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A MyMSTeam Member asked a question 💭
Northbrook, IL

first rebif, then aubagio, now tysabri...im thinking if/when the tysabri stops working ill try NO meds.
any thoughts or words of wisdom?

June 5, 2018
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Reactions
A MyMSTeam Member

jimmyb, thanx for the encouragment to keep up the fight. i know staying on meds is what i have to do. im just soooooo sick of all the meds! starting tysabri infusions in a week and pissed off that im back on a needle! again, thanks so much for the push in the proper direction

June 6, 2018
A MyMSTeam Member

I got frustrated and stopped all meds to help with MS. For me it was a big mistake but I definitely feel ya. No one ever tells us though. We're both medical mysteries and science projects. Try to explain MS and once you couldn't really ask yourself has any doctor ever explained your MS. I'm not dumping on doctors (love the alliteration though) but, right now, there are no answers which is what makes us medical mysteries. We are also science experiments. Our doctors take their best guess on which DMD will work for you but they hedge their bet and ask you to get an MRI every 6 months to see if the first try is working for you. Again, this is not shade thrown at doctors, they are doing the exact right thing. Have you try a DMD then test to see if it's working. If not, switch DMD. That makes sense. So I wouldn't stop all DMDs, though I did, because the experiment continues until the DMD that works for you is found. I've taken 4 different DMDs and quit all DMDs after #3 and that was a mistake because the experiment wasn't over. Why I urge you to not quit DMDs because they haven't worked is because, no matter how frustrated you rightfully are, your not done yet. I understand your frustration but if anyone ever says they know the answer to MS, don't buy what they are selling or at least go into it very skeptical because you will never know what works for you. That sucks but I bet you never thought, "MS, yeah I'll try that". I'm glad I moved to try 4 because that was the try that I could feel working. Good luck and I support whatever you decide!!

June 6, 2018
A MyMSTeam Member

Tysabri works for me. My only issue is I'm a hard stick and dead tired for a couple of days after the 'infusion.' It seems to be 2 days instead of the 4 it used to be ... and I have more energy the rest of the month then I used to. I would defiantly try it for 6 months. Plus there are other newer medications always coming out.

June 6, 2018
A MyMSTeam Member

I haven't been on any meds since I came off Aubagio Aug 2016

June 7, 2018

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