Starting Gilenya....

[DebbyV]

Hi Everyone, well I tried the Copaxone for about a month and it was horrible. I would cringe when it was approaching the time to take my injection. The stinging, the burning, nevermind the lumps it left in my skin. So, my doctor stopped that.

He wants to try me on the Gilenya. I've read up on it a little. A little scared, to be honest. The fact that it hasn't been around that long kind of gets to me. And I've read on here about the "racing heart" that REALLY scares me. I suffer from severe anxiety already and that is one of my symptoms when I get real anxious.

Please HELP!! I'm so new to this, I was diagnosed in late June and I just feel so lost.

[HereIam]

Hi Debby,

Sorry to hear that you got to a rough start with your treatment.

Being newly diagnosed is such a confusing time, with decisions to make while you are absorbing the fact that you have been diagnosed with MS.

You need to have a neuro that you trust, and back that up with research on your own time so that when he makes recommendations, you understand

Personally, I would think that going on to Gilenya after a month of Copaxone is a very aggressive move, and not one I personally would not make. These new drugs, with more serious side effect potential, should really be employed for those who have failed on safer options. And, by failed, I mean relapsing.

IMHO, I'd say you've got to get beyond your psychological reaction to the Copaxone injections. It is a very safe medication that has been on the market for a very long time. Yes, it's not fun to get a bee sting every day, and to have lumps that can be sore for a day or two. However, if you weigh that against the damage that could be done by not using a Disease Modifying Medication, then those stings and lumps seem very insignificant.

I have been on Copaxone for a long time, and it has become a part of my day that I barely think about. That's where you need to get, and it doesn't happen in a month. Pick a time of day, for me it's 6:30 p.m. Have your injection items set up in the most efficient way you can. I have all of my items laid out on my own shelf in the bathroom, along with my rotation chart. So, it's easy peasy.

Swab the spot, load the injector, hit the spot, press on it for moment with a cotton pad, dispose of the used syringe, and then walk away and carry on. That's the most important part. Get your mind engaged in something else immediately after injection. In the shower, massage the lumps formed by shots that are over 24 hours old. It really helps.

I hope this helps you. I personally would be uncomfortable to be put on Gilenya a mere 4 months after diagnosis. You just haven't had enough time to make that leap, you need to become more informed and motivated to do what is the best for your body and life.

Perhaps the fight answer is Gilenya, but don't just jump to it because you had bee sting lumps.

[MrsBones]

A lot of people go on Gilenya as a first choice. The FDA did review its safety profile before approval because it was anticipated that it would be approved as a second line drug. The FDA allowed it as a first line drug with all the umpteen safety notices you see in their literature.

I took Copaxone for three years. I've also taken Rebif and Ty. I completely understand stopping Copaxone because of site reactions. Some of us go beyond the average lump that lasts a day or two no matter what we do. Some have intolerable pain from it.

The reactions usually lessen 5-6 months in and sometimes stop altogether. Manual injections help, too.But , really, why torture yourself?

There's the other CRABs and Gilanya to try. If your dr feels Gilenya's a good fit for your health and you are comfortable with it, then switch. There's nothing to stop you while you still have options.

If Gilenya is out of the question for you, consider Rebif, Betaseron or Avonex. Your dr wants to try Gilenya and he may have specific reasons for wanting to try Gilenya, but it is your choice. Talk over his reasoning and your fears of Gilenya with him.

Maybe he'll ease your fears and give you good reasons you should try Gilenya. Maybe you'll still be uncomfortable with it and he'll rx a DMD you are comfortable with. You can always try Gilenya later, after you have more time to research.

Making your initial drug choice is difficult. A second one is more so as you've already eliminated your first choice and are left choosing between drugs you turned down the first time around. Just remember that no side effect is guaranteed with any drug. You could just as easily have every listed side effect or none. Well, not every one, but you know what I mean.

It's a tough choice. I wish you the best of luck with it.

[HereIam]

Hello Again Debby V, After re-reading your post and my post and then Mrs. Bones' very wise and intelligent answer, I retract all that I said and say skip me and listen to Mrs. Bones'.

I have projected into my answer my personal unwillingness to go on any treatment that hasn't been on the market forever, and that makes my answer very unfair to you and biased.

Not everyone can tolerate the Copaxone Daily Injection garbage, and it's the #1 reason people stop the drug. That you are among those doesn't mean you are unreasonable or a coward or any other such thing. I just means you are one of the people who cannot tolerate it (and I admit some of it is absolutely intolerable) and thank goodness there are other options available. Many of them are more effective than Copaxone.

Thank you Mrs. Bones, I really truly no kidding appreciated your insight.