I know there are some doctors who are prescribing Gilenya at a lower dosage. Who? Anyone? Supposedly Gilenya can be just as effective at a lower dose. Has anyone else heard this? I have been taking Gilenya at a lower dose for almost three weeks and do feel better. My Neuro is in Chicago. I would LOVE to hear what others are experiencing. Thanks! Really!
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I haven't seen any kind of actual safety or efficacy trials on the half dose that some doctors are prescribing. Pretty much the only times that I've heard of this are when someone is having an issue on the Gilenya and instead of switching meds the neuros are just telling patients to take every other day.
I'm glad that it's working for you. Please keep us posted. -
"Can be" are the operative words. The 0.25 mg dose hasn't been clinically tested. Based on a review of the data for the 0.5 mg and 1.25 mg that were clinically tested, the FDA reviewers "went backwards" in their analysis and calculated what various outcomes would be for 0.25 mg. The calculations indicated that 0.25 mg could be an effective dose with lower risk. Based on that analysis, the FDA recommended that the manufacturer develop a 0.25 mg dose for patients who can't be treated with 0.5.mg and conduct a clinical study to establish it's efficacy in actual patients. The data analysis is promising and a reasonably reliable guideline for doctors who want to adjust the dose of Gilenya. But until that clinical study is completed, 0.25 mg is "just as effective" only on paper.Originally posted by emaloneywiese View PostComment
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How do you receive the reduced dose, maloney? Is it taking the drug every other day or there's actually a reduced dose?Comment
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I take Gilenya every other day. I started Gilenya Feb 2011 and felt pretty bad then my vision was effected and I was ready to stop. My Neuro suggested the every other day idea and said I was "the prototype". I'll admit I was surprised by his answer. I've been taking Gylenya at a reduced dosage for four weeks now. It takes about 2 weeks to even out. I am in a clinical study with this dosage and I do feel better at this amount. I feel as if it is working but I do wonder if I am 50% more susceptible to disease progression. I told myself I'd give this 6 months so I've got until the end of August.Comment
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Please let us know how things go. And if it's not too pushy, would you mind sharing your MRI results with us when you get them? I'm just very interested to see some anecdotal stuff on the half dosing.
I hope all goes well for you.Comment
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50% Gilenya dosage
I have been taking Gilenya every other day since June 20. My most recent MRI came back fine (3x the strength as the regular MRI) and no new activity. I feel better - not losing weight, nauseous or spinning dizzy. I have had a few really good days and of course thought "this is it! I am going to feel better" but that was short lived - not as miraculous as I was hoping for. My Nuero said they are still playing around with the Gilenya dose - which makes sense because one size does not fit all. I'm 5'10" so I'm not shopping in the petite department which is even more convincing for the lighter Gilenya dosage. If you are having serious side effects this is something worth trying.Comment
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