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Author Topic: Don't worry about treatment side effects :)  (Read 6173 times)

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Offline outfitter01

  • Member
  • Posts: 9
Don't worry about treatment side effects :)
« on: July 06, 2015, 09:31:19 am »
Hi everyone!

I decided to post my experience, just in case, there was anyone out there that was worried about side effects and starting on Harvoni treatment, I know I was!  I read everything I could on possible side effects.  Unfortunately, I had such brain fog that I found the studies impossible to understand. So I had to read personal experiences, as many as I could find! I am going to pay it forward and post my experience, in case it is helpful.  Thanks to everyone who posted as it was a great help to me! Needless to say I was terrified that this medicine would exacerbate my already unmanageable symptoms.  What I learned on this forum was that not treating was more harmful in the long run. So I took my first pill Jun 26 2015 at 930 pm.

Now let me give you a little background, I am genotype 1A, infected 10 years ago, F2, fatty liver, cryoglobunemia, debilitating joint pain, insommnia, abnormal thyroid, severe brain fog, lack of appetite. I rarely feel hungry.  I forget to eat as a norm, which probably contributes to my general fatigue and weakness.  My extra hepatic issues were such that I went to the ER multiple times and I was initially mis-diagnosed with Lyme disease last year.

Day 1 930 PM: insommnia, stiff joints that would crack and release (weird), HUNGRY (weird.) I ate twice during the night. In the morning, my knee was less stiff than usual, and slightly less brain fog than usual.  Energy also was a bit better, despite getting very little sleep the night before.
Day 2: More energy than yesterday, even took the kids to church, slight backache that went away after a glass of water, wow! Did not notice until the end of the day that I was not exhausted once! Insommnia.

Day 3: Even better today than yesterday,did physical therapy through out the day (moving felt good), the energy seems to keep increasing.  Also getting some oily skin like I used to. No headache today, no joint pain?!?!!! I cant believe it.

Day 4: I worked out and it felt invigorating.  I felt like my old self for the first time in 2 years. I was patient with the kids, I think since I am not so tired all the time.  I did not notice the day go by. I took the kids to the park, ice cream, pool, shopping, cooked dinner, finally got tired at 830 PM. Wow!  No Insommnia, slept like a baby.

I am sorry if I gave too many details, but I wanted anyone who was worried to get an idea of what this medicine is doing for me.  Everyday I recapture a part of myself that was taken from me by hep c.

I improve a little more everyday, for example last night I was able to read and understand the Harvoni PI.  This is  something I was unable to do less than 9 days ago when I was researching Harvoni.   I am  recouping my mental faculties.  Is the brain fog gone? Not completely and I know I still have a long road to health.  I do get a little better everyday. A positive attitude is important, water is important, physical activity is important, sleep and diet  are important too. We all know this. 

I have taken this medicine for a week now, and I have only experienced a relief of the extra hepatic manifestations that neither anti deppresants, nsaids, ritalin, lunesta, maelatonin, lactulose, milk thistle, schizandra, steroid injections, and antihistamines, were all UNABLE to achieve. 

I have not lost my keys or cell phone once since on Harvoni, I have not lost my train of thought once, I sleep well and wake up refreshed. 

I will update as I experience anything notable positve or negative but so far so good!  Good luck everyone! 

I just want to pass this experience along for those of you who are worried about starting treatment, DON'T WORRY.  The damage brought on by Hep C is far, far worse.  I do not like to use the word side effects to describe how harvoni has made me feel.  The way I look at it if you can handle hepatitis c symptoms, then you can handle this. 










genotype 1A diagnosed in 2004
viral count over 6 mil
positive for cryoglobulins
F2 on fibroscan
AST and ALT vary from 300 plus to norm

Offline Redbird29

  • Member
  • Posts: 73
  • I've seen the needle and the damage done.....
Re: Don't worry about treatment side effects :)
« Reply #1 on: July 06, 2015, 11:59:24 am »
Hi Outfitter01 !!
  So glad to hear that you are having a positive experience during your treatment!! I took my first pill on June 25, 2015 at 7 am and I also am feeling better than I have in years.
  First day slight headache, slight brain fog, and a little nausea. Snapped at the kids once. Food and water took care of that!
  Since then nothing! I am working, handling the heat well (I live in the Mojave Desert and it is between 110-115 degrees right now), sleeping like a rock and eating well. I too have noticed my skin is a lot better, I no longer have the debilitating pain in my legs and feet which would have crippled me after long weekends like we just had and my acid reflux has not acted up since I started treatment.
   I totally agree with you that for some of us the sides are not unbearable though I have heard others are having trouble. But weighing treatment vs not treating - no contest. Harvoni every time!
Infected - late 70's /early 80's
GT - 1a

Fibrosure 1/2015 - F1-2
TX Naive - Harvoni 8 wks

SOT 6/25/15  VL - 468,000        AST-44  ALT-56       
EOT  8/19/15  VL-  Not Detected AST-21  ALT-30
1 YEAR POST TX - UNDETECTED AST 20 ALT 22
2 YEAR POST TX - UNDETECTED AST 15 ALT 18

Offline Mr. Bob

  • Member
  • Posts: 37
Re: Don't worry about treatment side effects :)
« Reply #2 on: July 07, 2015, 02:56:47 am »
That's how I  felt the first 2 to 4 weeks then the typical symptoms appeared...... It is better than Interferon...just some fatigue- brain fog- vision blurriness ...... the medicine has not built up in you just yet.......   .........when I was on a 3 mile race   the first 1/2 mile I said.........shucks this is a piece of  cake........ yeah right   he he
I am amazed how there are a few who seem to have very minor side effects  but this is strong medicine.........so it is not a sign of weakness or thinking when they appear ,,, just know  as my Doctor says there is a down side and an upside to drugs...
« Last Edit: July 07, 2015, 10:11:01 am by Mr. Bob »

Offline Bituman

  • Member
  • Posts: 157
Re: Don't worry about treatment side effects :)
« Reply #3 on: July 07, 2015, 08:41:17 am »
Congrats Outfitter, so glad for your positive results.  I hope your experience inspires others.  I had zero side effects during treatment.  I even trained for and raced a couple of bike races here in AZ while on treatment.  I wish I could say the Harvoni made me faster, but of course, it didn't.  Mid-pack finisher as usual. 

There is a thread on this board with many hundreds of posts regarding side effects. While I remain hopeful for those having difficulties on treatment, I always thought there should be a thread to cite positive treatment experience to add some balance.  Perhaps you just got it started Outfitter. 

Hope your improvement continues! 

Bob

Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

 


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