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Author Topic: Harvoni Side Effect or am I crazy?!?!  (Read 20766 times)

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Offline bsmith9876

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  • Posts: 29
Harvoni Side Effect or am I crazy?!?!
« on: January 27, 2015, 09:58:02 am »
Good Morning...just had to pop in and see if anyone else has been having gum/tooth problems on Harvoni?  I started  1/21 and yesterday the right side of my mouth started aching.  I had to take an aspirin it hurt so bad.

Then this morning the top right portion of my teeth and gums were so tender I couldn't chew.  I'm also experiencing sensitivity from hot and cold.

So before I call the dentist I wanted to check in with you guys to see if it's just a side effect of Harvoni (and hopefully will go away) or I should call the dentist.

Brenda
G 1b

Offline BattleTheBeast

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  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #1 on: January 27, 2015, 10:29:51 am »
HI BSmith,

I can tell you since I have been on treatment my mouth is a little more sensitive but I have seen other posts where people have mentioned this issue. I starting doing oil pulling every day and it seems to have really helped me, mine wasn't severe.

Just get some Organic Food Grade Coconut oil, put a teaspoon or two in your mouth (whatever is comfortable) and let it melt, then swish it around in your mouth for 10-20 minutes. Spit it out in the garbage, it will clog up the sink :). After you are done rinse your mouth with warm salt water and brush lightly.

It's a little weird at first but you get used to it.

Hope that helps!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Amj1951

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  • Posts: 118
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #2 on: January 27, 2015, 10:37:45 am »
I haven't had this issue, but that's a good suggestion to try, but if it doesn't go away, I would consider a trip to the dentist. You don't want to get an infection... just being cautious! : )

Offline bsmith9876

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  • Posts: 29
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #3 on: January 27, 2015, 11:17:39 am »
Thanks guys.  I will try the coconut oil.  I have some at home.
G 1b

Offline BattleTheBeast

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  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #4 on: January 27, 2015, 11:21:05 am »
Amj is right, really think about calling the dentist as well because they may have a special wash or you could need antibiotics.

The coconut oil will get rid of the bacteria but you don't want to let it get too severe and not have it checked.

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline bsmith9876

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  • Posts: 29
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #5 on: January 27, 2015, 11:30:34 am »
Amj gave good advice (TYVM).  I called the dentist and got an appt for tomorrow morning. ;D
G 1b

Offline BattleTheBeast

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  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #6 on: January 27, 2015, 11:40:40 am »
Awesome! Let us know what he/she says please. I am curious.

BTW, I just ate a ton of blueberries and my mouth is irritated, power of suggestion or too much acid!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline bsmith9876

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  • Posts: 29
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #7 on: January 27, 2015, 11:48:16 am »
Ha Mel...go easy! LOL

I sure will let everyone know the outcome.  My appt is @ 8 AM.  I hope it's something they can cure.  The thought of going 7 more weeks with this pain in my mouth is not a happy one!
G 1b

Offline BattleTheBeast

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  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #8 on: January 27, 2015, 12:02:13 pm »
They can help you, there's all kinds of things you can swish with! Seriously though the Coconut Oil will soothe it :)

Year ago, my Mom was on Chemo and had awful mouth sores from it, they gave her this stuff to swish a couple times a day and poof it was way better! I am sure they have even better stuff now, that was over 25 years ago.

No more blueberries for me today! or strawberries or any berries....

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline bsmith9876

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  • Posts: 29
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #9 on: January 28, 2015, 08:58:38 pm »
Hey y'all, Well the verdict is in....I had a crown fail.  So had a root canal today.  Lots of pain meds (vicaprofen of course--no tylenol for me!) and amoxcillin.  Hurts like the dickens.  Endodontist couldnt pin-point the cause but when the dentist did the crown in 2010 he said it may not last too long.  I guess it's just coincidence that it happend during my first week on Harvoni.

Brenda  8)
G 1b

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #10 on: January 29, 2015, 11:04:17 am »
Hi Brenda,

Glad it's all being taken care of :)

Feel better soon!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline bsmith9876

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  • Posts: 29
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #11 on: January 29, 2015, 11:14:02 am »
Thanks, Mel!  :)
G 1b

Offline Amj1951

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  • Posts: 118
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #12 on: February 02, 2015, 09:41:11 am »
Hey y'all, Well the verdict is in....I had a crown fail.  So had a root canal today.  Lots of pain meds (vicaprofen of course--no tylenol for me!) and amoxcillin.  Hurts like the dickens.  Endodontist couldnt pin-point the cause but when the dentist did the crown in 2010 he said it may not last too long.  I guess it's just coincidence that it happend during my first week on Harvoni.

Brenda  8)

Glad to hear the issues is solved and hopefully by now the pain is gone! : )

I had an implant placed not long before starting the Harvoni and I wanted to avoid taking any pills I could so instead of doing an antibiotic my dentist gave me a bottle of Chlorhexidine Gluconate Oral Rinse, USP.

And.. YEP its as nasty in taste as it sounds!! But the area around the implant healed perfectly. (Just thought I'd throw that out there for anyone with a minor issues BUT sometimes an antibiotic is needed so always ask the doctors.)

Meredith

Offline Amj1951

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  • Posts: 118
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #13 on: February 02, 2015, 09:45:06 am »
Glad to hear the issues is solved and hopefully by now the pain is gone! : )

I had an implant placed not long before starting the Harvoni and I wanted to avoid taking any pills I could so instead of doing an antibiotic my dentist gave me a bottle of Chlorhexidine Gluconate Oral Rinse, USP.

And.. YEP its as nasty in taste as it sounds!! But the area around the implant healed perfectly. (Just thought I'd throw that out there for anyone with a minor issues BUT sometimes an antibiotic is needed so always ask the doctors.)

Meredith

FOLLOW UP... it does have alcohol in it.. so if you have cirrhosis, this may not be for you and I was finished with it before starting the Harvoni.  (I would never want to suggest something that would harm someone. Again, always tell all doctors including your dentists what's going on with you and they will know the correct answer or should ..we hope : )
Meredith

Offline sunrise

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Re: Harvoni Side Effect or am I crazy?!?!
« Reply #14 on: February 02, 2015, 11:26:13 am »
Good morning warriors
           Just make sure there are no interactions with those specific antibiotics.  I don't know if S/ O tx. makes a difference, but there is a list of what the ones were, and probably have the new harvoni on the list. Hey Mel you have that list from Lucinda remember? Mel, when is  your vl.lab work getting done? I'm sure you're excited to see improvement!  :). Geez you've been on tx. Since we started with the S/O. It was around the same time. So your getting thru with harvoni alot better. I'm so thankful for that. Blessings Sunrise

Offline sunrise

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  • Posts: 463
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #15 on: February 02, 2015, 11:31:44 am »
Hey bsmith
      Im so happy to hear you resolved the dental issue. It's bad enough we have to deal with the issues of hep c, and tx. Just keeps adding up
 So it great to hear you beat that, and now you're gonna beat this yay! Slay this Dragon!   Blessings Sunrise

Offline bsmith9876

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Re: Harvoni Side Effect or am I crazy?!?!
« Reply #16 on: February 02, 2015, 03:35:01 pm »
Thank's Sunrise!  :)
G 1b

Offline BattleTheBeast

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  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #17 on: February 02, 2015, 05:41:33 pm »
Here's the link for the drug interactions Lucinda shared with us

http://www.hep-druginteractions.org/Interactions.aspx

Question, we can't gargle with regular listerine or scope anymore if we have cirrhosis? I am not swallowing it!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline sunrise

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  • Posts: 463
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #18 on: February 02, 2015, 06:13:16 pm »
I think he was just talking about reinfection. Just don't swallow lol.joke

Offline BattleTheBeast

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  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #19 on: February 02, 2015, 06:15:21 pm »
LOL Sunrise ;D

Made me giggle, thanks I needed that! Hope all is well,

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline emmett

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  • Posts: 31
harvoni and depressed
« Reply #20 on: February 03, 2015, 12:45:30 am »
I have 17 more days on a 12 week course of Harvoni and while the side effects have been manageable to weird I was happy to think it was almost over. It's the anxiety at night that has been the worse thing and the funny hearing problem. Anyhow I was at the pharmacy today and the head pharmacist whom has doctorate tells me I have cirrhosis and need to be on a 24 week course of the drugs. I tell her I am F3 and that is not cirrhosis but she tells me it is a very damaged liver and that is cirrhosis. I'm totally bummed out but I was way the hell bummed out to find I had f3, that came not too long ago by the way. I have 1A and F3, I don't know how long I've had HepC but I found out about 7 years ago and have HIV as well. I stopped drinking more than 7 years ago because I never felt good when I did drink so it wasn't worth it but I would have enjoyed sharing that good wine or champagne on the very very rare occasion it was put before me and I'm talking about less than 1/3 glass. To make my point I've lived a fairly drug free and sober life, quit smoking 30 years ago and try always to eat right, I do partake in the cake now and then and that is my only addiction. So I"m really bummed out that my liver still went south regardlesss.

I'm reading all of this stuff that tells me I may get rid of the virus but my liver may still fail or not improve if it is this bad, should I just go and jump off a bridge now or is there any hope. I have been dealing with HIV from the beginning and I am the come back kid regarding that. I have lung disease as well and problems with my bones due to the prednisone I've had to take from the lungs and then the HEPC, is there no rest for the now wicked?

Offline BattleTheBeast

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  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #21 on: February 03, 2015, 01:04:49 am »
Emmett

Please take whatever this Pharmacist told you with a grain of salt. She was way  out of line in my opinion and she is a pharmacist NOT a liver specialist. Honestly I'd file a complaint regarding her behavior. Livers can regenerate its documented . F3 is not F4!!!

Hang in there and talk to your specialist!!! I'll write more to u tomorrow. It's late here and I'm on my cell but i had to respond when I saw your post. I'm so sorry this person was so ignorant!!

Sending you a big hug! It's gonna be ok!

Mel
« Last Edit: February 03, 2015, 08:06:30 am by BattleTheBeast »
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Lynn K

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  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #22 on: February 03, 2015, 01:33:41 am »
Yes Talk to your specialist!!!!! And stay away from the Pharmacist

I have F4 cirrhosis was diagnosed in Jan 2008

I AM STILL HERE! I even work full time. Cirrhosis even if you have it, which you do NOT, is not a death sentence it just means you have to be careful.

There have been some studies that indicate if hep c is cleared your liver may improve especially for patients like you who do not have cirrhosis.

http://hepatitis.about.com/od/diagnosis/a/Metavir.htm

What Does My METAVIR Score Mean?
The fibrosis is graded on a 5-point scale from 0 to 4. The activity, which is the amount of inflammation (specifically, the intensity of necro-inflammatory lesions), is graded on a 4-point scale from A0 to A3.

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

Good luck
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline SickTired1

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Re: Harvoni Side Effect or am I crazy?!?!
« Reply #23 on: February 03, 2015, 01:41:32 am »
Emmett, that pharmacist is just plain wrong. As Mel says, F3 is not F4. You may have Hep C and HIV but you don't have cirrohsis. Small blessing, but a true one. Don't give up! I am F4 and though I'm tired a lot these days, I still work, do music gigs, and generally function pretty well.  It is hard not to let fear guide us especially when goaded by someone like this pharmacist, but try not to let anyone else have that power over you.  They have no right to do that to you. DO listen to Lynn.  She is smart!
Geno 1A, Il28bTT
Female, age 64
Inf late 60's/early 70's
Dx October 2012
F4, Childs Pugh A
Triple therapy June 2013-May2014 (pegint/riba/telaprevir) Relapsed June 2014
Harvoni/Riba 1200 mg day started Jan 2015

Offline emmett

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  • Posts: 31
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #24 on: February 04, 2015, 03:19:35 am »
Thanks guys, I'm feeling better today and not letting what the pharmacist said bum me out like it did when I heard it. I called my doctor and he is checking with the best he can find to see if I actually do need to extend my treatment and until I hear from him which he said would be soon I'm going to just let it go out of my mind. I'm sure you all understand what a hellish beast this has been, the fog, the swollen belly, the aches and on and on. I just have to be grateful that these medications are giving us all another chance, I remember a few good people that did not make it and they were way too young.

Offline sunrise

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Re: Harvoni Side Effect or am I crazy?!?!
« Reply #25 on: February 04, 2015, 06:45:29 am »
Good day Emmett
        I hope this note finds you feeling a bit calmer. I understand your concern for sure, but it will work out, you'll see :-).
        It's good to focus on the positive,  and not let the dark side take over. There are many good people with so much knowledge here on this site.  Found the way through some pretty intense times, and believe me they weren't pretty. Best wishes on tx. Sunrise
 

Offline emmett

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  • Posts: 31
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #26 on: February 06, 2015, 02:33:36 am »
My doctor checked with the makers of Harvoni and they said I'm not considered cirrohitc as far as their studies go. I'm to stay with the 12 week course of Harvoni, hopefully my liver will regenerate a whole ton and I'll start to feel better soon. Thanks all.

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side Effect or am I crazy?!?!
« Reply #27 on: February 06, 2015, 03:50:55 am »
Yes you said you are F3 which is not cirrhosis F4 is cirrhosis which is a good thing less damage to with luck repair and a better chance of a cure!

Good luck
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

 


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