Life with MS & EDS

August 5, 2011

Gilenya – Week One

Filed under: Uncategorized — by mseds @ 8:35 pm
Tags: , ,

I’ve been on Gilenya for a week now and must say that I love it. I feel more “normal” than I have in years. My mood has improved, too. It’s fantastic to not be doing injections. Pop a pill each morning and go about my life. No need to prep. No side effects after. It’s just great! My blood pressure is low, but I don’t notice it. If a doctor hadn’t taken it for something else and saw it was 100/60, I’d have no idea. It’s not far off from my normal 100/70, so I’m pretty confident that things are going fine. I did have a headache mid-week that lasted a day, but responded to Motrin. I get occasional headaches that come and go, so I don’t think I’m able to blame that on the new medication. So far Gilenya gets 2 thumbs up!


  1. Good news indeed.

    I think if I remember correctly that you were told that this new med may cause a drop in blood pressure. But my brain is a little mushy and I may have remembered wrong!

    Its odd that many with EDS also have POTS (Postural Tachiachardia *sp Syndrome a form of dysautonomia) which in itself causes problems with blood pressure.

    My father who is in hospital today undergoing a minor procedure was told he must drink more as his blood pressure was so low that dehydration had set in and that increasing his fluids would help it rise. He had a headache and the nurse said that was because of the dehydration and low blood pressure.

    So it seems today everywhere I am low blood pressure is also.

    I genuinely hope that next week is as good as this one as to feel ‘normal’ is just such good news. I am pleased for you.

    Comment by Achelois — August 5, 2011 @ 10:02 pm

  2. Hope your dad is doing okay! Gilenya can mess up blood pressure, either causing it to drop or soar. Since I’m prone to low blood pressure, the doctor who was monitoring my first dose said that it’s key I stay hydrated. It helps the blood keep flowing. I’m really trying hard to drink a lot. For years the only thing I’ve had to drink before lunch was decaf coffee, usually a decent amount of it. The doctor said that was dehydrating, which was sad to hear. I’m still having a large mug of decaf, but started making herbal iced tea to drink, too. I guess the milk in my cereal counts, too, right? There’s a good chance that my headache was from dehydration. I definitely need to be more careful about drinking enough. My younger daughter, the one with EDS, came home from camp complaining of a headache the other day. I bet it was because she wasn’t drinking enough on a hot day. We hear so much about high blood pressure. It seems that very little attention is paid to our end of the spectrum.

    Comment by mseds — August 6, 2011 @ 7:42 am

  3. Glad to hear you sounding so happy, rested and optimistic. It’s nice finding a good doctor I agree!! Keep us updated.

    Comment by karen — August 20, 2011 @ 9:48 pm

  4. I just stopped by to see how you are doing? Then realised as I have bloggers block and haven’t written anything in a long time it was a bit more than cheeky of me.

    However, I am still thinking of you and wondering how you are doing.

    Comment by Achelois — October 4, 2011 @ 7:12 pm

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