I need your opinions and experiences. Please help....

[mom2abcd]

Hi everyone...

I was wondering if I could get some input from some of you about your experiences with the oral medications....

I've been on Avonex 30 mcg since I was diagnosed with MS in April 2009. I've been very fortunate and have not had a relapse since my initial diagnosis. Recently (within the last year) I changed to the AutoInject pen. Everything has been going well. As long as I take ibuprofen before and a few hours after the injection, I have minimal side effects (flu-like symptoms, chills, the norm). The only thing I have complaints about is the incredible headaches I seem to get from the injection for the first few days after it (usually about 2 to 4 days). I take a pain medication and a muscle relaxer to manage these symptoms. Obviously, I'd rather not be on pain medication forever so after speaking to my neuro a few months back, he suggested I try one of the oral medications. I'm really leery about changing things since I've been doing so well with minimal side effects, no missed work, and no relapses (KNOCK ON WOOD!!!), why mess with it if it isn't broken, right?

The thing that scares me more than anything else is how new these medications are. It always seems that a new med comes out and all the hype is fantastic until a few years down the road they find out that it causes you to grow a third arm or something equally as scary such as cancer or something else.

At the time he mentioned the switch, I was adamant about sticking with the injections; however, now, I'm so tired of the headaches and taking medications to help with it that I'm considering a switch to something less painful and hopefully with less side effects.

I would love to hear some of your experiences with taking these oral medications and what you think of them.

Thanks in advance for any input.

Krystal

[kingseth2]

Hey Krystal,

I tolerated Avonex from the time I was first diagnosed in March '06 through the fall of 2010. My flu-like side effects were unbearable. At the time I was probably taking 3-4 other OTC meds after injecting, just to counter how awful Avonex made me feel.

I switched to Gilenya the first day it was available, back in November 2010, and have not looked back since.

Go for it!

Seth

[Alicious]

I've taken Aubagio and am now on Tecfidera. One thing I like better about Tecfidera is that it is out of your body within about 4 hours. Aubagio, on the other hand, stays in your bile, and bile clearance is 18 months -2 years unless you take more meds to rapid clear. (I did that, it wasn't a big deal, but there you go.) It was a psychological thing for me; I like knowing that if I stop it, I have really stopped it, you know?

Of the oral medications, Tecfidera has the best safety profile. It has also been studied for many years, although at different dosage/length of time on meds, so who knows.

Aubagio is the metabolized form of Arava, which has been on the market for rheumatoid arthritis for years. So, lots of safety data there. It's not a guarantee, of course.

Gilenya is the one I am not familiar with, and don't see myself taking, as it has the spookiest safety profile. Then again, many people love it.

I say do some research about which one you are most comfortable with. Also, as you read threads, remember that people are far more likely to complain than to post good stuff. Meaning, for every post about side effects there are many, many more people not posting because they are doing fine. (And complaining about side effects is totally OK, I do it myself. )

[newbie but goodie]

Hi Krystal,

I've been taking Gilenya for 1 year and actually feel noticeably better. My last MRI scan at 6 months showed a decrease in lesion size and no new ones (I had been getting at least a couple new ones every 6 months on my old med).

I do have a lower white blood cell count but it stays steady and I have blood work every so often to monitor.

It's only been a year though, so the third arm won't have had time to grow yet

[REG53]

Hello mom2abcd,

I have been on tecfidera for almost 8 mos. I had very little side effects in the beginning but none since. So far I am doing very well.

I hope you do well with what ever you choose.

[tjfl]

I have taken 3 different MS medications. I started on Avonex when I was diagnosed in 1999. I switched to Beta Seron about 8-9 years ago. Now I'm on Aubagio and have been for a little over 2 months. Overall, I'm very pleased. I have some stomach issues with taking the drug but they seemed to have gotten much better. I was also VERY tired the first week of taking it. Who knows if that was b/c of Aubagio or just the disease itself. I have experienced a few days with shortness of breath. All in all I would take these symptoms over the symptoms I had with injections any day.

[PositiveMS]

I only ever did Copaxone injections for a year, then switched to Tecfidera. I always felt so weird on Copaxone! I love Tecfidera and have been on it for just over 5 months. No real side effects.

I thought about the fact that these drugs are so new, but honestly, I would rather be on a pill and take a slight risk with what might or might not happen down the road. It allows me to live right now. And yes, Tecfidera has a 6 year + safety track record.

Also, I think I would gladly grow a third arm if it meant I could get 100% mobility back. Not that it's a decision I'll ever have to make.