Aa
Aa
A
A
A
Close
Avatar universal

Just got approved!

After 41 years, and being a treatment naive patient, I was just approved today for Sovaldi/olysio.
It is sort of surreal for me. I never thought  a cure would come, and I"ve lost some friends along the way.
I am both grateful and scared. I need a day to let this all settle.   I am a bit worried about side effects since I
Have a very stressful job.  I have LTD insurance in case.  I have waited so long for this that I want to give
Myself the best chance for healing.  Any advice from those who have started would be appreciated.

Love to all,

Libsy
16 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Yes! My vision is suddenly clearer after two days. I took my car in for oil change and was told to return in one hour. Even though I put on 70 SPF block, just going next door made my skin hurt from 2 minutes in the sun. I think this will be hard for me, but I am on my way!  So glad you feel the blanket lifting -- now 8 feel it too.

L.
Helpful - 0
Avatar universal
That is the attitude!  Go get that dragon!!  We all have a dog in this fight, whichever combo we are on.  

On to SVR, All!!!  P
Helpful - 0
Avatar universal
Started sovaldi/olysio today.  Before going into the doctor's office for instructions, I sat in my car and reflected on my life in disease. I literally thanked the dragon for letting me live to see this day, and I just sat there alone for awhile just taking it all in.  First pills taken 3 PM and I swear to you that at 5 PM a fog that I never realized was in my field of vision, suddenly lifted.  I thought it was my imagination, or some flight to Heath, such as one experiences after a good therapy session.  But, no, it is very real.  So far no side effects, but I live in south Florida, so sun exposure may be an issue.  I stocked up on  sunscreen and I can swim at night.  I will keep y'all posted on progress. Hardest part for me is that all the supplements I used to stay lace are now forbidden for the duration.  

Thanks to all who offered support and encouragement and my wish that we all become dragon slayers.

L.
Helpful - 0
Avatar universal
The studies do not show those kind of stats for people who have been null or non-responders to past treatments.  It's still a high rate of response, but not the numbers 97-100% cure.  I cannot do the Olyssio because of my exposure to Telaprevir and the non-response/null response that I had at that time.

Susan400
Helpful - 0
Avatar universal
I would love to have a doctor say he can cure me, but alas, sometimes it seems they are more cynical than I am. I'm approved for Sovaldi but denied Olysio pending Q80K results so I feel both excitement and trepidation. It is so good hearing you all talk about your treatments. I've had hcv for around 40 years and have had cirrhosis for 2 or 3 years now and am 1a plus tx naive. If I don't get the Olysio, I've decided to wait for the sofosbuvir ledipasvir but the doctors are all already so very busy that I dread getting in line again.

My feeling is if I can just get rid of the virus, the cirrhosis will stop and then reverse. I know the futility in such hopes but regardless, believe it will reverse enough to make it a few more years down the road.
(I'm 67 already.)
Helpful - 0
Avatar universal
Was up all night w. Both excitement and fear. I just need to sit with this for a bit. My main concern is I don't trust the studies because of the strong link to the money.  We are their ticket to fame and fortune. I will be positive but hu,ble. After all, I have survived this for a,long time with good living, so I want to keep doing that. What I don"t like is doctors that say I can cure you.  I need to take some responsibility for my health and trust the power that has kept me going all these years.
Helpful - 0
683231 tn?1467323017
Maybe a little more energy but who knows I drive myself hard working 2 weeks in a row including weekends.

And even if the virus is gone I still have cirrhosis but at least hopefully the continuing liver damage from hep c has stopped.

We draw the line here no further!

best of luck to you
Lynn
Helpful - 0
Avatar universal
Thanks Lynn. I am hoping you are free!!! 86% are good odds. I am CT. Doc said approval for  tx was contingent on me not having the Q80Kpolymorism. They are learning new things daily.
Do you feel better?
Helpful - 0
683231 tn?1467323017
Hi

For folks like me with cirrhosis & null responder not quite 97-100% more like 86% but definitely better than anything out there before now. Also thinking positive.

I finished my 12 weeks on June 10th little to no sides do remember sun feeling a little "stingy" "burnie" "tingly". Waiting for my 12 week post in early September to see if I made it to SVR.

Good luck
Lynn

Some more data for fans of data

http://www.jnj.com/news/all/Final-Data-from-the-Phase-2-COSMOS-Study-of-Janssens-Once-Daily-Simeprevir-in-Combination-with-Sofosbuvir-Presented-at-The-International-Liver-Congress-2014-of-the-European-Association-for-the-Study-of-the-Liver-EASL

SVR12 Among Patient Subgroups with Genotype 1 HCV and METAVIR Scores of F0-F2 in Cohort 1 of the COSMOS Study*

IL28C CT 100 %
IL28B TT 67 %

SVR12 Among Patients with Genotype 1 HCV and Advanced Liver Fibrosis in Cohort 2 of the COSMOS Study*

GT 1a without Q80K  88%
GT 1a with Q80K  100%
GT 1b  100%
IL28B CT  100%
IL28B TT  100%
METAVIR F4 (cirrhosis)  86%
Helpful - 0
Avatar universal
I am Q80Kpolymorphism free and I am a CT...

Factors Predictive of Response to Simeprevir Plus Sofosbuvir:
After excluding patients with nonvirologic failure, subgroup analysis identified factors associated with lower SVR12 rates

* Genotype 1a HCV with Q80K variant present at baseline
* IL28B TT genotype

All 3 patients who relapsed after end of treatment had genotype 1a HCV with Q80K variant at baseline and IL28B TT genotype
Helpful - 0
Avatar universal
I thought this treatment was 97 to 100% cure for all, tx naïve and tx experienced. The Q80K polymorphism brings success rates down: I don't have that mutation. I prefer to be positive in my expectations. .
Helpful - 0
Avatar universal
Congrats.  Actually, treatment naives are the easier group to clear the virus.  It's the cirrhotics and previous non-responders that have a worse success rate.  You being treatment naive, have a very excellent chance at clearing the virus.  Susan400
Helpful - 0
Avatar universal
and congrats also to Pamelajean1 !!!
Helpful - 0
Avatar universal
I feel your excitement.
Currently I am on that combination.The first week, I did feel a surge of energy., however, I do have somes sides. I agree with Candyce1953 about the fatigue. It hits me in the afternoon. Good strong coffee helps. I also have some brain fog. It comes and goes. A good night's sleep is usually what helps to make a good day. Tonight I take my 17th pill. I am hopeful with time I will see more improvement. But overall, I do feel better. This treatment is easier than the last 2 standard of care treatments with interferon!!!

Good luck Libsy1 and congratulations Candyce 1953
Helpful - 0
Avatar universal
I had hep c geno 1b, treatment naive

Had it  for 43 years!

Just cured Sovaldi olysio
Finished May 8, 12 week SVR permanent cure, feel great!!

Biggest side effect was very very tired
Good luck!
Helpful - 0
Avatar universal
My experience was one of amazement, relief and gratitude. On the second day I felt as if a blanket had been lifted from my head...my eyes even felt clearer. On day 7/8, I experienced nothing short of a miracle. I woke up feeling good, as if I was a new person. My energy increased, I had a sense of well being...my appetite went thru the roof and I ate everything in sight, lol. I felt a sense of calm. Symptoms started to decrease if not disappear. By week 3/4, I was sleeping like a baby.
I would say the biggest 'effects' were hydration....I drank a ton of water. And photosensitivity....after just minutes in the sun, my skin would 'tingle', but significantly decreased after 4 weeks.
We are all different but even reading others experience, this combo is truly a miracle. Good luck...you are on your way!
Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.