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Starting Sol/Olysio this next Tues.

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Posted 8/16/2014 5:48 PM (GMT 0)
Hello, I am so pumped, I talked to a drug company nurse and my meds will be here to start Tues! What I was wanting to ask the ones that have treated with this combo was a few basics, Of course the nurse covers some of that stuff, but I think the best info comes from these forums and experience. Does anyone take them together? What time of day is best for you? I know to drink lots of water and I love Yogurt so I will live on it and vegatables probably. If you have any tips I would love to hear them and thanks for your help. It is a very exciting and scary time for us that has not yet treated!
Posted 8/16/2014 7:28 PM (GMT 0)
My partner Mike took your combo March- May of this year.

He was undetected week 5.

His only side was sun sensitivity.

Mike has had chronic skin sensitivity throughout his journey with liver disease...many do...itching, various rashes, skin cancers which may or may not be relatedd or its just him.

He is caucaian of Irish descent...and his dermo says living in FL has not helped skin cancer stuff with his other risk factors. He got some long sleeved spf shirts...the sports stores sell them. Some of the golf shirt companies sare making them now too.

It is the Olysio on this combo that has the sun risk warning.

Mike had Hep C genotype 1a with failed Inf/Riba treatment in 2003. His viral load doubled last time and he was pagued by Riba rage. He had none of that this time...no grumpies, no anxiety.

It was a good protocol for him. He has labs in 2 weeks for his sustained viral response testing. He is feeling so well--best in 10 years, we are very optimistic.

Some % of folks are relapsig but our hep promises new and even better drugs are due out soon.

He would need to treat right away as he is post transpant and has fibrosis stage 3 in the new liver. His Hep came back quickly.

He wants to do whatever it takes to stay well for as long as possible.

Welcome aboard. Let's hear from you during treatment.

Hugs,

MamaLama
Posted 8/16/2014 8:29 PM (GMT 0)
I did the Sol/Oly/RIBA treatment. When I started on 1/3/14 there was not a lot of info on the how's. I took both plus 1/2 of the RIBA in the morning and the second half of RIBA in the evening.

The primary sides I experienced were fatigue, sun sensitivity and some difficulty sleeping. I was able to work 40 hours a week thru the entire treatment. Did your doc test you for the Q80k mutation? This impacts the efficacy of Olysio. My journey had a happy ending achieving SVR 12.

Good luck and beat the dragon.
Posted 8/16/2014 9:59 PM (GMT 0)
Yes I was tested for the Q80 first thing and it came back negative. My solvaldi approval came through and OLysio was denied because Doc did not give them enough info on regimen. My doc quickly resubmitted and one week later I was approved for Olysio. And I have so many skin rashes and bruising the last few years, I am a true redhead and light skin. I was so afraid that I would have problems with treatment, it is so good to hear that your partner made it through the treatment without rashes. I too am irish decent with an irish name! I am 1A and have a 12 million viral load and have been up to 28 million. I am so ready like we all are to get rid of this darn pest! It is such a better time to treat and I am so pumped about it. Thanks for your feedback. The nurse says to take them in the evening is best because one of them makes you tired during the day and I forgot which one she said. Oh well trial and error I guess, I just do not want insomnia! thks again and I will be back on during this for sure.
Posted 8/16/2014 11:39 PM (GMT 0)
Brenda...with fair skin Mike also got a pair of spf gloves that fishermen use. We found them at a sporting goods store. They have nonfinger tips. He has had bover 50 basal cell spots greated, toms ofnpre cancers and 3 squamous cells treated with Mohs surgery. We also hasbadditionaltinting done on the car. We live in FL - the Sunshine state.
Posted 8/16/2014 11:41 PM (GMT 0)
I forgot...hats.

He has had cancer on his ears. Maybe you wear your hair long. He gets sunburn in his part.
Posted 8/16/2014 11:51 PM (GMT 0)
No my hair is short and I live in NW Indiana, right over the state line from Chicago, we have had a great summer so far, the temps have been in the 70's all this week, I will watch out and I do have gloves with the fingers out. Was the skin cancers in anyway related to the hep or tx? I bet not, but I sure it did not help with the sensitive skin. I am gonna try to stay out of the sun but I do have a dog to walk in which I will do in early morning and late evening I guess. Also did he take his meds in the evenings, together, or how? The nurse was not much help, she said it was up what was best for me.
Posted 8/17/2014 4:50 AM (GMT 0)
I have to ask him. But The Sovaldi was once a day which he took in the morning _wi th Olysio and he took the second Olysio with food 12 hours later.

I want to check with him tomorrow to be sure I remembered correctly.

ML
Posted 8/18/2014 3:58 PM (GMT 0)
So, tomorrow is the big day!!!! Good luck and keep us posted on your progress.

willy
Posted 8/18/2014 8:01 PM (GMT 0)
Yes, tomorrow is the big day! I am so excited, been waiting for a few years for no interferon treatment! I almost did it a few years back. I had a nurse order it for me in 2009 and I would not do it and she got so hateful and mad. I just felt like something would not go right, it was just a strong gut feeling. I am so glad I waited. I was F-2 then in a liver biopsy so I knew I could wait, but then I think they was working with the drug companys and got a kickback or something because I did not need to treat right away. Wish me luck!
Posted 8/18/2014 10:30 PM (GMT 0)
I am also F2..

Good luck and keep a positive attitude. water, water, water, water...
Posted 8/21/2014 5:26 PM (GMT 0)
Hello Brenda,

Did you start the treatment?
Posted 8/22/2014 10:32 PM (GMT 0)
I am on my third day on treatment. I have not felt anything close to a side effect. I am so happy to be able to take this treatment. And I am so glad I did not take the interferon treatments they have tried to get me to do in the last 5 years, I just did not feel right about it. This is just the third day, but absolutely no problems!
Posted 8/23/2014 1:14 AM (GMT 0)
That is fantastic. keep us updated.

If my blood test come back without an improvement, I will have to add the interferon (I am GT4 and the sov/rib is an alternate to sov/rib/interferon. My fingers are crossed. Best of luck to you.
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