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New Member (mac) on Sovaldi and Olysio, Looking for Support

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Posted 5/9/2014 4:30 AM (GMT 0)
I started Sovaldi 400 mg in combination with Olsio 150mg a little over three weeks ago to treat my Hep C, Genotype 1b. This is my first attempt to treat my Hep C which has been diagnosed for over 20 years. I never thought intereferon/ribavirin was worth the try. I have had slight headaches, some aches and some intestinal discomfort by way of loose stools. I am sensitive to sun light. It feels like it it burning me as soon as I get in direct sunlight. My lower lip felt sunburned after being in the sun and became swolen and blistered. It felt like it did when I treated it with an imuno modulator for some pre cancerous lesions. I have also developed a rash or multiple lesions which act/look like acitinic keratiosis [crust or blister, scab, slow to heal] I am wondering if anyone else is treating with both Sovaldi and Olysio. Are these common symptoms [Yes, I know that Sovaldi can make one photo sensitive and cause a rash] And, is there something that can be done for the rash/lesions? Triacinolone Acetonide Cream USP 0.025%. l Finally, I note other folks have periodic blood work. My doc said take it for 12 weeks and come back. Should I be concerned about getting blood work? Are these symptoms something I just need to live with?

Macdbmw

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This is macdbmw's post imbedded today in music's treatment blog...I copied it into a new thread. Please comment here to macdbmw and in music's thread to support music. Thanks, ML/Hep Moderator
Posted 5/9/2014 4:37 AM (GMT 0)
Hi Mac,

My partner, Mike, is on the Sovaldi/Olysio treatment. He cleared the Hep C virus by week 4 and is now on week 10.

He has had Hep C, 1a for over 40 years and was very ill. He had a liver transplant 3 years ago which cured him of cirrhosis and liver cancer, but left him with the gosh darn Hep C still swirling around.

Now he is hoping this treatment cures him of the Hep C forever...praying for sustained viral response!

He too has skin issues and is very very careful with the sun and the Olysio. He wears UV protection clothing out in the sun, always wears a hat, and found some UV gloves that fishermen use at a sporting store that he wears in the car. He keeps a long sleeved UV shirt in the car for quick trips.

With the Olysio it is imperative you wear sunscreen every day, even cloudy days if you are gong to be out side. We have tinted windows on the car, but still...for a long drive.

We live in Florida where it is full summer already so it is important.

I'm glad you re getting treatment before getting sick. Your timing could not be better. Many have passed before their old age because of this disease.

Best,
Mama Lama
Posted 5/9/2014 2:03 PM (GMT 0)
Hi Mac, Welcome. I have heard the sun is your enemy when treating with Olysio. I hope some with experience on you treatment will pop in and let you know on the labs. Very happy you finally have a treatment for your Hep C. Big Hugs
Posted 5/11/2014 6:46 PM (GMT 0)
Thanks for the comments and help getting set up. I have a winter home in Florida and live in Tennessee. I started the treatment in Florida and was under that hot Florida sun for about two treatment weeks before coming home. My hepatologist told me that a side effect of Olysio was photo sensitivity but did not emphasize the sunscreen or importance of staying out of the sun much. Nevertheless, I did utilize UV wear and sunscreen - just not enough. I did some boating on the Gulf and forgot to use sunscreen on my lips, which sunburned the crap out of my lower one. Another day I drove about 260 miles on a bright sunny day in a car with a sunroof. I got a sunburn through the sunroof which was tinted but did not have a working interior shield. That started the rash on my shoulders and chest. So to all of you who use Olysio, please learn from my experience. I am definitely going to avoid being outside for the remainder of the treatment and load up on sunscreen and UV wear when I must go out.

I saw the doc for the first time after starting treatment on 5/9/14. He felt the rash was definitely drug related and prescribed Triamcinolone 0.1%. It has worked nicely in the last two days and the existing rash is subsiding and the existing leisons are healing, abeit slowly. Blood test results show that 2 weeks & 3 days into treatment, my AST & Alt have returned to high normal. These have not been within normal range in the last 25 years. I will post my viral load as soon as I get it. Viral load pre-treatment was 3,613,793. I am hoping to get a 0!

I have BCBS of Tennessee insurance and the cost is covered except for a $5 co-pay on the Solvadi and a $20 co-pay on the Olysio. It appears the Blues are covering the off label combo with little fuss based on my experience and what I have read here. I will be 65 and Medicare eligible in July but I decided to do the treatment now because it is unclear how much of the cost Medicare will cover for this treatment and what 'treatment filters' will be placed as pre-treatment road blocks. My doc feels sure they will come up with hurdles as a cost containment measure. Perhaps, liver biopsy first, high co pay, etc.

Finally, I want to say it is great to have a group of people in the same treatment regimen to share this journey with.
Posted 5/11/2014 6:55 PM (GMT 0)
PS: I want to add a note on alcoholic beverages. I have been a daily wine drinker [two glasses to a bottle] the entire time I have had Hep C and my AST/ALT elevations may be, in part, attributable to that. I discussed this with the doc pre-treatment and he was not strongly opposed to me continuing to drink wine if I chose to do so, although he opined that it might be better if I did not. I have continued to drink my daily ration of wine. I am not encouraging any of you to behave as I have, but thought the information might be of interest to someone on the list.
Posted 5/11/2014 8:20 PM (GMT 0)
You're playing with fire, should you continue to drink. I find it hard to believe that your doc; "was not strongly opposed to me continuing to drink wine." If that's correct, he needs to learn about Hep C and liver disease. That's irresponsible advice to his patient: you.

Also, if you are as you say, a daily wine drinker, that sounds as if you can't/won't stop. Time to get clean and sober.
Posted 5/11/2014 8:48 PM (GMT 0)
If you can't put the alcohol down, then you have a problem to deal with once you clear the HCV.
Drinking a glass of wine a day is said to be therapeutic. Drinking two glasses a day is not moderation and is equivalent to three shots of hard liquor, and worse if compounded with daily use.
As a 64 year old female the effects of alcohol on your liver are compounded by age. Your immune system has a hard time dealing with the HCV. With treatment, your body goes through pains dealing with the antiviral medications and has a hard time dealing with the ribavirin, which causes most people experience anemia, reducing your bodies ability to fight off infection.
When you add alcohol to that mix, you are not adding any value to treatment.
Google "unhealthy alcohol consumption."
I hope you can replace the booze with water and good food.
Good luck.
Posted 5/11/2014 10:58 PM (GMT 0)
Hi Mac, Do you have cirrhosis or fibrosis? Do you know what grade and stage it is in? I have never known of a hepa or GI that said alcohol consumption with Hep C or liver disease is acceptable, even for a social drinker. Easy enough to have something that is not a liver destroyer when you have liver disease, right? Big Hugs
Posted 5/13/2014 4:42 PM (GMT 0)
Welcome Mac!! I am on Sov/Riba so the sunshine issue is not a problem for me. As far as the alcohol, why in the heck would you even want to compromise clearing this deadly disease for a couple of drinks of booze? I am a recovering chronic alcoholic since my teen years and the only good thing I have to say about alcohol is I'm glad I finally quit. It's really a waste of money and only irritates and inflames an already sick liver. I've lost so many friends and family from alcohol I've lost count. I will not be one of them. I'm coming up on six years sober and love my new life.

I sincerely wish you the best and would gladly give any advice on helping you quit drinking, but you have to want it for yourself, or it will never work.

GOOD LUCK! 

Posted 5/14/2014 10:42 PM (GMT 0)
macdbmw,
We are hoping to hear from you again.
I would like to know how you are doing.
Good luck.
Posted 5/16/2014 1:25 AM (GMT 0)
Rash has cleared for the most part. Viral load from last 5/9/04 [18 days into treatment] draw back. Viral load pre-treatment was 3,613,793. This draw was almost undetectable at 13! This treatment kicks ass! I find the treatment makes me feel bad for a few hours after I take it on some days Gives me a slight HA most days. And, as discussed above cannot be out in sun.
Posted 5/17/2014 2:49 PM (GMT 0)
Hello Mac

Good luck on the treatment program. I finished Solvadi, Olysio and RIBA on 3/28/14. Waiting for the 6/28/14 blood work to confirm SVR 12. My side effects diminished quickly after completing treatment. I know about the sun roof thing. Didn't take me long to figure out I needed to drive with sunroof closed.

The treatment program worked fast for me. AST/ALT levels dropped to 14 and 11 respectively and undetected at 4 weeks. Again, best of luck.

Post Edited (Headwind) : 5/17/2014 3:22:10 PM (GMT-6)

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