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Old 12-29-2014, 03:20 AM #1
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Default I failed...so they said.

I did indeed I did, failed the Gilenya trial. I went through all the requirements passed them like a Porche passing a VW. When I went for the first dose monitoring...my heart rate decided it could drop to 48. It took it almost a day to come up to 50...so those nice Gilenya folks said FAILED!! Momma don't usually fail, !!

I'm now taking rebif because the Tri med causes flushing and I have that already as a MS symptom. I don't mind the three day shots, maybe because I can't seem to get back in the habit of taking shots. I set alarms on my phone to remind me as of tonight.

Any whohaa, who else is taking Rebif in shots? HmMM?
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Old 12-29-2014, 02:21 PM #2
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I'm taking Betaseron, which is also three days a week. I take it Mon, Wed, and Fri. Is that your same schedule?

ETA- Sorry to hear you failed the Gilenya trial
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Old 12-29-2014, 08:08 PM #3
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Belle, I take it three days a week, and they recommend the MWFri. I think I might change it a little cause I really am not overjoyed taking one on Mon. lol

I just took this week's so for this week, yeah. I haven't taken any specific MS medication in years. My neuro stated in a very commanding way, that I needed to be on something and she was not putting me back on Copaxone. She is a really good neuro from Italy and for our local community she is an answer to prayer. We have had quite a few that fall way below having Neurologist behind their name.
She is really great with family when they do not get what it's all about...as in Your mother does have MS...I can not tell you why Dr.s Dumber and Dumbest could not see what is on the MRI nor the medical history.
You go doc!! lol
Hope you have a safe and happy New Year.LoveNHugs Momma
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Old 12-29-2014, 08:09 PM #4
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Rebif on Mon, Wed and Fri for me. My partner gives me a shot in the morning and then he's off to work. I keep Sat for my one day a week where I don't have much to do.
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Old 01-01-2015, 06:33 PM #5
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Sorry to hear your body decided to be sassy I was taken off of Copaxone as well-it was doing bad things to my injection sites. I'm not on anything right now but that may change.

Do you think that the new DMD will help you? Are you having side effects from it?
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Old 01-04-2015, 06:38 AM #6
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I took copaxone for several years and still had two to three relapses, often in the hospital. I do not have any side effects so far from the Rebif other than inj sites...I hope it works and I seem to tolerate it rather well.
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Old 01-04-2015, 02:38 PM #7
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I've been on the interferon's, copaxone, tecfidera, I'm done. I can't take the shots due to allergic reactions to the meds. Same with the oral meds. I'm JC+ so i can't take tysabri and too scared to try gilenya. I'm DMD free and I only symptom management and feel better for it. I do wish you luck on rebif. If anything, I'm no longer afraid of needles
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Dx RRMS April 1992
Yearly flares from 92 to 11
MS induced seizures 2002
Flare Oct 2011
Flare Dec 2011
Left disabled after 2 previous flares
Betaseron '02, Copaxone '12, Tecfidera '13
(allergic reaction to all)
No longer taking any MS therapy meds
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Old 01-04-2015, 08:44 PM #8
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I would have stayed on C...but I now have craters in my tummy and arms, and a hard lump in my thigh from it. Neuro decided to take me off for now. We will see what he says next visit...
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