Saw this on CNN

[Midgey_Midge06]

Multiple sclerosis drug pulled from market after reports of brain inflammation - CNNapple.news/AnKJvcpl7Qti3Uc0...

[Midgey_Midge06]

I dunno y that didnt work

[bxrmom in reply to Midgey_Midge06]

This should work: apple.news/AnKJvcpl7Qti3Uc0...

[Midgey_Midge06 in reply to bxrmom]

Thank u!

[ssdw1958]

Oh great you have no idea what the name was?

[Midgey_Midge06 in reply to ssdw1958]

It was a drug i have never heard of but looks like they were still in clinical trial phase

[ssdw1958 in reply to Midgey_Midge06]

Well that is good to know and it’s not a drug Being used.

[Midgey_Midge06 in reply to ssdw1958]

Totally

[callyo60 in reply to ssdw1958]

it is the drug ive been on

[callyo60 in reply to ssdw1958]

zynbrita

[jimeka]

The article states that 8000 people across the European, Canada, USA and Australia are using it. I can't spell but it was something like Zynbiata, anyway it tells you in the article. Thanks Midgey, good info.

[jimeka in reply to jimeka]

Zynbryta!

[Frances_B]

For everyone - if you want facts on MS related issues and drugs then it's generally a good idea to check sites which actually know about MS - many run-of-the-mill news outlets often misinterpret, misconstrue, or misquote the "news" - or will sensationalise any good news as the next "miracle cure". It also pays to read articles carefully - while the CNN article does refer to the cessation of clinical studies, it does not state that the drug was not in use with patients. Most drugs which are new on the market will have ongoing after-market clinical studies happening to try and build knowledge about the drug.

I'm actually surprised that the MSAA, which runs this forum, does not yet have an update on this drug's withdrawal on its news page.

A couple of other sites which are worth following for news and information are:

Barts Blog - This site will always provide the latest news, and an accurate interpretation of it (usually quite technical as the people who do the blog are some of the world's leading MS experts and researchers). They will most likely have further posts to come about daclizumab (Zynbrita) and its withdrawal from the market.

multiple-sclerosis-research...

The MS Trust UK has also posted about the drug's withdrawal.

mstrust.org.uk/news/news-ab...

[Jesmcd2 CommunityAmbassador in reply to Frances_B]

Thank you for all your information Frances_B Its great that we can count on ALL our community members to keep us all updated. 😊

I'm sure that MSAA will update as soon as they are able. ☺

As with ANY DMT it is between you and your own health care team.

J🌠

[Midgey_Midge06 in reply to Jesmcd2]

Sorry i wont share any news stories any more

[Jesmcd2 CommunityAmbassador in reply to Midgey_Midge06]

Your fine Midgey_Midge06 😊

J🌠

[Midgey_Midge06 in reply to Jesmcd2]

😁

[agate]

Zinbryta (generic name: daclizumab)--it's been in use since the summer of 2016

Frances_B , the CNN article states: "The drug is available in the European Union, the United States, Switzerland, Canada and Australia. According to the European Medicines Agency, over 8,000 patients around the world have received Zinbryta. The majority of the European patients are in Germany."

[Morllyn]

CNN)In a rare move, the companies that make the multiple sclerosis drug daclizumab (brand name Zinbryta) have voluntarily pulled the medication from the market and stopped all clinical studies after reports of eight cases of serious brain inflammation among patients in Europe.

Manufacturers Biogen and AbbVie acted on the same day the European Medicines Agency called for an "urgent review" of the multiple sclerosis medicine.

Seven patients in Germany and one in Spain presented with encephalitis and or meningoencephalitis, which are both inflammation of the brain.

FDA approves first treatment for severe type of multiple sclerosis

FDA approves first treatment for severe type of multiple sclerosis

"Given the nature and complexity of adverse events being reported, characterizing the evolving benefit/risk profile of Zinbryta will not be possible going forward given the limited number of patients being treated," the companies said in a statement.

"Therefore, Biogen and AbbVie believe it is in the best interest of patients to voluntarily withdraw worldwide marketing authorizations for Zinbryta."

[callyo60]

well that is what I'm on ,my doctor has not told me yet,but i didn't receive my shot in the mail this week and i was suppose to take it on the 1st,the drug is zynbrita

[Midgey_Midge06 in reply to callyo60]

Are u in a trial?

[callyo60 in reply to Midgey_Midge06]

no i have been on it since October it just closly monitor a nurse comes to my house and draws my blood once a month,to check for liver failure

[Midgey_Midge06 in reply to callyo60]

I am glad i posted this so u wud see it. I had not heard of it

[callyo60 in reply to Midgey_Midge06]

glad you did to I'm upset with my dr, for not telling me yet ive have been having vision problems hope I'll be ok,god bless you

[Midgey_Midge06 in reply to callyo60]

Oh no! Have u called ur doc yet?

[callyo60 in reply to Midgey_Midge06]

called her Thursday havnt got back with me.im calling herbagain Monday,i been feeling crappy tho upper right side pain and neausea,no brain prablems tho,so i hope I'm ok

[Midgey_Midge06 in reply to callyo60]

I am saying prayers for u. I wud be so upset. Hang in there and keep me posted 🙏🏻🙏🏻💜💜💜💜🙏🏻🙏🏻

[Frances_B]

I apologise if some forum members have taken offence at my comment about reading things carefully - but it had me seriously worried that:

-- both the generic and the brand name of the drug were mentioned in the very first sentence of the article but someone asked what it was

-- the article clearly states that the drug was in use with around 8,000 real patients in various countries but another post said that it was still only in clinical trials

-- the article reported that Doctors will be asked to immediately contact existing patients who are on the drug - but it needs to be noted that the withdrawal announcement was only two days ago so nobody's Dr will have had time yet to contact their patients

-- the article advised patients to contact their doctor but to not stop taking the drug until they had made contact with their Dr - this is frequently what is advised in these situations as suddenly stopping a drug can sometimes have serious repercussions for patients. And as the withdrawn drug is only administered monthly, most patients will have enough time to make contact with their Dr.

The problem is that if people misinterpret and/or misquote things then panic and upset can result - and this is apparent from the concerns expressed in some of the other posts above. The links that I posted to two other reliable sources of information provided a copy of the actual information release from the European Medicines Agency (on Barts Blog), and access to more detailed information on the drug itself (MS Trust UK).

I don't post here often - it's generally only if I feel that I can in some way help others who are also dealing with this shitty disease. I have my own daily battles with the MS monster and the disabilities it's inflicted on me, and have had other people help me learn to navigate the frequently confusing and always vast amounts of information that the internet has on it. I see it as a good thing if I can pay it forward by helping other people learn the same navigation skills. However, I also need to remind myself occasionally that it is not my job to protect other people from themselves, or what they do with what is online.

[Fancy1959]

Midgey_Midge06 and every family member who reported on the news concerning the drug Zynbrytal being pulled from the market due to serious health issues.

The first thing I would request is that everyone involved to please take a deep breath. I waited a day on purpose to let everyone's emotions and reactions to settle down. Everyone in the chat room needs to remember a primary fact that we are not doctors and if we report information in good faith, we have simply given warning and raised a red flag on the situation. It is everyone's responsibility to then contact their doctor to confirm the information. Each of us will hopefully follow the directions and dictates the doctor provides. By doing so we understand and know we have put our health in the hands of a professional.

We always encourage opinions that vary from the one written in the post. That's how we learn from each other. But, as always, the foundation this chat room is built on is one of respect and treating each other with courtesy.

I personally want to thank each and every family member who's posted on this topic. Even though we would hope all the information passed along with the correct from the start, the most important thing was that the red flag went up and people were advised of the serious health issues at hand. And it was in everyone's best interest to have the information corrected and I thank everyone for doing that. Please remember, when our opinions differ, we need to present them in a non-condescending way. Again I would personally like to thank everyone involved in making sure our family members were protected and news of the serious health issues presented by the drug Zynbrytal were addressed. Fancy1959.

[MSAA_Staff]

Thank you for sharing this Midgey_Midge06 ! MSAA posted their article about the Zinbryta withdrawal earlier today at:

mymsaa.org/news/zinbryta-wi...

Thank you,

Emily