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Author Topic: a new concern  (Read 9987 times)

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Offline brie41

  • Member
  • Posts: 191
a new concern
« on: April 29, 2016, 11:14:29 pm »
Hi All,

  Well I did something rather foolish.  I for some strange reason decided to remove the dessicants from my Harvoni bottles.  I just read a post tonight and it said "do not remove".  I am concerned that I compromised the med.  I did call Gilead and they said to call  my Pharmacist.  I then called a Pharmacist and he said as long as it wasn't kept in the bathroom it should be okay.  I have kept it in a relatively cool place and try to keep the it dark in the room.  I know it is working for me, but I have been trying so hard to do everything right and well just wondering what you think.  Brie
Diagnosed  HCV, 1A 2006
Viral load 6 million
Ast/Alt always in the 20's
F0-F1, never changed
Treatment naive, started 8 week Harvoni 3/15/16
4 and 8 week labs undetected
6 week eot labs undetected
13 week eot UNDETECTED!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: a new concern
« Reply #1 on: April 30, 2016, 12:35:39 am »
Also be super careful that your hands are bone dry when you dispense your pills. I kept my Harvoni bottle in a kitchen cupboard beside the sink. Easy for hands or fingers to be a tiny bit moist when I went for my pills. Maybe you can find some dessicant packets in other pill or vitamin bottles. I liked my Harvoni dessicant things so much I hung on to them and use them in my B-complex vitamins, which tend to get wrecked otherwise before I finish the bottle.

kim
« Last Edit: April 30, 2016, 02:05:31 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline brie41

  • Member
  • Posts: 191
Re: a new concern
« Reply #2 on: April 30, 2016, 07:17:56 am »
Hi Kim,

  I actually have 2 from the original bottle and the one I started 2 and half weeks ago.  I took them both our right away.  Think I should put them both in my bottle.  Wasn't sure since they have been exposed to air all this time.  Thanks Brie
Diagnosed  HCV, 1A 2006
Viral load 6 million
Ast/Alt always in the 20's
F0-F1, never changed
Treatment naive, started 8 week Harvoni 3/15/16
4 and 8 week labs undetected
6 week eot labs undetected
13 week eot UNDETECTED!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: a new concern
« Reply #3 on: April 30, 2016, 02:10:53 pm »
I think if the desiccant canisters weren't exposed to moist air, you would be better off putting them back in the Harvoni bottle. I know that mine have kept various bottles of my B-complex vitamins from getting wrecked. And one of my desiccant canisters is about a year old now. Prior to using them, my B-complex powder in gel caps would get clumpy and dark from moisture before I could finish the bottle. I figured any desiccant good enough to protect $30,000 worth of pills must be pretty good desiccant! ;)

kim
« Last Edit: April 30, 2016, 03:10:16 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline brie41

  • Member
  • Posts: 191
Re: a new concern
« Reply #4 on: April 30, 2016, 02:20:47 pm »
Hi Kim,

  I just can't believe I removed them without thinking about it.  I read so much and yet never considered how important is was.  I called another pharmacist and he said to put them in.  Thanks for your replies!!  Brie
Diagnosed  HCV, 1A 2006
Viral load 6 million
Ast/Alt always in the 20's
F0-F1, never changed
Treatment naive, started 8 week Harvoni 3/15/16
4 and 8 week labs undetected
6 week eot labs undetected
13 week eot UNDETECTED!

Offline AndreaM

  • Member
  • Posts: 22
Re: a new concern
« Reply #5 on: April 30, 2016, 04:46:31 pm »
Hi! I haven't removed the desiccant canisters, but do place my Harmoni in a weekly pill organizer. Will that compromise the quality?

Offline Turtle

  • Member
  • Posts: 6
Re: a new concern
« Reply #6 on: April 30, 2016, 06:41:22 pm »
Most medications come from the manufacturer with dessicants and if a pharmacy dispenses them to you in the original sealed bottle of course they remain - but when they are transferred to a regular brown pharmacy bottle they do not usually place dessicant packs in with the meds. The point being that the dessicants are really for longer term storage and/or higher humidity. I personally would not be worried about it in this case (or in the case of putting them in a weekly dispenser) but agree that putting them back in can't hurt.
GT 1b
Likely contracted in 1984
Dx 1990 (declined IF at that time)
Tx naive from 1990-2016
F2-F3 via biopsy in 2009
Fibrocscan 3/7/07 16.6
Sof/Vel/GS-9857 screen visit 3/10/2016 showed VL
of 1,030,000 ALT 74  AST 49
4/6/16 - Randomized to 8 weeks tx Sof/Vel/GS-9857. VL 1,630,000. ALT 63, AST 40.
4/12/16 VL 22. ALT 26, AST 21
4/19/16 VL undetected, ALT 16, ALT 17

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: a new concern
« Reply #7 on: April 30, 2016, 10:43:54 pm »
I put mine in a weekly pill dispenser - pharmacies often make up Webster packs and the like for ease of dispensing. I cleared okay and I'm sure you'll be fine too.
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 brie41

  • Member
  • Posts: 191
Re: a new concern
« Reply #8 on: May 01, 2016, 02:07:17 pm »
Thanks all for your words of wisdom.  I called 3 different pharmacists and felt better after speaking to the third.  I think I will be fine but the post I came across freaked me out.  Then once I googled it, yikes, sounded like it was a huge mistake.  Thought I  I may have compromised the med, but I think it would take some doing or living in the everglades to do that.  I have calmed down and will finish my 9 pills and most importantly keep the faith!!!  Enjoy your day!  Brie

ps I read many posts of people who use a weekly pill box!! 
Diagnosed  HCV, 1A 2006
Viral load 6 million
Ast/Alt always in the 20's
F0-F1, never changed
Treatment naive, started 8 week Harvoni 3/15/16
4 and 8 week labs undetected
6 week eot labs undetected
13 week eot UNDETECTED!

Offline dragonslayerinprogress

  • Member
  • Posts: 62
Re: a new concern
« Reply #9 on: May 02, 2016, 05:20:51 am »
My pill dispenser holder has two weeks with 2 containers per day. I load them all up. It helps when you get brain fog to remember if you took your pills that day. I have been undetected since 4 weeks and almost 16 weeks now. It is more for high humidity and long term. I will probably have to keep the pill dispenser in a plastic bag come summer because we have a swamp cooler. Chips die in an hour :-)
 :)
Geno 2b
dx in 1990, 52 years old
Origin: unsure. Might have been infected at birth
Tx Naive
Pre tx labs 12/7/15
VL 1,315,890 6.119
ALT 188
AST 161
Started tx Solvadi/Ribavirin on 1/19/16
4 weeks undetected
8 weeks undetected
12 weeks undetected
16 weeks undetected
20 weeks undetected
24 weeks...no testing
EOT 4 wks UNDETECTED
ALT 34
AST 42
EOT 8 wks- UNDETECTED
ALT 38
AST 50
Platelets 49

Offline Luna7

  • Member
  • Posts: 179
Re: a new concern
« Reply #10 on: May 02, 2016, 10:18:50 am »
I considered the pill dispenser but went with an alarm kept near me that goes off at noon every day.
Between F2 & F3
Alt & Ast nearly 100
Viral load over 8 million
Gt 3a

Treated 12 weeks with Sovaldi & Daklinza, start date mid-April 2016
Undetected at 4 weeks into treatment
Alt & Ast  normal
Treatment completed July 14
Most likely will be undetected at 12 weeks (mid October 2016) as symptoms are gone

Offline brie41

  • Member
  • Posts: 191
Re: a new concern
« Reply #11 on: May 02, 2016, 12:14:33 pm »
Hi Dragonslayer,

  I set my phone alarm and also chart when I take it everyday.  I have always kept them in the bottle as that is what the directions said to do.  I guess I needed it to be spelled out to keep the desiccant in there too.  It seems like a lot of people keep them in med boxes and glad to know the meds are fine.  When I read a post that said " whatever you do, do not remove the desiccant from the bottle" I kind of freaked out.  I did save them and put one back in.  It was exposed to air for weeks so who know what shape it is in!   I only have 8 days left so just going to not worry about it, I am sure it is all good!!  Brie
Diagnosed  HCV, 1A 2006
Viral load 6 million
Ast/Alt always in the 20's
F0-F1, never changed
Treatment naive, started 8 week Harvoni 3/15/16
4 and 8 week labs undetected
6 week eot labs undetected
13 week eot UNDETECTED!

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: a new concern
« Reply #12 on: May 02, 2016, 01:33:18 pm »
Well, here's yet another idea:  I'm keeping a journal for this "phase" of my life, and I write in it when I take my pill and then put it away until the next day. It is visible in my kitchen, so I see it often during the day.  So far this has worked for me.  FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline brie41

  • Member
  • Posts: 191
Re: a new concern
« Reply #13 on: May 02, 2016, 02:18:30 pm »
Hi FT,

  I love that idea!!  Brie
Diagnosed  HCV, 1A 2006
Viral load 6 million
Ast/Alt always in the 20's
F0-F1, never changed
Treatment naive, started 8 week Harvoni 3/15/16
4 and 8 week labs undetected
6 week eot labs undetected
13 week eot UNDETECTED!

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: a new concern
« Reply #14 on: May 02, 2016, 03:15:19 pm »
Also, since we are the pioneers with these new DAAs, I thought it might be good to keep track of my energy, GI system, moods, etc.  FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline dragonslayerinprogress

  • Member
  • Posts: 62
Re: a new concern
« Reply #15 on: May 03, 2016, 04:19:39 am »
My pill dispenser holder has two weeks with 2 containers per day. I load them all up. It helps when you get brain fog to remember if you took your pills that day. I have been undetected since 4 weeks and almost 16 weeks now. It is more for high humidity and long term. I will probably have to keep the pill dispenser in a plastic bag come summer because we have a swamp cooler. Chips die in an hour :-)
 :)
Geno 2b
dx in 1990, 52 years old
Origin: unsure. Might have been infected at birth
Tx Naive
Pre tx labs 12/7/15
VL 1,315,890 6.119
ALT 188
AST 161
Started tx Solvadi/Ribavirin on 1/19/16
4 weeks undetected
8 weeks undetected
12 weeks undetected
16 weeks undetected
20 weeks undetected
24 weeks...no testing
EOT 4 wks UNDETECTED
ALT 34
AST 42
EOT 8 wks- UNDETECTED
ALT 38
AST 50
Platelets 49

 


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