Category Archives: Gilenya

Gilenya = Fail

Ok, here’s the scoop:

I’m still waiting on my IgeneX lyme test results.

I am off Gilenya for good because I was having bad, scary heart palpitations and am currently relapsing with loss of vision in both eyes, cog fog and weakness in my left leg.

I have an MRI tomorrow afternoon, after which I am starting a three day course of IVSM again.

Then I have a washout period of no medication and will be likely starting Tysabri.

Thus far, I have had Copaxone, Avonex, Gilenya, 2 CCSVI procedures, LDN, and 8 IV solumedrol infusions.

I am so ready for something to give, finally for the positive.

Back on Gilenya… again

I’m so incredibly tired and sleepy tonight. I started back on my Gilenya today and am wondering if it’s making me more sleepy.

I have been off of it for the past 10 days. I had developed a bad cough, and they weren’t sure if it was a side-effect of the Gilenya or a remnant cough from my illness. The cough finally went away over this past week, and now I am back on the med.

Hopefully, the cough stays away, else I will have to go off Gilenya permanently.
Back at Christmas time I was off of it for 4 days because I was sick and then went back on until this latest break.

Happy 2012!

Not going tailgating today nor going to the Steelers/Browns game. My husband thinks I am still not well enough. He said it’s gonna be cold, windy, and raining, and he doesn’t want me to get worse.

So, now I get to watch it at home under my comfy down blanket, sipping hot apple cinnamon tea, eating Hawaiian pizza. Not a bad trade off.

I’m still getting over my yearly chest cold – I took my last dose of antibiotics this morning. Here’s to hoping this yuckiness clears up. I took a 4 day vacation from my Gilenya (MS pill) because I needed to fight off this infection, but now I have really blurry vision and a noticeable limp again on my left leg. Thus, back on the Gilenya I go.

And in true typical OCD “A”-personality fashion, I decided to overdo it today. I un-decorated – took the Christmas decorations down, broke down the tree, packed everything away under my crawlspace, and even vacuumed. Now I am paying for it which is probably the reason for the vision and walking issue now.

I don’t like being limited in what I can do, but I just have to learn to slow down or stop sometimes.

Thus, we begin a new year… 2012!  Lets pray for good health!