I went for my first dose yesterday. I started on the trial to see if it works in primary progressive MS. Of course there is a possibilty that I am getting the placebo. So I was there for about 7 hours. Boring but not the worst thing I have ever had to do. My blood pressure/heart rate stayed pretty much the same throughout. I got a little dizzy/nausaus a couple of times but I get that anyway. Got hives all over me. probably the worst I have had them in a long time last night. But I get hives from stress, cigarette smoke, some perfumes and some laundy detergents so I am sure it wasn't caused by the pill. Today I am a bit nausaus/stomach feeling yucky after taking the pill but that could be other things too. Very tired yesterday and today but starting to get out of the funk a biit. I get tired/can't sleep anyway. So all in all I guess I am not feeling anything from taking the Gilenya (or placebo). I will try and keep my progress posted. I go for blood work and stuff on July 7, I will post that if they tell me the results. I think most stuff just goes to the research center without anyone seeing or knowing anything. I think we only findout if there is a medical need to do something about it. Like if I get infections, cancer, liver problems, heart problems, etc. Anything minor that will work itself I don't think will be reported. You started taking yours on 3/30. How are you doing with it? Hugs! Selena

hi yeh it makes most a little sick but take it at night-- i learned the hard way, but it has some good results- its a chance anyway- maybe we can pave the way for the younger generation! -
hugs tickey

sorry- lol you only 30!! - should of looked first!!

30? I wish. 47 but if you insist I can be 30! LOL

I'm starting to worry about my PML risk associated with taking Tysabri as I'm coming up on the one year mark. In talking to my doctor about a change, my choices are 1) continue with Tysabri; 2) try Rebif (I've already done copaxone and Avenox); or 3) try Gilenya.

Gilenya scares me as much as Tysabri does. The experts don't know what long-term side affects come with this new drug. My doctor even confirmed that thinking, because it i so new, nobody knows what can happen to folks taking this new medication. I just had my first MRI since starting Tysabri, and my MRI showed shrinkage of one particular lesion by more than 50%. Since Tysabri seems to be doing so well for me, I don't know if i should change therapies. Rebif offers the most secure treatment, but I'm not looking forward to any side affects. Horrible side-affects is the reason I left Avonex.

I just thought it was interesting that nobody has said much about the long-term side affects o G. Has anyone heard anything? Is anyone worrying about the long-term side affects like I am?

It would really be nice to have a sub-group on this subject. Any takers? There is really nothing you have to do, just request permission from DS to start the group, and then inviting some members. Think about it?!?

me personally not wooried- i think anything can happen anytime with anything- so? i guess for me the chance of helping is very much worth the risk- im just over it!!lol tickey

Everything has it's side effects listed. We don't know how it will effect us until we try it. Me. I got all anxious about that stuff. Didn't try Ampyra until 7 months after I got the prescription for it. No major stuff happened. Got hear burn real easy and a little bit of a back ache. Nothing major. I found Ampyra didn't make a big difference so stopped taking it. I don't like taking meds so won't take them unless there is a big reason to. No enter the trial for Gilenya. Yes, I am concerned about the side effects and long term effects. It seems most of these disease modifying drugs are immune suppressents opening up the door for many other problems. Cancer, infections, etc. Thinks about it. Your immune defenses are being either destroyed or diverted elsewhere so they aren't going to be doing a heck of a lot in protecting you against diseases and infections. But maybe they are going to protect our nerves from further damage. I figure at this point it is worth the risk. My alternative? Wait around watching everything stop working, become bed ridden and on a feeding tube. I don't know if I am even on the real Gilnya or a placebo, or if this will even work. I do feel like I am trying something to fight this,keeping hope alive. As for the Tysabri. That scares me more than any of these drugs. I would take Gilenya and it's unknown future problems over Tysabri and the risks associated with that drug. Best of all, no injections. Let's just hope and pray we don't see any new problems over the long term. Let's continue to hope and pray that there will be a cure for this horrid disease soon. No matter which version you have of it, it sucks and takes so much from us.

Also, my fingers don't work that great anymore so please excuse the missing letters in some of my words. I try to recheck it all before sending but I still miss some. I think a Gilenya topic discussion place is not a bad idea. I don't know how to do this but will be happy to become a member if someone else does.

my fingers dont either- but not bad at times- and im like you id like someone to start a gilyna site- but have tried , -hey you start one!!!
i dont have a clue how to, hugs tickey

I have been on Gilenya about a month and a half.

I didn't have any heart rate slowing or anything. The first 2 weeks I was dizzy and neausous much more than usual, even taking it in the evenings. But by the end of the first month, I felt completely back to normal on those issues. The first 2 months are the most intensive on your body as that's when the most sudden changes occur, then it's just maintaining.

Now I feel normal, no real side effects. I'm more tired than usual, but I think it's just because I'm in a down phase. I see my neuro tomorrow and we'll see what she says.

As for long term side effects... Yes, I worry about that. But I also worry about the long term side effects of drinking from plastic bottles, eating fake sugars, hydrogenated oils, etc etc etc. These days, nothing is safe. I'll take my changes with something that has the chance to improve my long term quality of life. Each of us has to make our own choices though, and I understand both sides.