So far the vertigo that forced me off Fampyra last time seems to not be present, thank heavens.
Is it helping? Well, I FEEL different. Swam on Friday and found it harder to swim but that's cos I was going a lot faster - normally it takes me a minute per lap, and Friday I had knocked that back to 45 seconds.
Significant improvement there, but it still feels like my body isn't quite right.
MS walk tomorrow. Apparently there's a 3 km route. With luck I'll make it all around in good time.
Vision still different than it used to be. I suspect either I am over my optic neuritis or just getting older - haha!
Might be time for another visit to the eye doc.
2 comments:
what are you up to these days? I have been on Techfidera for 3 months now and considering the Famphyra. Can you have them close together? Doctor told me to keep the Techfidera around 12 hours apart but you need it with food. Not sure how to put the other drug into the routine as am still working and the whole idea of being dizzy on public transport is a bit of a concern...though driving would be a no go I think. What are your thoughts.
Hi Art - thanks for commenting. I don't think there'd be any conflict with Techfidera and Fampyra as one is a disease modifying drug (tech) and the other is a potassium uptake inhibitor or something. Fampyra just seems to speed up the conduction of nerve impulses. My vertigo is pretty minimal these days - the first time I took F I was dizzy +++, so I stopped. The second time I tried it it was fine and my walking improved considerably. I'm still on it now and I think it helps in other ways, too - my numbness is less, etc. Here's what they say on the Fampyra website:
FAMPYRA is the first treatment to address the unmet medical need of walking improvement in people living with MS demonstrating clinical efficacy in adults with MS. FAMPYRA can be used alone or in combination with disease modifying therapies, including immunomodulatory drugs.
In clinical trials, patients responding to FAMPYRA had an average increase in walking speed of 25 percent and FAMPRYA was shown to provide a clinically meaningful improvement in walking.
The highest incidence of adverse reactions identified from placebo-controlled trials in MS patients with FAMPYRA, given at the recommended dose, was urinary tract infection (in approximately 12% of patients), although infection was often not proven by culture. Adverse drug reactions identified were mainly divided between neurological disorders, such as insomnia, balance disorder, dizziness, paraesthesia, headache and gastrointestinal disorders including nausea, dyspepsia and constipation. In post-marketing experience, there have been reports of seizure. Confounding factors may have contributed to the occurrence of seizure in some patients.
So I'd chat with your doc and try it out. The only limiting factor might be cost...
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