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Re: Medications or not?

PostPosted: Mon Jul 13, 2020 2:49 am
by Ale
Hi Andrea,
Thanks for your message:)

Re: Medications or not?

PostPosted: Mon Jul 13, 2020 8:42 am
by Rose
...I know that Professor Jelinek took Copaxone as his first and only drug I believe,before he embraced his O.M.S program. He is drug free and relapse free for a very long time, around 20 years or so, maybe the good Professor will contribute to this conversation thread!
All I can say is research thoroughly before making a decision.
Take care
Rose xx

Re: Medications or not?

PostPosted: Tue Sep 15, 2020 2:01 am
by Ale
Hi Rose,

Thanks for your reply; I was hoping to be able to directly get in touch with him, but I dunno how... would you be able to help me with that please? I am from Australia,I am stranded in New Zealand, I had to start Tecfidera in May as I kept relapsing, the country was in lockdown and because of COVID this was the only option I had here... I just got an MRI done and I have a new lesion and it is active, therefore I will need to switch treatment I guess. I am JCV virus, but I was not happy to take Tysabri anyway, but it seems like I have a very active and aggressive disease. I relapsed 6 times in 9 months. I am living my first year of diagnosis with lesions actives all the time. I am so overwhelmed and I dunno what to do to have a bit of break. I have been suggested Ocrevus, but again... I will be able to fly back to Melbourne only in December. I hope for this two months to go, to hold in there and do not relapse again. I am so done:/ thanks for listening and replying
Take care

Re: Medications or not?

PostPosted: Thu Aug 19, 2021 10:21 am
by Matthew
I can't find the quote at the moment, but I believe that the Professor has said that long-term disease outcomes benefit from taking DMDs immediately after diagnosis. I was diagnosed in 2010 and now I wish I had taken DMDs, which is why I will have my first MRI since 2010 and then see what the drug choices are. This is not because OMS doesn't work but because my compliance with the programme in the past two years was not very good and hence I get the consequences.

The advice is to "do whatever it takes" and means do the programme and the drugs.

Re: Medications or not?

PostPosted: Wed Sep 01, 2021 1:41 pm
by Duarte
It seems that there is an increased benefit to take DMD on top of the OMS program. At the same time, some people do extremely well just on the OMS program - hard to say, very unique (snowflake) like MS itself