Started Sovaldi/Sofosbuvir w Ribavirin GT2 today

[JimmyMose]

Yesterday at my HEP clinic I got the good news, pills and started treatment today    They told me I was 1 of only 10 starting tx today and was very lucky as the others had more serious conditions including some with decompensated cirrhosis. A few others had started within the past couple of months with critical last chance need.  A few are getting Sovaldi, Olysio w/wo RBV.

They said because I was F3/F4  low platelets 88, high Fib-4 and  APRI, and my doctor strongly recommended treatment i got in.  They also mentioned other reasons like my treatment knowledge (which I learned quite a bit of from here)and my persistence in asking about treatment was a factor too.   BTW my pills came in a VA bottle labeled Sofosbuvir NON FORM  no mention of Sovaldi but was given a Sovaldi booklet. It's rumored the VA is paying $650 a pill. Low income so no copay.

Feel very lucky and wouldn't have had a problem waiting another 6 months or so for more serious patients to get tx first,  Now my prayers and thought are with and for those who are in a more serious condition.

The Va is a mile or so from my house.   Received 7 SOV pills 162 RBV.
Treatment plan
Day 7 CBC & liver blood test (1 hour before clinic appt) if OK 7 more SOV
Day 14 CBC & liver blood test if OK 14 SOV  VLoad 6 days for results
Day 28 CBC & liver blood test if OK, 7 SOV, 162 RBV.  VLoad 6 days for results
Day 35 VL is undetectable 21  SOV          
Day 56 CBC & liver blood test if OK, 28 SOV, 162 RBV
Day 84 CBC & liver blood test VLoad 6 days for results
12 weeks post tx VLoad 6 days for results SVR

Thanks to everyone who has posted treatment and side affects suggestions.for others in the past. I have read and are following many of those.  

DAY 1  Just a few very mild symptoms and no problems.   If I have any serious concerns or need help with side effects I will ask.

Many times some members will ask questions but not provide many details.  That results in more comments asking for more specific details or searching though their prior posts if not listed in status or about me or a journal etc.  I personally find the trackers not the easiest to use, requires specific numbers etc to be manually entered and notice most members don't use them and/or update them.  NO criticism is intended as many members have limited time,  are busy offering suggestions to other members or have other priorities.

For me using journals seams to be the easiest way to provide updated information that can be found easily. It's easy to copy and paste labs reports from my electronic health record. Provide routine updates about my Hepatitis C, treatment and list pre treatment history.

Don't hold me to daily updates but I will try to do my best.   Here is the direct link to my treatment journal.  

http://www.medhelp.org/user_journals/show/1050903/SOV-RBV-GT2-Treatment-Journal-April-3--2014-

[mike716]

Way ta go, Jim! Looking good.

Fingers crossed on your 2nd week VL.

Mike

[JimmyMose]

Just to Update 1 week labs  FYI

Excellent results that moved to normal
ALT             46 units/L 10-55 150H  -104  
AST           28 units/L 6-32 109H -81
NEUTROPHILS 3.3 K/mm3 2.4-6.8      2.3L  +1.0

Expected results as it will take awhile to see signficant increase
PLATELETS 91 Low K/mm3 140-375 88L  +3

Expected results moderate decrease  
HEMOGLOBIN comment g/dl 13.5-17 unable to test
HEMATOCRIT 43.5 % 38-50 46.4  -2.9  
Expected results  moderate increase
BILIRUBIN 1.0 mg/dl 0.1-1.0 0.5  +0.5

Thanks again for your support and continued best wishes for all of you.
Next important date is the viral load results from 2nd week labs to be revealed on 3rd week visit.
Replies not necessary

[Livelife777]

Thanks so much to you and everyone on this forum who have been there with your help and support.      Definitely will continue to check in and share my post meds experience.    Am hoping and praying that worldwide this deadly virus will one day soon be eradicated.          ....Kim

[nan535]

Hi Kin
Congratulations on finally completing treatment. If you don't mind, please continue to let us know how you are doing and any changes in your improved labwork after stopping treatment. I would be interested to know if the improvements continue post treatment for cirrhotic patients.

Most importantly, best wishes for SVR!
Nan

[Livelife777]

Thanks so much for the info on geno 2 and cirrhotic results.   Wanted to include that my platelets were 125 starting and now up to 199,    Pretty big increase.     Also Jimmy I did  run a low grade fever, 99.2 here and there and doc said normal side affect of the RIBA.    Hmg went down to 10.5 around the  9th week and about week 11 or so up to 10.9.     So docs say that's a normal pattern around the 8th - 11 th week.     BTW on another site someone in the original trial Ribv/Solv relapsed after being on the week 8 protocol.  Very sad news. Guess that's why we are all on minimum of 12 weeks.   Have found thru treatment if I sat around and worried my symptoms were noticeably worse.    Try to stay distracted as this seems to make time fly by quicker.    Done Monday and will continue to stay informed as to how all of you are doing.           ....Kim

[JimmyMose]

Can my husband borrow some of your hgb? I tried to contact "Bones" (Dr. McCoy Star Trek) to see if that could be done;-)

BTW earlier comment "It's 12:45 AM already I better get to bed soon"
Never got to sleep until 3:45 AM up to 50 mph winds all night.  Received a call at 8:AM a friend was desperate for a ride to drug store.  Took meds with 2 for $3 Egg white Mc Muffins and free coffee.  11 AM now feel great and will try to nap for a couple hours or so...  

[nan535]

Here is the link to the actual press release from Gilead:
http://www.gilead.com/news/press-releases/2014/4/gilead-announces-results-from-phase-3-study-of-sofosbuvir-among-hepatitis-c-patients-in-japan

Highlight:
"In the study, 97 percent (n=148/153) of genotype 2 HCV-infected patients receiving 12 weeks of an all-oral regimen of sofosbuvir plus RBV achieved a sustained virologic response 12 weeks after completing therapy (SVR12). SVR12 rates among treatment-naïve and treatment-experienced patients were 98 percent (n=88/90) and 95 percent (n=60/63), respectively. Of the 153 patients who received treatment, 11 percent (n=17) had documented cirrhosis."

That is an amazing result, I would say.
Nan

[nan535]

Can my husband borrow some of your hgb?  :-)  Seriously, hemogloblin starting out at 16.7 is great. I don't think you will have any problem with ribavirin caused anemia.

I think you are starting on treatment with great labwork results already.  Your platelets are a bit low but someone else posted (I can't recall who at this time) that after starting treatment with Sovaldi his/her platelets went up to 110 in 2 weeks. So I think that bodes well for you too.
Your billirubin and creatanine are already in great shape.

So I predict you will do really well on this treatment!   Can't wait to read you are UND and then SVR in the not too distant future.  Good luck!

Nan

[mike716]

Congrats on starting Tx, Jimmy. No one deserves SVR more than you, for all the good and unselfish work you've done here in the forum. I can only hope that you won't leave us once you're cured.

I'm impressed by your treatment plan. You have some serious people working with you.

I will be following your journal, which BTW is a good idea.

Mike

[JimmyMose]

Thank you everyone. It's great to know you are rooting for me as i do for you to root out this nasty HCV Vermin.

Day 2 not bad at all.  Does anyone have an opinion about my detailed journal?   http://www.medhelp.org/user_journals/show/1050903/SOV-RBV-GT2-Treatment-Journal-April-3--2014-

Groupergetter  Actually yesterday that thought occurred to me.  My usual body temp is in the low normal range 96.x.  Felt like temp was closer to 98.8  for about a hour then a slight breaking relief type feeling.  Maybe imagined or real but my odds say the virus being attacked and hopefully dying.

nan535 My prayers are with you and your husband.

Hope all those trying to get the new meds are successful ASAP

It's 12:45 AM already I better get to bed soon.

[Livelife777]

Does that include cirrhotic s as well Nan?     Hope your honey is hanging in their with less effects of HE.    Having my post blood work done next Fri and will let you know how the hmg plays out.     Still at 10.9 with 3 days to go.  ....Kim

[nan535]

I think this link will bring some of you with Genotype 2 great news and hope for your own success on this treatment!

http://www.healio.com/hepatology/chronic-hepatitis/news/online/%7B7bf6cf7b-25d3-49cf-9dec-dee0b6a22ab8%7D/phase-3-trials-for-sofosbuvirribavirin-produced-svr12-in-hcv-patients

"Ninety-seven percent of study participants (n=153) reached sustained virologic response (SVR) at 12 weeks after completing once-daily therapy with sofosbuvir (Sovaldi, Gilead Sciences) and ribavirin (RBV)."

Yahoo!  That's just terrific! I'm very happy for you Geno 2's!

Nan

[Livelife777]

Congrats and good luck with the new meds.      I am geno 2 Solv/Ribv.      Can't even believe I'm saying this but 3 days to go!    It has been an interesting journey and somewhat unpredictable.     Most days can be uneventful, and others a bit more challenging.    Funny part is you never know on a daily basis whom woke up in the AM.  Found that eating often (ESP protein and fats) helps curtail nausea and blood sugar fatigue.    RIBA Rage was a new emotion for me, and exercise helps a lot with that flattering side effect.    Have had 12 weeks of treatment and time really has flown by.    Wish and hope that this will be the cure for so many having to live with this horrible disease.         Kim

[Verdugo]

Best of luck with your treatment!  Please keep us updated if you experience side effects, good and bad.  I follow G2s progress so I will be keen to hear how you feel throughout treatment.

Cheers, V.

[klonny55]

Hey Jimmy, Great News! I am gen 2 as well. I have only 22 days left of treatment Sovaldi/Ribavirin and it's been a breeze. You will do great with this!

[nursehepc]

Its shameful, isn't it, that everyone can't get these medications and that some people are and will die because they can not obtain them because of costs. Its all about money. It appears it always will be.

[nursehepc]

Wishing you an easy course of treatment and SVR soon.

I am sure you are thrilled to get this "kicking hep butt" party started! Keep us posted.

They are starting the approval process for me, but who knows when and if I will get approved (thankfully-no complaints-after 32 years, my Fibroscan was 5.3 and my fibrosure last year was F0). Given that I seemingly have minimal damage at this point, they (Coventry - Express Scripts) may not approve me for treatment - though I sure hope they do! That said, like you, if it is about treating those who need it more than I do first, by all means, they should be treated first. I am not sure this is the case, however, for private insurance.


Joanne (aka Jo)

[Giddyup5]

Congratulations on your approval.I wish everyone there were approved. We all know they should be at the V.A.
Best of luck for a successful treatment!

[Groupergetter]

Great news Jimmy, really happy for you. Look forward to seeing your labs and improved #;s.  On the way to SVR. Have you had any sensation the virus was being stopped?  Really strange, I took my first dose at 3:30 in the afternoon and when I went to bed that night around 11:30 it was as though I could feel the virus being stopped cold in its tracks.  Some headaches, insomnia, bur was able to continue working,  Hope and pray this does the miracle for you,  Appreciate all the good info you've shared with so many here.  Onward to SVR.  Congrats.

[sunru]

Good news! So happy for you, it must be a whirlwind of relief for you and having everything fall in to place so quickly. Your doctor sure sounds like he knows very clearly what the consequences are if they wait any longer at your stage of fibrosis. Not a time for you to full around.

Did you read this article?

http://www.dailytech.com/Hepatitis+C+Miracle+Drug+Will+Cost+Americans+84K+Egyptians+Only+900/article34653.htm

I thought it was interesting how they show the chemical breakdown of Sovaldi Ledipasvir and Ribavirin.

I decided many months ago, sent tons of paperwork in hopes of getting approved for a study at NIH. The nurse said it was hard to treat GT1a, Naive, and 28% Cirrhosis only. I had really forgotten about them until the doctor phoned me about three months ago and asked if I would like to show up for the final screening sometime in March/April. I gladly accepted, set up housing in DC and got a call saying we have a spot for you but there has been a delay until May. The study is the Sofosbuvir/Ledipasvir one fixed dose pill plus GS 9451 (a protease/NS3/4 inhibitor) at 2 pills daily for six weeks. So I feel ok that either way I should be able to start whatever tx it will be soon. If the trial at NIH doesn't work out I'll have to start tx at UCSF, Sovaldi and low dose Ribavirin.