Gilenya not working (for me)

[Moosette]

batman, I am glad to hear that gilenya is working out well for you and that you are satisfied with the results you are getting. I in no way, shape, or form think any drug is going to make me feel 100% better. I am however not satisfied with what gilenya is doing for me personally when there are other treatments out there that hold fewer risks and may be a better path to take. I just wanted to share my experiences being on gilenya with others so that they could have some insight since it is still such a new drug. I wish gilenya and I were a better fit, I really do. I am totally not trying to discourage anyone from trying it. As I said before, I wish everyone on it nothing but the best

[Moosette]

kelly, I go to the "MS center for innovations in care" at MO baptist hospital, both doctors are fantastic, google it and you can get info about the doctors/center as well as their contact info on their website. From what I understand they are the some of the top MS neuros in the St. Louis area, I highly recommend both of them.

[kelly2145]

thanks Moosette!

Since being on these boards, I have learned of those two docs. Love all the recommendations - love their website -- would love to give them a try. BUT, they are "OUT OF NETWORK" with my ins and I really can't afford to pay MORE in co-pays / co-insurance, etc. At least right this minute, with current condition, I cannot make it happen. I have found another Mercy neuro I'm going to give a try. But thanks so much!!!! (they are in the back of my mind for sure....)
Have a great day,
Kelly

[Moosette]

Kelly, gotta love the whole "in network/out of network" deal with insurance, right? However, another clinic that is really good is the Multiple Sclerosis Clinic at St. Louis University. A friend of mine sees Dr.Florian Thomas and has nothing but good things to say about the whole clinic. Just another option to keep in mind Good luck!

[kelly2145]

thanks Moosette

Again, "out of network".....but thanks! Love having some "options" in mind!
Have a great evening....
Kelly

[Sara Angela]

@Batman,

What do you mean your lymphocites are down? Is that part of the WBC? I was hoping to switch to BG-12, but I'm already having low WBC.

Just wondering?

Sara

[batman12]

Hi Sara,

Gilenya is thought to work by reducing the immune system's attack on the central nervous system by retaining certain white blood cells (lymphocytes) in the lymph nodes.

It does this via some mechanism that I don't understand but the end result is that when you get a blood test you will see that your lymphocyte count is lower than before you started the drug.

That means it is working

Gilenya is also thought maybe have some neuroprotective effects - this is why it is being trialled for ppms.

I am not meaning to come over like a cheerleader for Gilenya!