Another newbie from Germany

[BavarianStef]

Hi community.

My name is stefanie, I'm a 41 old german and i have ms since 2000.

The first years I had primarly sensizitation disorders under rebif and nearly was free of complaints. However, in august 2015 i suffered a severe thrust of vertigo. My doc tried AUBAGIO after this, but it did not work satisfyingly, so i had approx 5 thrusts in the last year. So i decided to try ZINBRYTA. My first injection was on september 20, so I'm currently longing for the 2nd injection. I had nearly no problems, except a little skin irritation. Currently i have a new thrust and i got 9g cortison, however until now with no improvement.

As i cannot find any patients with ZINBRYTA here in germany, i hope to find some in your board. Is there anybody with zinbryta experience?

Thanks,
Stef

[lyndacarol]

My name is stefanie, I'm a 41 old german and i have ms since 2000.

The first years I had primarly sensizitation disorders under rebif and nearly was free of complaints. However, in august 2015 i suffered a severe thrust of vertigo. My doc tried AUBAGIO after this, but it did not work satisfyingly, so i had approx 5 thrusts in the last year. So i decided to try ZINBRYTA. My first injection was on september 20, so I'm currently longing for the 2nd injection. I had nearly no problems, except a little skin irritation. Currently i have a new thrust and i got 9g cortison, however until now with no improvement.

As i cannot find any patients with ZINBRYTA here in germany, i hope to find some in your board. Is there anybody with zinbryta experience?

Welcome to ThisIsMS, Stef (BavarianStef).

I discontinued using the FDA-approved MS drugs years ago (because I did not feel they were effective for me), so I am not familiar with Zinbryta (in fact, I know nothing about this drug – perhaps it has a different name here in the US).

Since my current interest is in vitamin D, I hope you will permit me to ask about your situation.

MS patients frequently have low blood levels of nutrients, such as vitamin D, vitamin B12, magnesium, zinc, and others. I had the vitamin D blood test (the "25-hydroxy D") in January and the result was very low (24 ng/mL). I am curious to know if you have had this test and, if so, if you are willing to share your test result number.

Vitamin D deficiency can lead to many of the same symptoms found in MS. It is important to know your vitamin D status – if it is low, it is possible that some of your symptoms can be improved. If you have not had this test, it might be a good idea to ask your GP (general physician) for it.

[BavarianStef]

Hey linda,

I think zinbryta is the same in us as in germany, the active substance is called DACLIZUMAB. You can see more information here: https://www.zinbryta.com

Thx for your vitamin d report, you can hear very much about vitamin d in relation with ms. My neuro however is not that convinced of the current studies, he rather trusts in the new medications of the last years. For me personally i can say that my private condition has gone worse last year for different reasons. I rather believe in a balanced body and soul as long as more details with vitamin d are known. I hope you will also have success with the vitamin d topic, for me it currently is not my first choice.

Nevertheless, i hope i can find patients with experiences with my new drug here . Stef

[lyndacarol]

I think zinbryta is the same in us as in germany, the active substance is called DACLIZUMAB. You can see more information here: https://www.zinbryta.com

Thx for your vitamin d report, you can hear very much about vitamin d in relation with ms. My neuro however is not that convinced of the current studies, he rather trusts in the new medications of the last years. For me personally i can say that my private condition has gone worse last year for different reasons. I rather believe in a balanced body and soul as long as more details with vitamin d are known. I hope you will also have success with the vitamin d topic, for me it currently is not my first choice.

Nevertheless, i hope i can find patients with experiences with my new drug here . Stef

Thank you, Stef, for the information on Zinbryta. I do recognize the name daclizumab (a monoclonal antibody like Tysabri, also known as natalizumab, which was the first monoclonal antibody approved for MS, I believe). There are sub forums on Tysabri, Campath, Rituxan (other MABs) here at ThisIsMS, but not one yet on Zinbryta. Keep us informed on your experience with Zinbryta; as more people use it, it might be helpful to add another subforum.

In the information you supplied, there was the following warning that I'm sure your doctor will be watching:

ZINBRYTA may cause serious liver problems (including autoimmune-related liver problems) that may lead to death. Your healthcare provider should do blood tests to check your liver before you start using ZINBRYTA, every month while you are using ZINBRYTA, and monthly for 6 months after you stop using ZINBRYTA. Your healthcare provider should check your test results before your next dose.

Since there are medications that can deplete vitamin D (and I don't know if Zinbryta is one of these medications), you might consider asking your neuro to throw in a vitamin D test once a year when blood is being drawn anyway to check for possible liver problems. The test is inexpensive, it might supply valuable information. (I am a great believer that MORE information is always good!)

[NHE]

Here are the search results for daclizumab. There are just over 100 posts.

http://www.thisisms.com/forum/search.ph ... mit=Search

[BavarianStef]

Hi lyndacarol,

You are right, my doc is beware of the risks as liver problems and skin irritations etc. i have to visit him monthly to do both the blood test (ALT) and the injection.

Zinbryta is no medication of first choice such as rebif or any other interferon or aubagio. As i did not longer respond to rebif and aubagio, my neuro suggested to try daclizumab.

My experience with zinbryta was: i only had some skin irritations so far which just vanished after a short time. I assume that zinbryta is not yet very common as medication, however i will keep an eye on it.