My story

[Toni]

Hi I'm so glad I found you.  Talk about feeling like an island.  I am 63 & was diagnosed with Hep C about 10 months ago with a regular check up due to my being a baby boomer.  My doctor feels it was recent due to my low levels of everything but I read in one of these posts that I could have had it for many years.  My first liver blood test showed elevated enzymes when I was 27.  A biopsy @ that time  showed no Hep C?  This was in 1979.  Recently I had elevated enzymes, & hep c was confirmed.  I am a 1b,  my viral load is just below.. something like 500  Another biopsy in November shows no cirrhosis & no fibroses  My doctor felt I would not qualify for treatment, but I pushed & was approved for Havoni for 12 weeks.  The meds should be delivered today.  The pharmacist advised to start first am & take with my prescription Previcid. My doctor seems to have fallen into a black hole.  I have struggled with tiredness over the past 3 years.  I was diagnosed with Hypo Thyroid & take 50 mg of Synthroid.  I have custody of my three grand boys.. 8, 6 & 3.  I hope I am one of those who gets energy when I take the Harvoni. LOL.  Or I can nap when Mikey (3) does.  I would appreciate any words of wisdom.  Everyone have a wonderful day or night depending on where you are.

[KimInTheForest]

Welcome to the forums, Toni, and to the Harvoni journey! That is so great that you got approved quickly and without having to battle your insurance company.

Drink plenty of water to reduce any side effects you may have. Many people have no side effects on Harvoni. I think the only Harvoni side effect I had was the "Harvoni High" - and that was welcome! My other side effect issues came from the ribavirin, which was part of my package. But you don't have that to cope with, so it should be smooth sailing for you.

Keep us posted
kim

[beto]

You are lucky Toni,

Many folks have to struggle to get the meds as I did and I had a cirrhosis score on my fibro scan, very elevated AST/ALT and a long history of symptoms.  If your VL is only 500 then you will get the virus knocked out of you in short order.  You sure it is not 500 K?  Even that is not that high.

Sounds like your biggest issues are those little rascals you are rearing  .  Haha, a blessing however, a challenging one.  Harvoni will rev you up most likely.  Keep us informed.  You will probably kill the dragon in the first week.  12 weeks also, amaising...good for you.  You are not an island anymore.  Also, plenty of good reads right here on hep central..laughs too...peace out.

[Else]

Congratulations, Toni!  And welcome.

Good advice already posted.  My experience was that the common side effect of headache was effectively controlled by water.  If I woke up with a headache, a good 8oz guzzle of water worked like aspirin.

I also had the "Harvoni High".  Increased energy and appetite, elevated mood.  Best of luck on your treatment!

[jakas]

Hi
I had headaches for the first month on Harvoni but now after 64 days its not there.
Water helps. Just plain water is the best.
No Harvoni high here. Still tired but will get there hopefully 3 weeks more to go

[BillT]

Hi Toni and welcome to the forums,
                             Congratulations on the approval.One thing that didn't get mentioned was that the 1b is the easiest to treat,and the success rates on these new drugs are amazing.It sounds like you're in great shape for the journey so keep us posted on how you're doing.There's a lot of great,knowledgable,people here so if you have any questions about anything just ask.You're not alone in this.

[Toni]

Thanks everyone for the support.  It's been 12 hours since my first pill..the good news I have energy.  Did get the headache, but water did help a lot.  I do have concern about my Dr.  She is part of a premiere health care network.. I've asked her what comes next?  I received  no answer via my chart.  From all the info I've read it seems as if bloodwork is done regularly.  Is the specialist not a part of that?  Should I contact my regular Primary Care?

[BillT]

Hi Toni,
          Stay on the meds and see if you can co-ordinate your treatment with your primary.Some people are getting tested the first time at 2 weeks and some at 4.I got tested at 4 week,8 weeks,and 12 weeks.The testing seems to depend on the doctor.I would talk to your primary care and see what they can do.Just stay on the treatment,stay the course,and don't be shy about questioning your doctors.

[Else]

Hey Toni - check out this link.

http://www.drugs.com/interactions-check.php?drug_list=3567-16903,1433-849

Since your liver doc (G.I. or hepatologist) is missing in action, I would run this by your primary care physician at the very least.  Or perhaps call Gilead from your package insert.  Or get a second opinion from a pharmacist.

You don't want to reduce the effectiveness of the Harvoni if it can be avoided.

[HazelAustralia]

Welcome Toni, and well spotted Else...

[Scoutdoy]

Congrats tony, I got tested at 4,6,8 and 12 weeks. The only side effects I had were slight headaches the first few days, due to lack of water. After that I felt fabulous the rest of the treatment. Good luck to you, welcome to the cure train


Scout

[jakas]

I got tested after 4 weeks of starting treatment and today the doc said EOT 4TH March NEXT test but the real test which matters is 12 and 24 weeks EOT ( end of treatment)

[lporterrn]

Welcome Toni - maybe you (and others reading this) will tell your story after you are done with treatment (hopefully celebrating good news) https://www.hepmag.com/category/hep-stories

[MaryC]

Hi I'm so glad I found you.  Talk about feeling like an island.  I am 63 & was diagnosed with Hep C about 10 months ago with a regular check up due to my being a baby boomer.  My doctor feels it was recent due to my low levels of everything but I read in one of these posts that I could have had it for many years.  My first liver blood test showed elevated enzymes when I was 27.  A biopsy @ that time  showed no Hep C?  This was in 1979.  Recently I had elevated enzymes, & hep c was confirmed.  I am a 1b,  my viral load is just below.. something like 500  Another biopsy in November shows no cirrhosis & no fibroses  My doctor felt I would not qualify for treatment, but I pushed & was approved for Havoni for 12 weeks.  The meds should be delivered today.  The pharmacist advised to start first am & take with my prescription Previcid. My doctor seems to have fallen into a black hole.  I have struggled with tiredness over the past 3 years.  I was diagnosed with Hypo Thyroid & take 50 mg of Synthroid.  I have custody of my three grand boys.. 8, 6 & 3.  I hope I am one of those who gets energy when I take the Harvoni. LOL.  Or I can nap when Mikey (3) does.  I would appreciate any words of wisdom.  Everyone have a wonderful day or night depending on where you are.

Welcome Toni!  I, like you, was dx'd during a routine physical in March of 2015. I am now 59...closing in on the big 6-0! It sounds like you have moved past the 'shock' stage pretty quickly, and worked closely with your provider to push the approval for Harvoni which is so good to hear! 

Sorry to hear that your provider is stepping back now that you have started the medication.  I must admit that my Hepatolgist and his office was never great at getting back to me once I was on treatment either.  I was rx'd Sovaldi and Daklinza (I have GT 3a).  Sovaldi is one of the drugs in Harvoni also.  I obtained my meds through a University Medical Center's Specialty Pharmacy - they deal specifically with Hep C, HIV and Cancer meds.  I was assigned both a 'Specialty Pharmacist' and Technician - both specialized in only Hep C meds.  They were both easily accessible and fabulous!  They would also contact the Hepatologist's office if needed.  I mention this since it sounds like you may also have a specialized pharmacist and wonder if you should see if this person could more effectively advocate on your behalf?

When on treatment, my labs (CBC/diff, Metabolic profile and VL) were tested at 4 weeks, 8 weeks and EOT (12 weeks).  I was tested at 4 weeks post tx, and will be tested again at 12 and 24 weeks post treatment.  My VL has been negative since 4 weeks into treatment.  SE's for me were very minimal...mild headache (water helped with this) and some increase in energy level (this was a good thing).  The headaches stopped around 1 week post treatment.  I am approaching my 12 week post treatment blood draw (1st week in March) so am anxiously hoping my results remain negative!!

I wish the best to you.  You will beat this!  I am happy for you that you are now on your path to recovery!

Mary

[CureSeeker]

My Hepatologist followed the drug companies protocol - basically once a month until 1 month post treatment for Sovaldi & Ribavirin (GT3a).  Next came 3 month, and in 3 more months I will have 6 month then 1 year, and once a year for 5 years.

Perhaps recommended protocols change with the differences in drugs and drug combinations? 

It would make sense that it might.  Like Ribavirin is pretty nasty if you happen to have a bad reaction to it, whereas others might not cause nasty reactions that need close monitoring.

Also, participation in programs like clinical trials could require variations in monitoring, I would imagine.  Another variable could be the condition of the patient when starting treatment, like cirrhotic vs. non-cirrhotic?

Sometimes the drug companies post the protocols on websites, like I once found for the Sovaldi & Riba I was prescribed from Gilead.  Unless your provider is amazingly busy, they should be able to just tell you, once you ask the question.

Best wishes on your success!