My experiences, now on Gilenya

Gilenya, or Fingolimod, is the first approved oral disease modifying drug for MS.

My experiences, now on Gilenya

Postby CureOrBust » Wed Nov 02, 2011 4:51 am

First a little context / history.

I have had 3 CCSVI procedures, with little to no relief. I have tried ABX's, I was initially on REBIF, which failed for me. I have had MS Symptoms for around 15 years, with a diagnosis of MS for the past 8 years. I have two neurologists, with one saying SPMS, and the other saying RR. My EDSS is about 4.0 or higher. I can walk just over 1km. My balance is bad, I suffer from Ataxia and balance the most, with tingling in my feet.

Yesterday I had my first dose of Gilenya, in the morning, followed by 6 hours observation. They said my heart rate was pretty much unaffected, and if anything, there was a slight drop at hour 3, but it was back at hour 4.

So today is the end of my second day, and I cannot say I have noticed any changes or side effects.
Gilenya, 80mg Lipitor, Inosine, Minocycline, Suppliments galore.
3 CCSVI treatments, no major noteable benefits thus far.
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Re: My experiences, now on Gilenya

Postby seeva » Wed Apr 04, 2012 11:05 pm

HI friend my name is seeva from SYDNEY my neurolist telling me that because i have SPMS he dosen't want to give me Gllenya. Only for PWRRMS the PBS comity recommened. i do not think i have SPMS i have my m.s since 1998. Afiend of mine m.s lady had m.s 25 years she is on Gilenya and found good improvements I am only using LDN drug for my m.s Please let meknow your DR details so that i can see him soon and get the script for Gilenya I tried both AMPYRA for a months each. no improvement but my walking was effected please help me my DR from westmead m.s clinic
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seeva
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Re: My experiences, now on Gilenya

Postby CureOrBust » Thu Apr 05, 2012 8:25 am

Seeva,

The Dr that prescribed me my script for Gilenya also has said that i am SPMS, and i think is the exact same Dr that will not prescribe it for you; so you already have his details.

I have another neuro (in Newtown) who was adamant that I am RRMS, so I am sure I could also get a script from him as well. Which makes me think you could maybe get yourself a second opinion. But the reason that the first Dr hasn't prescribed it for you, is because he does not think it will be effective.

I don't think it has been effective for me.
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Re: My experiences, now on Gilenya

Postby seeva » Fri Apr 06, 2012 3:35 am

CureOrBust wrote:Seeva,

The Dr that prescribed me my script for Gilenya also has said that i am SPMS, and i think is the exact same Dr that will not prescribe it for you; so you already have his details.

I have another neuro (in Newtown) who was adamant that I am RRMS, so I am sure I could also get a script from him as well. Which makes me think you could maybe get yourself a second opinion. But the reason that the first Dr hasn't prescribed it for you, is because he does not think it will be effective.

I don't think it has been effective for me.

Thanks for you reply My DR. IS STEVE VUCIC from westmead m.c clinic After the holiday i try and see DR.Michael Barnett at M.S Clinic in camperdown where prefesor john Pollard working. I think you may be know him. few my m.s friends have same problem from DR. steve and want to go to different dr, a lady m.s friend taking Gilenya told me her walking , balance must improved no need any aid for walking now, she had m.s for last 25years so friend don't giveup. the hope on Gilenya, thanks for your info.
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seeva :roll:
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