Author Topic: Olysio Warning (Read 15391 times)

lporterrn · « **on:** October 24, 2014, 07:19:19 pm »

Everyone on Olysio - this warning just came out: http://www.globalpost.com/dispatch/news/kyodo-news-international/141024/3-die-after-being-administered-hepatitis-c-drug

This info is preliminary, and we will see what the FDA warns in the U.S.. Basically, your doctor should be watching your bilirubin levels - if it rises, talk to your doctor immediately about these reports. Do not let your medical care fall through the cracks. This is very disturbing. However, 19,000 people did not have this problem, so it is rare.

FYI, for those who read (bwelsh) Karyn's warnings, she said her mother was on Sovaldi, and to my recollection, not Olysio, If I am incorrect about that, please let me know.

This is all I know - if I get more info, I will update this.

Tess1971 · « **Reply #1 on:** October 24, 2014, 07:52:49 pm »

Sovriad? is that same thing as Olysio?

Bucky · « **Reply #2 on:** October 24, 2014, 08:06:42 pm »

Lucinda,

You are correct about Karyn's mother and the Sovaldi.

Bucky

Bucky · « **Reply #3 on:** October 24, 2014, 08:17:59 pm »

I wonder why Janssen is using a different name for Olysio in Japan?
Bucky

Bucky · « **Reply #4 on:** October 24, 2014, 08:26:56 pm »

Quote from: Tess1971 on October 24, 2014, 07:52:49 pm

Sovriad? is that same thing as Olysio?

It appears so as both are generically know as Simeprevir sodium. My bilirubin levels actually fell during treatment.
Bucky

Tess1971 · « **Reply #5 on:** October 24, 2014, 08:49:21 pm »

Not sure what to think anymore.......sooner or later everything has a black box warning added to it.

lporterrn · « **Reply #6 on:** October 24, 2014, 09:35:07 pm »

Yes - Olysio is Sovriad in Japan. And although I echo Tess's sentiments, forewarned is forearmed. There are 16,500 deaths every year from NSAIDs (ibuprofen, aspirin, etc) and I woudn't stop taking them if I needed them. However, if I was suddenly anemic, I would stop taking them until a GI bleed was ruled out. Just watch your labs and let's keep talking.

NoFear · « **Reply #7 on:** October 24, 2014, 10:27:57 pm »

After receiving my prescription 6 months ago, I finally picked up my Sovaldi and Olysio. I am going to start taking them tomorrow. I am 65 and have had Hep C for almost 36 years after receiving a blood transfusion in 1979 after a power saw accident. I will report this to my Dr on Monday, but after going through the insurance coverage nightmare, I fully intend to take this treatment.

badbradley · « **Reply #8 on:** October 24, 2014, 11:00:44 pm »

Down the hatch my friend! 17 more dys of meds for me.Good luck on your journey!
Bad Brad

willie g · « **Reply #9 on:** October 25, 2014, 03:15:24 am »

BWELSH,KARYNS MOTHER WAS ON '''OYLISIO'' GO TO HER PROFILE AND READ ALL OF HER POSTS,,, POST 24 IS THE ONE WHERE SHE STAES IT and by my and her calculations it was April to June, 12 weeks as recommended... so was she nuts, was she banned for trying to tell us over and over due to stress and facts that her mother WAS DYING FROM OYLISIO,, she assumed it was the solved , blinded by the fact that it may have been the OYLISIO,,,,anybody feeling differently now about her ''wacko'' comments.another member did say LUCINDA was right about her not believing she was on oylisio, if so you were wrong. so I ask myself after reading the new guidelines was it necessary for her to have A TIME OUT, we didn't hear what we wanted to hear, so we assumed she was overdoing it.lets say it was our mother and everything she stated was true and because of her mental state was impaired but for a just call because caring and watching a loved one deteriorate in front of your eyes would definitely made or make me desperate. as I followed her posts I had this gut feeling that she was who she was and even changed her name to come back as humbly as she could because WE ARE A LOVING CARING GROUP, RIGHT? I even had a smartass comment I posted about ''WACKO'' GET MY DRIFT''[see one of my recent posts.] I sat today replying to her for a half hour asking many WHYS and you know what happened after all I said to her and prayed with her, I pushed POST and it evaporated in front of my eyes. when she said she was banned another member told her NO YOUR NOT, so that is why I responded. I was not all boo hooey about it,, I asked specific factual questions, some which may have been a little harsh but I really wanted to know WHYS and I prayed with her at the end because she had thanked us in the beginning and she stated a belief in GOD,,she came back for a reason . I think because she felt she could vent[which at times was overwhelming but just think about it,, if there was ANY percentage that she really needed us how does that make you feel.too much honesty, too much caring was perhaps her downfall. yes we may think she was NOT the one with the hep c so she really wasn't credible on this forum but do we really know that her mom was even capable or wanted to get on here. yes karyn said she was very healthy and very with it but in my mind if it were my mom I would be HOPEFULLY be saying the same.. I will say one thing that is true,, her not like me REALLY loved her MOM. I wish I could say the same. THIS FORUM is just not about hepc, hep b aids etc. ITS more than that and for that reason I kept coming back. I found a part of me that really caught me off guard. I found out I am not the person I was being and for that I thank all of you especially ''darn'' LUCINDA which by no means did I say that in a negative way, I love who she is, I love her courage and she really makes the word ""love"" a very meaningful statement.THE ONLY true feeling of that word came to me one other time and that was when my only child ''LITTLE MOON'' was born, I hated bullys all my childhood and teen years and then I left at the age of 17 and swore I would never let anyone bully anyone in front of me but to fight the bullys I unfortunately became one.i know your asking where in the hell has this got to do with hepc and why is he going on and on? well hep c and this forum as well as other things made a SHIFT in my life,, a real good one. now as far as these TIME OUTS go according to the NEWBIE moderator[that's what it says] I have broken more rules than any other member,,abusive language,swearing, piggy backing on others posts, hell I could go on and on and I really laughed when it stated you can not change your name etc. so with all fairness I of all people deserve A TIME OUT and I am serious about that and MY OLD BEHAVIORS do sneak back in and dam I can not guarantee who or what ill say as you all quite no.there have been so many times I wish their was a dam erase button somewhere.. oh boy,, this really has become an Assumable world. especially with all these gimmicks like facebook and twater[sorry I think I ment twitter]people read and then they assume,, their thoughts and feelings many times are so distorted because they really think they know when all they have done has assumed..hell prisons have innocent people doing time just because of assumptions,,i even know a few,,, kindness, giving, caring is really going down the shitter and its not getting any better but as this site has proven to me its still trying to hang in there. I realize now this world is one big GIFT yet most of us cant see it anymore. whens the last time we REALLY sat down, layed down and looked up,,on a clear night what a true GIFT it is,, how many times have we had a split second of ''I should call that person, just to say hi, thinking it would make their day when in fact we don't even realize its helping us more than them,, but that second is quickly thought away because of the next THING we must do.. I, I , I, I HEAR THAT ALOT lately and hell I'm as guilty as the next BUT I[lol] am working on that. what do I want in life more than anything and I desperately need to do? just ''listen and I really mean LISTEN and the other is to GIVE and KEEP giving because most of my life I have been TAKING,, absorbed with STUFF and MORE STUFF, EGO and more EGEO so with that said I thank you for all of your GIFTS and I cannot honestly say I will follow these friggin new guidelines so the padlock is now closed and I of all people DESERVE to be on TIME OUT ,, may GOD, BUDDA,YOGA, STROMBOLA,, BENDAOVER,,[WHATEVER YOU BELIVE IN be with you as well as "I" lol my friends lol, lots of laughs and lots of love,, ''just'' willie g [once again my real name is DONALD TRUMP he he]

Pelham123 · « **Reply #10 on:** October 25, 2014, 08:22:46 am »

My bilirubin levels increased while on Sovaldi, but never exceeded the range for normal. However, my gastroenterologist never tested for elevated creatine, which the Sovaldi label said might also increase. The office was following a 2013 protocol for blood tests. Sovaldi wasn't released in the U.S. Until 2014. Some doctors aren't up to date on the side effects.

rainbowray · « **Reply #11 on:** October 25, 2014, 09:28:41 am »

Yes,
bweish's Mom was on sol/oly combo. This is all a new thing in the medical world, but what is not new is the way the trials get overplayed sometimes and we who want the results believe "everything". When Interferon came out, it boasted around an 80% success rate. Time proved someone exageratted, but to the Hepc
sufferer it was wanted to be believed. The facts are always best, telling the truth always wins. Just do your homework as you should, your responsible for what you put in your body in the final end.
And to end in a quote--"Love never fails"---1 Corinthians 13:8

Bucky · « **Reply #12 on:** October 25, 2014, 10:03:42 am »

Willie and Rainbowray are correct. On 6/28 Bwelsh posted: "This year, April 2014, she started the Solvadi and Olysio... 2 pills each day for 12 weeks."
The fact that she continually blamed Sovaldi as the culprit, I did not even think about the possibility that Olysio could have had a part in her medical decline. She did not blame Olysio even once in her posts.
At the time I posted to her that she had not been banned she hadn't. It happened the next day.

To put this warning into prospective, I personally know two people who died from complications of I&R treatment and that is why I would not use it.

This report is really going to up the demand for Harvoni.

Bucky

2Blave · « **Reply #13 on:** October 25, 2014, 10:19:38 am »

Thanks for the warning re bilirubin. Is there a difference between bilirubin and Total Bilirubin? I know Tbili is one of the things they look at for MELD score for liver transplant. What are the dangers of elevated bilirubin? Are there any symptoms we should be looking for re bilirubin?

lporterrn · « **Reply #14 on:** October 26, 2014, 10:36:10 pm »

Willie,
Thank you for expressing your concerns. I want a forum that people can feel that they are heard and they can say what they want and can get quality feedback. I hope you will understand if I don't specifically address the issues you brought up. It is a complicated issue, and we guard this forum carefully. Rather than go in to it, I am going to ask you to trust the Hep team to handle this.

BattleTheBeast · « **Reply #15 on:** October 27, 2014, 08:42:15 am »

Lucinda,
I would like to thank you personally for all you and the team are doing here. I know for me it's been a godsend and I trust your judgement that you are doing what's best for the greater good.

As a very new forum member and newly diagnosed woman; I didn't know either of these people but did get messages from the daughter which were a bit uncomfortable for me. I felt horrible about her loss but her messages to me also made me feel like I had to justify my own educated choices. I think all of us need to know the potential risks and rewards with anything we put into our bodies but I know I came here looking for support and a place to share my chosen journey.

To all my fellow forum folks,

Thank you so much for being those extra eyes and ears watching the news for any potential issues with these new medications we are trying. I trust my doctor however my head is not in the sand and any information regarding new risks I want to immediately discuss with him. Thank you for sharing your journey, thank you for listening to me, thank you for your support and encouragement.

~Mel~

willie g · « **Reply #16 on:** October 27, 2014, 10:20:21 am »

of course LUCINDA, I trust you and your team for whatever choices you have made or make. I have done considerable thinking and now realize in many cases I personally need to go to the 'off topic forum . by me just popping in and out I now realize as I have stated i need to ''Listen'' more and make mine or anybody Else's journey continue to be a loving knowledgeable one and yes I am putting a sticker on my laptop as soon as I am done here in regards to the SEND button '''ARE YOU SURE WILLIE'',, this whole new journey has taken me from one valley to the next which I knew nothing about just a short time ago. more LSTENING LUCINDA, more listening and much more love and giving. thankyou for your humble response ''just'' Willie g

lporterrn · « **Reply #17 on:** October 27, 2014, 10:46:04 am »

I just love you Willie. You have a knack for saying what I need to hear. I need one of those stickers too.

rainbowray · « **Reply #18 on:** October 27, 2014, 11:14:02 am »

Start a new forum Lucinda,
Call it "just" Willie --lol

sunrise · « **Reply #19 on:** October 30, 2014, 05:22:06 am »

Hi
Good info Lucinda. Still though low percentage for 19, 000. Also what stage were they in? As for bwelch, I became alarmed about the allegations, but we have to remember her Mom was 80. I thought to myself, heck anything can happen at 80. Our bodies can only take so much. As my son tells me, you never know the whole story. Im thankful for these new meds, and the risks don't outweigh the benefit, beating this horrible disease! My doc is watching blood levels and just waiting for vl to get in for 4 week check. Thanks Lucinda...sunrise

Hep Forum Moderators · « **Reply #20 on:** October 30, 2014, 09:27:46 am »

As bwelsh said her mother took simeprivir (Olysio), we have
passed along the warning mentioned in this thread to her although we
can't assume any knowledge about the cause of her mother's death.

For those unfamiliar with the background on bwelsh, her concerns and
her mother's death (http://forums.hepmag.com/index.php?topic=1620.0)
were taken seriously by Hep and Forum users. Her time-out status came
as a result of her not following Forum guidelines despite requests to
stop flooding the Forums with a single message. This new information
does not change our original concerns. It is not OK to use the Forums
to advance a single agenda.

Thank you to those who gave us feedback about how we handled this
situation. Please continue to speak up so we can improve this platform
and offer the highest quality support possible. Also, thank you for
all you have done to make this a safe and informative group. Together
we are making a difference!

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Author Topic: Olysio Warning (Read 15391 times)