My battle begins!

[darlynn]

H i everyone.  I have been stalking you and soaking up as much info as possible about Harvoni and the side effects.  Great information, as no one else hardly knows what it is yet!

I took my first pill Thursday night and woke up with my usual aches and pains.  I had a horrible metallic taste in my mouth and experienced "body rushes" like cold chills, but hard to explain.  My imagination    told me that I could feel electrical impulses racing through my body.  I felt sick at my stomach and fatigued.  Luckily, I am not working so I could kick back and drink my water.  I have a goal of 96 oz per day.

Day 2 was pretty yucky.  I started to get a little depressed about not feeling like doing anything, but my dear Husband came to the rescue.   My best friend made dinner for us and I fell asleep while everyone cleaned up.  I am blessed in that way.

Oh, Day 3?  Pretty much slept through it.  I tried to eat, but couldn't hold it down.  Finally, a little plain rice did the trick.  I do not have much of an appetite and the heartburn is horrible!  Quit the Omeprazole and nothing else seems to help.  Going to try vinegar tabs if Doc says OK.

Day four, achy, icky. Muscle spasms and body rushes. No appetite, threw up morning coffee, so I may have to give it up to prevent heartburn.  I have been drinking my water, but last night, I even threw that up.

So, here I am on day 5.  My 57 year old body is fighting those little bugs with all we've got.  I am super tired but I think I will settle in for some marathon TV, as some of you suggested.  I was told I had the highest viral load my Doc had ever seen:

  Tests: (1) HCV RNA Qntwref (CD:394252627)
! HCV RNA (IU/mL) [H] 23984043 unit/mL (R) < 15 < 15
! HCV RNA (LOG IU/mL) [H] 7.38 LogIU/mL (R) < 1.18 < 1

Is that the VL?  23,984,043 ?

Tests: (1) CMP (62425504)
 Sodium 140 mEq/L (R) 136-145 13
 Potassium 4.2 mEq/L (R) 3.6-5.1 3.
 Chloride 104 mEq/L (R) 101-111 10
 CO2 30 mEq/L (R) 22-32 22 3
 Glucose, Serum/Plasma
 101 mg/dL (R) 74-106 74
 BUN 15 mg/dL (R) 8-26 8 26
 Creatinine 0.77 mg/dL (R) 0.44-1.00
! Anion Gap 6 mEq/L (R) 5-15 5 15
 Calcium 9.2 mg/dL (R) 8.9-10.3 8
 Protein Total 7.4 g/dL (R) 6.5-8.1 6.
 Albumin 3.8 g/dL (R) 3.5-5.0 3.
 Bilirubin, Total 0.7 mg/dL (R) 0.3-1.2 0.
 Alk Phos 46 U/L (R) 38-126 38
 AST [H] 45 U/L (R) 15-41 15 4
 ALT 40 U/L (R) 14-54 14 5

Maybe ya'll can help me decipher what all this means. 

And what do you do for pain? I had a bottle of Hydrocodone 5mg and took one today.  Seems to be helping but it makes me sick at my stomach, too!

I have been a mess...rollercoaster mood swings and crying spells.  I am putting it all out here with the hope that this will help someone, as it helps me to cope.

So glad I found this forum!  I look forward to "meeting" you and sharing.  Hopefully, whining is allowed, as well.  ~darlynn
 

[Lukey]

Hi and welcome. Yes, that 23k number is probably your VL.
My nurse said she's seen it in the billions in some people.
The most I've ever known mine to be is 5.4 million, which was last October.

My SFX of headache, flu like symptoms, and GI issues only lasted 3 or 4 days and then they pretty much went away.

I'd ask your MD about what to take. I took small amounts of tylenol for a few days which helped a lot.

Joe

[Long_Haul]

Welcome Darlynn, Sorry to hear you are having a tough start. You should write down anything you are taking either prescription or over the counter, including supplements and review them with your doctors office.(There is a list of meds you should not take on the big sheet of paper that came attached to bottle of pills you received) There are a few things that can mess with your treatment such as antacids as they absorb your Anti Viral medicine.  Can you share with us what treatment plan are you on?

Some of the symptoms you describe sound like what you get from a drug named Ribavirin, are you taking that along with your antiviral.

Hang in there and talk to you doctor about what's going on with you. The side effects should reduce in the coming weeks. Good luck,

AL

[amy1662]

Hi Darlynn, Sorry you are not feeling well. The side affects I had was feeling tired off and on. I had some body aches but not sure if that was Harvoni related. I only had that for a few days. Everything I felt was very mild. I really don't have much in the way of side affects anymore. I am on my last four weeks of treatment. Hang in there it will get better we are here for you, Amy

[kate0b1]

welcome darlynn, sorry you are haveing a tough time starting, the sides usually come and go but seem to get easier (at least in my experience). Are you drinking enough water (jezz it feels like that is all we ever ask anyone), I found very early if i wasn't drinking enough i felt crappy for the day.

I think the mantra goes breath, breath, water, water repeat 

kate

[Lynn K]

Is that the VL?  23,984,043 ?

Yes it is your viral load 23 million
this is also your viral load express on the logarithmic scale
HCV RNA (LOG IU/mL) [H] 7.38 LogIU/mL

[dragonslayer]

Hi and welcome. Yes, that 23k number is probably your VL.
My nurse said she's seen it in the billions in some people.
The most I've ever known mine to be is 5.4 million, which was last October.
My SFX of headache, flu like symptoms, and GI issues only lasted 3 or 4 days and then they pretty much went away.

I'd ask your MD about what to take. I took small amounts of tylenol for a few days which helped a lot.

Joe

Look again; its not 23k, its 23mil!

[darlynn]

Thanks everyone for the warm welcome!  I do feel better today, except for the heartburn.  I so miss my Omeprazole.  Hubby got something natural from the health food store and it doesn't quite do the trick.  I went to my chiropractor and he always makes my day.  Then, went out and got some real vitamin D out on the lake.  A little cool but sunny and mid 60's "forced" us to take the boat out.  Now I am just my regular achy self and a bit tired.  I will keep you "posted"!  ~darlynn  :-)

 

[Lukey]

Look again; its not 23k, its 23mil!

I don't need to look again!!
I meant to say 23 million, and I'm sure we all realize her VL # is in the 20 Millions!!

[Lynn K]

Hi Darlynn

I am right there with you missing my Prilosec it is going to be a long 24 weeks without it.

Eye on the prize

[Kwick]

Hi,

I started Harvoni on January 20th and had symptoms including nausea, no appetite, diarrhea, headache, muscle aches and tiredness. However, by day 5, I only had a mild headache and diarrhea.  Today, day 11, I only have diarrhea which I'm kind of prone to in any case.  People wrote to me to tell me that their symptoms abated so hopefully yours will too.  I stopped taking my protonix and haven't really had much in the way of issues not taking it but I don't eat 2 to 3 hours before bedtime.  Katherine

[darlynn]

Virus free at 4 weeks!  Energy seems to be returning and only occasional stomach upset.  Husband started his treatment last Friday!  We are so excited!  He is having trouble sleeping and having slight headaches, but I have no doubt he will be virus free in a few weeks! 

[Ruthie]

Congratulations!!!

[darlynn]

Thanks, Ruthie!

[elcidms]

Darlyn,

Congratulations on being virus free at 4 weeks!  I've found Advil works for the aches and especially the headaches.  Ruthie suggested drinking a lot of water...Propel flavored water is a good alternative.

Good luck during your treatment.  I'm 56 and have had this disease for almost 35 years.  Like you I'm in my 4th week and virus free (found out today).

Hang in there!!