I am reposting this in the medical section iy was written by Melly3183
Hi Team -
I've been meaning to post about my experience with Gilenya thus far but haven't really had the time to sit and write about it. Yes, I wrote the blog but I'll just post it here.
Gilenya was scary, sitting in observation for 6 hours while they took my blood pressure every 30 minutes was boring. But I made it through, my heart rate didn't change sufficiently at all. Okay this one time after I made a homemade muffin, but that was probably because of the sugar content. I never realized how much copaxone helped me until I stopped taking the medication, I felt symptoms I didn't realize I had. But they quickly went away after I started taking Gilenya. What I can tell you from my experience and how i've changed is:
I don't pee so much
I don't get those horrible welts
No more bruise like scars on my body from the injections
No more anxiety attacks
I also don't sweat like it's going out of style
I am more confident in myself
As with all medications and severe side effects, talk to your doctor about making the change. We are all so different in this disease that it's hard to pinpoint what exactly will work for us.
Also, I learned there was a new injectable at my walk. I don't have all the details about it, I just got a waterbottle with the name on it, it's H.P. Acthar Gel from the little that I read this morning I believe it's for m.s. attacks but I only skimmed the text and without my glasses the screens a tad blurry. Here is the link from the NMSS website:
Also, from my newsletters and momentum magazines (which you can order for free from the MS society, they send them quartlerly) I learned they are doing more research on the gene that they believe to cause M.S. They believe that we were born with this gene and that some sickness or something triggered it to activate and this is why we end up with MS. Now last year they told me it wasn't genetics, it wasn't alot of things. But this year, it may run in the family and it may have something to do with genes. Which is better than knowing that it just appears to us lucky winners.
They are also actively researching people who show some of the same symptoms, and trying to see if they can segregate us into groups that can be treated more effectively as opposed to just guessing how we should be treated. If that makes sense, having a more personal medication to help ease our symptoms. I read the article awhile ago and explained it better at the walk.
But, keep on keepin' on. This is great that we have this team on here. I never thought I'd enjoy reading about scientific stuff, or that I would have to do it for personal reasons but it gives me hope that they are trying so hard to help us. Here is the link (I believe) to sign up for the momentum magazine or at least read it online. Good luck and keep sparking:
"In the sweetness of friendship let there be laughter, for in the dew of little things the heart finds its morning and is refreshed.ï¿½ - Frances Ward Weller
"Strength does not come from winning Your struggles develop your strength. When you go through hardship and decide not to surrender,
that is strength."
"You have to believe in yourself when no one else does. That's what makes you a winner."
- Venus Williams
current weight: 254.0
"A reminder to walk comes from one heart to help another." Me