passed Gilenya screening waiting for appointment

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

passed Gilenya screening waiting for appointment

Postby CaliReader » Sun Apr 07, 2013 5:16 pm

Hi,

At our last conversation in March, my neurologist opened up the universe of MS drugs for me to choose one, including Tysabri.
That was a surprise. I had been gritting my teeth getting ready to reluctantly submit to Avonex. I took a week to think. I read trial results for Gilenya, especially the brain atrophy result and decided to add Gilenya while I can still afford health insurance. If it goes poorly I can stop.

So now I'm waiting for an appointment to spend a day in hospital with continuous ekg monitoring while I take the first dose. I am hoping for a complete non-event with nothing of interest to report.

This will be in addition to diet and supplements. I won't be adding immune modulators like hookworms since Gilenya should do enough of that. I am definitely in search of improvements to my anti-oxidant combination.

Re risk, I took a week to think and decided to go for it. I've read what I can find and the drug has been in use for three full years. It's a personal choice.
CaliReader
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Re: passed Gilenya screening waiting for appointment

Postby CaliReader » Wed May 08, 2013 6:04 pm

Starting Gilenya took longer than expected. There were many screening tests.

Side effects hit about three hours after the first dose. My heart rate dropped, but not below what they considered safe. 55 beats per minute. Fatigue hit me like a Mac truck. Little pinching muscle aches in many parts of my body. Taking this medicine is not a non-event. I will continue for now. I'm hoping for side effect improvement over the next month or so.

The observation was hourly heart rate and blood pressure and a final EKG. I did not stay over night. That would have been required had the heart rate gone much lower.
CaliReader
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Re: passed Gilenya screening waiting for appointment

Postby CaliReader » Fri May 10, 2013 7:00 pm

Hi,

I just wanted to report that the side effects have calmed down. Those muscle twinges were really uncomfortable, but they are gone now. My heart rate is back up. The stats on this drug are still really good, re reducing relapses etc. I will keep reporting to the extent that there is anything to report.
CaliReader
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Re: passed Gilenya screening waiting for appointment

Postby CaliReader » Tue Jun 18, 2013 6:16 am

Gilenya continues to be very easy to take, with no side effects since the first week.

I haven't had a complete blood count since starting, so don't know what my white blood cells are doing. I did have one bladder infection that was easily treated with 5 days of antibiotics. Taking cranberry, drinking lots of water to prevent more bladder infections. Also washing my hands a lot.

I had one relapse, but the drug is not supposed to be effective to lower the number of relapses until 3 months after starting.

Overall, I'm very happy with this. I'm thinking about adding estrogens next.
CaliReader
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Re: passed Gilenya screening waiting for appointment

Postby CaliReader » Fri Sep 13, 2013 8:52 pm

Hi,

I took my follow up Gilenya tests. WBC was lower than when I had started, but not below normal and
no lower than it had been a couple years ago, while on no medications.
No sign of macular edema. Liver enzymes fine.

So far so good. But this is strong medicine. I will stop or substitute when I decide to. It's not somethng
I would take into old age. Also, I was having frequent relapses, and symptoms that terrified me.
I am healthier, but still very aware of limitations that don't go away.
Currently investigating alternatives that also reduce relapses and lesions.
CaliReader
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Posts: 194
Joined: Fri Nov 02, 2012 3:30 pm


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