Anyone getting Mathers for your MG?
 

Title wrong.. Not Mathers!! "Mabthera"

I was scanned this Monday to look for leftovers from my thymys surgery removal I had about 12 years ago...
Nothing left.. So now my doctor want to try a different drug for me..

I have been on mestinon and prednisone for 10years noe and its not that good apparently to eat cortisone for that long..

So no he wants me to start with "mabthera"

Experiences??

Teljemo,
I don't have much of an answer for you, since I have never heard of this. To my knowledge, no one on this site has mentioned this treatment. I also take Mestinon and Prednisone 10 mg. I have been on this for a year. I started Prednisone at 60 mg an am now down to 10mg. Neuro plans to go to 0 before long. Did the Doc plan to leave you on it that long, or was that due to illness. I just know much about it. I have MG.
FREDH

The title is wrong.. It's not Mathers.. It's mabthera
It has something called Rituximab in it that kills cells..
Maybe this stuff has other names in Sweden where I'm from..
It's user to treat MS among others to..

I have been off cortisone or at lower levels.. I am at 10mg now and have been for almost the whole period..
I always go back to it when getting double vision..

So my doctor has tried to lower it.. However.. I still get double vision when on 10 MG cortisone every other day and mestinon 60mg ever 3rd hour I'm awake..

So I hope this new drug can help me with the eyes..
Heard about horrible side effects..

Yes in short it's called. RITUXAN, I've had 2 infusions with no success or improvements, for as far as side effects I wouldn't worry to much people who do have to worry is ones with CANCER I was told by my Doctor, your body seems to react to it, in our case we do not have any type of tumours our cancerous tissue...well anyways I hope we don't, it's the last thing we need.

RITUXAN seems to have better results in patients that have the MUSK type of Myasthenia I have ACHR...not sure why that is.

You have all to gain to try it out like I did and see what happens...are you taking any type of immune suppressant, I'm taking Imuran and Mestinon and was able to get of Prednisone after a while....my double vision has never come back afterwards.

Keep us updated on your outcome,
Good luck!

What's the difference between MUSK and ACHR? Never heard of different types of MG..

I have ACHR mg and I did Rituxan last year. I had my final of 4 treatments in April 2015 and they have been testing my blood quarterly since to see if I need additional treatments. My understanding of what Rituxan does (after talking to my neuro) is that is destroys the B cells which create the T cells that attack our muscle receptors. The Rituxan worked great for me. I have not to have any additional Rituxan treatments in the last 18 months and the level of the B cells in my blood has been very low or non-existent. My neuro says he had another patient who went 3 years between Rituxan treatments and he is very pleased with my results. I didn't have any side affects at all except that my hair (which was very thin after cyclophosphamide treatments the year before) started growing like crazy and got thicker that it has ever been in my life.

As far as other treatments for mg, I am on Imuran (200 mg) daily, mestinon timespan 180 at bedtime, and regular mestinon as needed during the day. On a bad day, I have to take 2-60 mg tablets. I am also taking 10 mg of prednisone every other day.

I still have double vision and general overall weakness. It definitely didn't cure the mg, but it certainly got me out of a bad spell and has kept it at bay for 18 months. If you have any other questions, just post them here and I'll try to answer.

Good luck!

A little update :)
 

I had my first treatment with mabthera a week ago..
It took about 6 hours.. a 600mg bag dripping in to my system.. ;)

About halfway i gout a little sour throat.. but that went away after about a hour... that is normal...

I am having another treatment in a week.. only 2 weeks between the fhirst treatments.. then 6 month in between..

I cant feel anything yet.. but they said it could take a couple of weeks to kick in..
also a have to slowly stop with my cortisone (prednisone)

I really hope this will help me with my dubble vision..

(can a mod plz edit this thread title.. from mathers to mabthera)

Glad you did well. I'm doing Rituxan on Tuesday.