Another "new here", but no stranger to Hep-C

[DD1369]

Hi all,

As per the subject line, I'm new here (just registered)...but have been lurking around the forums here for quite awhile.

Like many you, I'm a 1a, and have been through multiple rounds of treatment.  ...as for me, I've been through the mill 4+ times over the past 20+ years. 

But hey...hope springs eternal!  I just started on a new 24-week course of Harvoni back on December 4th...so here I go again!

I'm now 65, and after adding up all the time I've spent on various Hep-C regimes, I was surprised to find that I've logged more than 220 weeks of various Interferon-based treatments to date:

• I started with straight interferon-A in 1991.  It was very early days in the treatment of what had been known as Hepatitis "non-A/non-B", and they initially tried me on 3m units for 3-4 months.  When my liver panels stopped improving, they bumped the dose up to 5m units for another 3 months.   Whatever, it didn't work...I never cleared.
• Years later, once they came out with the newer combo therapies, I tried a 48 week course of Peg-Intron+Ribavirin.  Devastating side effects for me, but I did clear at around week 40...only to have a VLC of 2m+ two weeks after completing the treatment.
• Then in 2004, I was selected as a participant in a clinical trial for Pegasys.  The various cohorts were randomly selected, and I was placed into cohort that received 72 weeks of Pegasys+Ribavirin.  The treatment called for "front-loading" the 1st 4 weeks with double doses of Pegasys.  Side effects were bad, but nothing like what I experienced with Peg-Intron.  I cleared after 12 weeks, and we were really hopeful we had it nailed.  Unfortunately two weeks after stopping treatment my VLC was 4m+.
• Because I had cleared completely during the clinical trial, my doctor suggested that I consider restarting the Pegasys treatment, and then once my VLC cleared we could scale back to a maintenance dosage.  Sooo...once more into the breach, and I immediately started in on another course of Pegasys+Ribavirin.  However after 3 months I still had not cleared (as I had previously), and my VLC was no longer declining...so we stopped.
• In the 2nd half of 2012 I started on a 48-week course of treatment with Telaprevir+Pegasys+Ribavirin.  This time I cleared within 4 weeks.  Side effects were pretty bad (as usual), but this time I was so anemic I couldn't walk up two flights of stairs without stopping half-way up to recover.  However I was sure that this one was the "cure", and decided to just kept pushing through to the end.  Unfortunately within 2 weeks of stopping treatment my VLC was 2m+, as in previous treatments.

Thank heavens I have great health insurance at work!

I'm finding the Harvoni side effects to be very different from what I've experienced in the past.  Having said that I'm also finding that, while not as physically distressing...I'm really struggling with the headaches, fatigue and nausea.

I see from reading through the various online forums (here and elsewhere) that the side effects from Harvoni vary greatly from one individual to another...and that they tend to modify themselves over time.

I'll just have to see what happens.

Still, the meds are covered by my insurance, and I'm told that folks in my situation are looking at a 98% possible cure...can't be seen as anything other than a blessing!

Best of luck all...I'm confident that your cure is just "down the road" a ways, and that we will get there soon!

[Mugwump]

Ditto to being new to this forum. 

Sorry to hear that headaches and nausea are causing you and others who have been through this as long as I have some serious issues.

I would guess that the headache effect might be associated with something similar to mild hypoglycemia depending greatly upon the liver's ability to metabolize essential sugars for the brain. I am experiencing some very mild headaches at the end of week 4 on harvoni.

So here is hoping that my blood cell counts are not a concern this time around as the use of ribaviron had to be reduced during the last three months of my original treatment due to dangerous low blood cell counts. I never did completely clear the virus but did achieve a 10 log reduction of VL after 24 weeks of treatment with interferon.

When I was treated with interferon and ribaviron in 2004 I became so weak post treatment that my back gave out and I required a short session of morphine to overcome extreme leg cramps and pain caused by severe spinal stenosis above lumbar 4.

Since that time I have avoided the use of any pain medications altogether and instead undergone athletic steroid injections directly in my back to get myself working again. I am hoping that if harvoni clears my HCV and my strength returns again that I will be able to finally be able to be gainfully employed for more than just a few days a week at a time.

I hope we all clear the disease this time around and that this method of treatment is a permanent cure and thus becomes viable for all with this cursed affliction.

May your headaches clear soon and you and others start feeling less ill on this treatment.

My level of strength has returned and I am not using my cane in the past week, the headaches I am getting from this treatment fortunately have become a minor issue for me.

Regards
Eric

[Tutu]

Welcome mugwump and dd1369!  Sounds like you have both been through the wringer!  I chose not to take treatment when I was diagnosed in 2005 ( had since early 1990 but never diagnosed). My ALT and AST were just slightly elevated and my VL load has never been over 2 million which my Dr said was great I have had 3 biopsies 1st being a 0 2ND was an F0/1 and this last one was F3/4 so he decided to try me on S/O but insurance denied it twice, so then he spoke with others and decided to try to get the Harvoni approved.   So far so good the headaches in the beginning were the worst side effect that I experienced but I have found that keeping hydrated is the key to keeping them away the fatigue comes and goes but I try to slow down when I feel my battery running low I have another week of the 1st 28 day course started on 12/9 then blood work and then only 8 weeks to go!  I am super excited for all of us!  Good luck on your journey stay in touch!

[Mugwump]

Welcome mugwump and dd1369!  Sounds like you have both been through the wringer!  I chose not to take treatment when I was diagnosed in 2005 ( had since early 1990 but never diagnosed). My ALT and AST were just slightly elevated and my VL load has never been over 2 million which my Dr said was great I have had 3 biopsies 1st being a 0 2ND was an F0/1 and this last one was F3/4 so he decided to try me on S/O but insurance denied it twice, so then he spoke with others and decided to try to get the Harvoni approved.   So far so good the headaches in the beginning were the worst side effect that I experienced but I have found that keeping hydrated is the key to keeping them away the fatigue comes and goes but I try to slow down when I feel my battery running low I have another week of the 1st 28 day course started on 12/9 then blood work and then only 8 weeks to go!  I am super excited for all of us!  Good luck on your journey stay in touch!

Yes being well hydrated seems to help greatly, I am also seriously thinking of dropping drinking any coffee or tea, (as I have my morning cup) well at least a major reduction in my intake of said drug for the duration of this treatment.

One should not forget that too much coffee and tea are also known to cause headaches and an addiction, add to this that having too much caffeine is the equivalent of constantly dosing oneself with mild diuretics.

Just my two cents and I am sure the coffee industry will not like this, but all one has to do is watch the morning line ups at drive through coffee slinging shops to come to some conclusions about the effects of caffeine on the wallet and brain of human beings. ;-)

Cheers
Eric

[Doluska]

Welcome to forum and good luck with the treatment! It looks that I am the only one on S/O plus riba on this forum. Most of Americans moved to Harvoni. For me - it is plan B. Still, I am hopefull that 12 weeks of current treatment will cure me. I am amazed by poer and patience of all of you! It gives me hope. D

[DD1369]

Just wondering if anyone else is on a 6 month course of Harvoni. I've been through quite a few of the threads here, and all I've seen are 8 and 12 week treatment plans.

JQ...

[Mike]

Hi DD1369,

I was part of the Peg-Intron+Ribavirin clinical trials  (I was in the weight based wing) and that stuff about killed. Of course, being a GT 1a, I failed; I was just glad that I got through it!

I started SOL+INTF+RIBV in January 2014, and cleared the virus in a couple of weeks (starting VL was 9 million). Completed treatment in April and SVR12 in July, with SVR24 in October.

Having completed a prior INTF+RIBV combo, which had it's own set of side effects (which were terrible), I did notice a headache when taking the Sovaldi.

It dissipated after about 4 weeks.

I found that Tylenol really worked - as did Tramdol - both of which were cleared for use by my GI, pharmacy and Gilead.

I also drank tons of water.

My theory is that the Sovaldi kills the virus so fast that you're left  with a bunch of 'HCV carcasses' circulating in the blood stream (until filtered out), thus causing the headache.

I don't have any research that suggests this; but it is my belief that this is what caused my headaches.

Regardless, knowing your tx hx, you sound like a real trooper and you should sail through this once your body makes the adjustment.

Here are the tx guidelines from Gilead regarding Harvoni:

DOSAGE AND ADMINISTRATION

Recommended dosage:

One tablet (90 mg of ledipasvir and 400 mg
of sofosbuvir) taken orally once daily with or without food

Recommended treatment duration:
 
 Treatment-naïve with or without cirrhosis: 12 weeks
 Treatment-experienced without cirrhosis: 12 weeks
*Treatment-experienced with cirrhosis: 24 weeks
 A dose recommendation cannot be made for patients with severe
 renal impairment or end stage renal disease


Best wishes, Mike

[Lynn K]

Hi DD 1369

I am on Harvoni for 24 weeks. Started 11/18/14 will take last dose May 4th 2015 still a long way off.

I am genotype 1a diagnosed with cirrhosis Jan 2008 and a 3 time null responder to interferon based treatment. I also relapsed on a 12 week treatment of Sovaldi Olysio last spring. Working with my doctor to add Ribavirin based on my treatment history my thinking is we need to throw everything we have at the virus.

Mild headaches been kinda tired last couple of days have been asleep more than awake but hopefully I am recharged now.

Just finished week 6 today

Good luck hope you beat the dragon

[edmed]

hi all,
WOW, I feel right at home because I can relate to everything being said here in the forum. I hope and pray this is the smoking gun we all need to put this giant gorilla down for good. I all way believe that someday a miracle would take place in my life and in the life of others living with this virus. All past treatment for hep c have been totally brutal on my body, mind, and my spirit but I've allways had hope on my side.

I'm 52 year old and I contrated hep c sometime between 1979 to 1984. Living with gorilla for a long 30 years and cant wait to finely beat this disease .  If all I have to do is put up with are some headache here and there then I'm ready to fight to the end and achieve a virus free new life.

Think Positive
  Ed

[badbradley]

Hi Ed,
     Glad you found your way to the Forum! I am also 52 and contracted HCV in 1983. I am finished with treatment - waiting another 6 wks for SVR12 (hopefully).
Undetected at end of treatment. Fortunately I did not have to endure previous treatments. Am praying also for everyone that this is the silver bullet! Time goes quicker than you might think on treatment. Eat healthy, drink lottsa wata and take your medicine at the same time everyday!! Best to You!
                                                                             Brad 

[sunrise]

Hey Brad
        Do you get pain on your side?

[badbradley]

Sunrise     I  have been experiencing some pain in the lower right quadrant(God forbid I should exclaim liver pain right)? I notice it more when I don't eat as healthy as I should. I slipped big over Christmas. OUCH!!

[sunrise]

Ok just wondering. I know I'm not the only one. Just figure it is damage that wont go away.  Guess it's something I will learn to accept.  I was hoping it would be gone by now. Thanks Brad..... looking forward to our tests coming up U D!!!....Sunrise

[JillLynn]

yep...looking forward to you Sunrise and Brads test being UD!!!   two of my good buddies on here!
always so many new people which is nice to see too.......but it's hard to keep up with everyone.     
2015 is our year!   I'm feeling it for us all!

I can't believe I have a belly gut now.....oh well.....I'm sure I'll lose it once off the harvoni.    Just not used to feeling a muffin top over my jeans.    7 lbs on 5' is ALOT!    But i'm feeling great today praise God!     

[BarbG]

Hi all,
I just finished week 2 of my 12 weeks Harvoni treatment.  I had headaches for the first week-felt like bad tension headache, but was not relieved by self massage which usually helps.  They have lessened greatly, and I agree with everyone here about water.  I measure my intake, only way I know for sure I am hitting my goal.
Second day I had horrible stomach cramps, kept me up most the night, so felt dreadful the next day.  But it has been pretty much a cake walk this past week.  I am used to 35 years of fatigue, so hardly noticed the extra tiredness.
I am seeing my fine medical crew today, believe we are going to do a blood draw so hoping for good news.
I was treatment naïve, have 10 million+ viral load. Genotype 4B, but we decided to try the Harvoni.
Because really, what have I got to lose at this point?
B

[DD1369]

Sunrise:  Ah, that would be a yes to the side pain for me as well, but TBH it's pretty minor.

The headache/fatigue/nausea are more "noticeable" than the side pain, but really nothing compared to previous Tx 

Speaking of complaining, the past 5 days or so the skin on my forearms and the back of my hands is starting to itch...a lot!  I wasn't aware that itching was one of the SEs from Harvoni.

Ah well...it is New Years Eve down here in Wellington New Zealand (visiting with family)...so here's wishing you all a terrific (and at some point undetected) 2015!!!

[badbradley]

   
2015 is our year!   I'm feeling it for us all!
   

2015 IS OUR YEAR!