are moving along.....
« Reply #12 on: November 15, 2016, 09:41:04 am »
I have a question that I hope one of you will know about.  My doctor told me when I completed my treatment (Dec. 15 is last pill) I needed to get a vaccine for Hep A and Hep B.

Does anyone know how long I should wait after treatment to get that done?

I have met my out-of-pocket with my insurance and was hoping to be able to get the vacccines before the end of the year.

Offline HCVinIL

  • Member
  • Posts: 9
Re: Things are moving along.....
« Reply #13 on: November 15, 2016, 04:10:22 pm »
I'm on day 26 of Harvoni here.  I had some restless leg (arm/leg) type symptoms the first few days and some Melatonin quickly took care of that.  Outside of that I would say that I've probably had some joint issues.  I've been fairly active so it's hard to say how much the joint pain has been related to my activity or the treatment but I'd imagine it's a bit of both.

Tlk: I got my first Hep A/B shot before I started Harvoni and my second, one month shot after so it's probably up to your doctor.
« Last Edit: November 15, 2016, 04:14:03 pm by HCVinIL »

Offline Todd1036

  • Member
  • Posts: 5
Re: Things are moving along.....
« Reply #14 on: November 23, 2016, 02:30:01 pm »
Hi, I am on day 23 of an 8 week program.  i called the Dr. today to ask what i do next. i was advised to finish taking all the meds, wait one month, then call in to schedule a blood test... is this typical ??  I've known a few people to take Harvoni, but they were tested half way through, to see what their viral load was.  i'm afraid if I wait until a month after i finish all the meds, if i need an extra week, it wouldnt be covered by my insurance...Should I be worried ??  Thanks for your imput !

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Things are moving along.....
« Reply #15 on: November 23, 2016, 05:15:54 pm »
Todd, doctors differ greatly in their testing protocols. Is your doctor for the Harvoni a specialist in hepatitis such as a hepatologist, gastroenterologist, or infectious diseases doctor (in other words, someone who treats HCV patients on a regular basis)? Assuming that is the case, then your doctor knows that the only test that is definitive is the one that tests for sustained virological response, typically tested at 12 weeks after the end of treatment. (When Harvoni was still new, most doctors tended to test sooner and more often, mostly because they were used to doing so with the older treatments.)

It's difficult for you the patient to wait without any proof about whether the Harvoni is working. Just remember that it works for nearly everyone. An occasional person (such as dragonslayer, a.k.a. Paul) still has a detectable amount of virus at the end of treatment and for some weeks afterwards but still goes on to reach UNDETECTED on the test 12 weeks after the end of treatment (SVR12). A very small percentage of people never reach UNDETECTED with Harvoni. They then get resistance testing so that their doctor will know which of the two medicines in Harvoni was resisted and which new treatment to prescribe next.

Take a look at the booklet that came with your pills -- it has a chart showing who gets 8 weeks, who gets 12, and who gets 24. Assuming you were correctly put on 8 weeks, even if you were tested during treatment and the test did not come back UNDETECTED, it is extremely unlikely your insurance company would approve more weeks (for the reasons stated in the previous paragraph).

HTH,

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Todd1036

  • Member
  • Posts: 5
Re: Things are moving along.....
« Reply #16 on: November 29, 2016, 01:56:36 pm »
Hey Gnatty, Thanks for your input !!  i feel better about waiting....  what you say makes perfect sense. 

 


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