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Author Topic: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)  (Read 15860 times)

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Offline Dayna

  • Member
  • Posts: 14
3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« on: February 22, 2015, 03:20:54 pm »
Hi! I'm Dayna.  New to this forum today, but read many posts since yesterday.  Thank you for all your encouragement!

A brief history about myself... After a blood donation in 1994, I received a notice and rejection letter stating I had hep C.  Since I seemingly had no symptoms of the disease, I waited till 2004 to try to do something about it.  I Tested as genotype 1a &/or 1b. After an unusually painful liver biopsy with findings of mild fibrosis, & viral load under 1 million.  My Doc suggested cure percentage of @ 70%, so I did the 11 month HORRIFIC interferon - ribavirin treatment, only to find I wasted time, energy and money as I was a non-responder.  I had a full page of noted side effects from that treatment.  A difficult journey it was!

Now at age 53, I just started Harvoni treatment 3 weeks ago.  1st & 2nd week side effects felt like mild hangover, with mild head ache, fatigue and some anxiety.  Though the listing of side effects state insomnia, which I'm so use to having; I've slept better these last few weeks than I have in years!  Now I seem to be less groggy now upon awaking and I think I'm starting to feel a little less joint pain, and fatigue throughout the day.  Being cautious on that statement because I so want my energy level to upgrade after my 12 week treatment is complete. 
*One side effect (?) that I'm curious if anyone else has experienced is an undying feeling of either like post nasal drip or a lump in the back of the throat.  It's especially prominent about 20 - 30 min. after I take the pill (9:00 pm), driving me crazy till I fall asleep.  It subsides somewhat throughout the day, but is still moderately nagging 95% of the day.

If this is the worst, I'm feeling very blessed.  My copay is extremely low and the side effects are quite tolerable.  I just pray all are able to conquer this awful disease.  Thanks for tuning in to my ramble and God speed in your recovery! 
Dayna     
:)

Offline Sweetie1

  • Member
  • Posts: 28
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #1 on: February 22, 2015, 05:42:02 pm »
Hi Dayna,

   I had alot of problems with my nose during treatment, so stuffy with blood. I have finished my treatment, tested negative now. My nose is so clear now and my energy level is amazing! Hang in there, Harvoni is indeed a miracle drug!

Offline 575to505

  • Member
  • Posts: 19
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #2 on: February 22, 2015, 05:57:24 pm »
Hi Dayna and Sweetie1,
I'm 10 days in and I've experienced a few nose bleeds. Good thing they stop quickly.

Offline Dayna

  • Member
  • Posts: 14
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #3 on: February 22, 2015, 07:56:39 pm »
Hi Sweetie1 & 575to505, Thanks for responding. I have had a bit of dried blood in my nose but have chalked that up to extreme cold this winter and how dry the house gets with the heat on...  Some things we may never know.  But I'm so glad to hear your energy level is up Sweetie1!  I'm pretty physical between my job and yard work, so I'm hoping for the "wonder woman" experience when I'm done! :)  I've probably had this since 18 years old, so whether it's aging or the hep C.  I'm hoping the latter!  :)
   
:)

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #4 on: February 22, 2015, 09:01:10 pm »

Hi Dayna,
Not quite sure how to use this "quoting in"  the right way but I wanted to reply directly to your lump in the throat id. Today was day 3 for me and I feel like something is irritating my lungs and throat. Not awful but makes me feel like I'm about to catch a cold or bronchitis or something. I felt that since I started. Sometimes it's not noticeable and then I have to cough again. Outside of that a bit of dizziness and slightly blurry vision. A slightly foggy feeling. Nothing really debilitating to where I feel I am stopped in my tracks yet. I have felt less discomfort in my liver since I started and I slept pretty well last night too. Hope I was some help. Good to see you made it to therapy!

Hi! I'm Dayna.  New to this forum today, but read many posts since yesterday.  Thank you for all your encouragement!

A brief history about myself... After a blood donation in 1994, I received a notice and rejection letter stating I had hep C.  Since I seemingly had no symptoms of the disease, I waited till 2004 to try to do something about it.  I Tested as genotype 1a &/or 1b. After an unusually painful liver biopsy with findings of mild fibrosis, & viral load under 1 million.  My Doc suggested cure percentage of @ 70%, so I did the 11 month HORRIFIC interferon - ribavirin treatment, only to find I wasted time, energy and money as I was a non-responder.  I had a full page of noted side effects from that treatment.  A difficult journey it was!

Now at age 53, I just started Harvoni treatment 3 weeks ago.  1st & 2nd week side effects felt like mild hangover, with mild head ache, fatigue and some anxiety.  Though the listing of side effects state insomnia, which I'm so use to having; I've slept better these last few weeks than I have in years!  Now I seem to be less groggy now upon awaking and I think I'm starting to feel a little less joint pain, and fatigue throughout the day.  Being cautious on that statement because I so want my energy level to upgrade after my 12 week treatment is complete. 
*One side effect (?) that I'm curious if anyone else has experienced is an undying feeling of either like post nasal drip or a lump in the back of the throat.  It's especially prominent about 20 - 30 min. after I take the pill (9:00 pm), driving me crazy till I fall asleep.  It subsides somewhat throughout the day, but is still moderately nagging 95% of the day.

If this is the worst, I'm feeling very blessed.  My copay is extremely low and the side effects are quite tolerable.  I just pray all are able to conquer this awful disease.  Thanks for tuning in to my ramble and God speed in your recovery! 
Dayna   
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Dayna

  • Member
  • Posts: 14
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #5 on: February 22, 2015, 10:56:37 pm »
Hi Keanu,
I think I know what you are talking about with the lung irritation too.  I'm a bit more breathless, more easily during slight exertions.  I just took my pill and lucky me... the "lump" in my throat reappears about 20 mins after.  Almost feels like the pill is stuck there, but I know it isn't.  I drink plenty of water to get it down and have eaten bread or what ever I can think of to rid the feeling to no avail. 

I am glad your discomfort has subsided and you slept well.  I hope it continues.  Thank you for responding ~ this forum has helped me tremendously! I hope all goes smoothly for you and we can rid this albatross once and for all!
Dayna       
:)

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #6 on: February 23, 2015, 12:08:10 am »
Hi Dayna and welcome

You said you have a low copay have you checked with Gilead support path they have a coupon so your copay  be only 5 dollars my normal copay would be $20 but with the coupon is is just $5

http://www.mysupportpath.com

The HARVONI and SOVALDI co-pay coupons may help eligible patients lower their out-of-pocket cost.

With a co-pay coupon, most eligible patients may pay no more than $5 per co-pay (restrictions apply)
Not valid for patients enrolled in government healthcare prescription drug programs, such as Medicare Part D and Medicaid. Patients in the coverage gap known as the "donut hole" also are not eligible
The HARVONI and SOVALDI co-pay coupon programs will cover the out-of-pocket costs for HARVONI or SOVALDI prescriptions up to a maximum of 25% of the catalog price of a 12-week regimen of HARVONI or SOVALDI
PATIENTS CAN CALL 1-855-7-MYPATH (1-855-769-7284) TO REGISTER OVER THE PHONE
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 Dayna

  • Member
  • Posts: 14
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #7 on: February 23, 2015, 12:34:04 am »
Hi Lynn, Yes. My copay is only $5.00.  I just received my EOB from BCBC ins. stating the usual copay is $100.00 but Gilead is helping with the coupon. I find this wonderful considering other insurance coverage being denied so frequently. Thanks for your input!
:)

Offline Dayna

  • Member
  • Posts: 14
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #8 on: February 23, 2015, 09:19:55 am »
Hi Keanu, I was just curious if you are a smoker? I am a light smoker at @ 2 - 3 cigarettes. I quit completely during the interferon treatments because it was very severe.  This seems reminiscent of that.

:)

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #9 on: February 23, 2015, 09:40:38 am »
Hi Dayna,

      No I don't smoke. I did once...quit 16 years ago. I was an occasional drinker- like less than a handful of times per year until a few months ago. I'm going into my therapy clean as a whistle. I'm aiming for abundant health from here on out. My stats in January before starting were Hep C A1 --F-4 .90 cirrhosis --A3 severe activity-- just under 4 million VL. Shocked me straight. My boys are 10 and 8.
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Dayna

  • Member
  • Posts: 14
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #10 on: February 23, 2015, 06:08:00 pm »
Keana,  Well, you will soon have abundant energy for your boys!  I know your shock level too.  It certainly makes you do some serious self evaluation!  A new energy is what I'm anxiously awaiting.  I have trouble imagining what the normal energy level is supposed to be, not to mention aches and pains...  I hope I'm not disappointed the end of this! I don't know what my numbers were prior to starting this treatment but fortunate to know I don't have cirrhosis. I see him at 8 weeks and have many questions.

I was curious if you are a smoker since you described similar feelings in your lungs/throat that I feel.  Never been a heavy smoker but I do know none are good for me...
:)

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #11 on: February 23, 2015, 06:48:12 pm »
Hi Dayna and Sweetie1,

        I hope so Dayna! like you I am sooooo hoping for that kind of energy again. In my mind I think I was 22 last time I felt that good. My guess is this happened to me in 85/86. Was young and partying a lot then after the Marines. Had a couple of bad car accidents around that same time. Tried to give blood in the summer of 86. The girl said the quick screening came back with a denial. I never followed up on that. Just assumed I had too much alcohol in my system or something (which was true that summer). No one caught high liver levels in my blood until a physical in 2000. Anyway, today was not a great day... Day 4. The headache was stronger. I did exercise but it took everything I had to stay on task with my goals.

For Sweetie1..
I just wanted to say CONGRATS!! and thank you so much for the inspiration :)
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Dayna

  • Member
  • Posts: 14
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #12 on: February 23, 2015, 08:43:41 pm »
Keanu,  I hope tomorrow is a better day for you. I'm wondering if you slept well again. I've been listening to everyone here to keep hydrated and eat well... has made a difference with me!  Feel better soon and hang in there!
:)

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #13 on: February 24, 2015, 09:26:37 pm »
Hi Dayna,

       Thanks, I had a few queezy moments and have new questions I need to take to a doctor but day 5 was a good day over all. I've been sleeping fairly well but woke up way too early a couple of these treatment days and then trying to recoup what's left which seldom works. Hope you had a good one. Hope everyone here is doing well today!
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline kate0b1

  • Member
  • Posts: 293
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #14 on: February 25, 2015, 06:50:21 am »
@dayna, i have had a stuffy nose since forever it seems, i had just chalked it up to the house being to warm and dry (crazy cold winter), we have a whole house humidifier that doesn't seem to help. I have been sleeping well although my husband tells me i have been talking in my sleep like mad lol.

kate

Offline Dayna

  • Member
  • Posts: 14
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #15 on: February 25, 2015, 03:54:54 pm »
Hi! Interestingly enough the past couple of days I haven't felt the lump in my throat nearly as much, but now I have to keep clearing my throat. Some nasal drainage. .. My sleep has been soooo good since I began this, I can't believe it. No sleep talking according to the hubby but sure realizing my dream state is in tact. Been years since I've slept like this. Go figure, so many having insomnia with this. I feel guilty!  I hope soon all of you will get this wonderful thing we all use to recognize as real sleeping! 
:)

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: 3 weeks on Harvoni ~ *unusual post nasal side effect (?)
« Reply #16 on: February 25, 2015, 04:13:58 pm »
Hi Dayna and Kate,

           I have to cough at times which is sometimes just slightly productive- not a lot. I have determined that because I am not actually sick and am very healthy outside of this disease, and also because it is so intermittent, that this is one of the avenues my body is trying to use to get rid of the dead virus! I didn't have anything like this the day before I started taking this medicine. I haven't had a respiratory illness in years and my boys are healthy. Glad you're getting sleep Dayna! that's great! Hope everyone is doing well today!
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

 


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