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Old 05-12-2013, 05:02 AM   #1
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zoe-764 HB User
Ampyra

Just diagnosed last week. Still trying to wrap my head around all this and do what is best for me. My worst symptom is right side knee pain and weakness all up and down the right side. Lesions on brain and spinal cord. My MS specialist wants me to go on Ampyra and Tecfidera. Have any of you been on these drugs? Haven't started anything yet. Just wondering what to expect. Thanks!

 
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Old 05-12-2013, 05:20 AM   #2
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Re: Ampyra

Hi and welcome to healthboards. Sorry to hear you have gotten the dx.

Tecfiera is brand new. Only released 3 weeks ago. Youll find very few patients who have been on it, but maybe a couple here and there from the clinical trials. The drug, is one of the new oral DMDs, or Disease Modifying Drugs, which are designed to prevent new lesions and stop new attacks. Keep in mind, it has a 40% chance of doing this. Tecfidera is very new. The biggest side effect on Tecfidera so far is GI upset- however, there is no long term data on it.

Ampyra is for walking. Its a pill used to help you walk better/ further. Its highly controversial. The side effects to this are many. Depending on how badly your gait is impacting you, it may be worth it..

Neither drug will reverse damage done already from MS. Neither drug will give you any relief from pain associated with MS. Neither drug is meant to. Both drugs have risked associated with them.

You should talk to your doctor further about exactly why he wants you on these- and what the risks are. You can read about them if you seek out info from the manufacturer.

I hope this helps.
Nikki
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Old 05-12-2013, 12:23 PM   #3
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Re: Ampyra

Welcome Zoe

As Nikki has already told you, the drugs are not cures and there are side effects and controversies with both. I would encourage you to start a daily habit of stretching and staying well hydrated. This can help with muscle memory which is important towards long term recovery and to prevent atrophy. I lived in Fairfax for about a year and a half and you have many places to workout low impact exercises such as yoga, tai-chi, and pool therapy. These workouts can greatly benefit you in recovering. Unfortunately, whether meds or exercise, there is likely to always be residual damage from the lesions. You can, however, use the stretching and exercising to aid in each recovery. Your current one sided weakness may dissipate on its own. While you are waiting, this is where the stretching plays a role in maintaining your tone and muscle memory.

In deciding to use any med or not, read about the med and their warnings and side effects. Ultimately. it will be up to you to know if they are helping or not. Your doctor should also be providing with you with any necessary monitoring which can help you know when you might need to stop taking a med or to change a med.
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