Tysabri since February 2012, chosen by doctor
Copaxone since June 2008 after an unsuccessful 8 or 10 week try with Rebif. The latter drove my liver enzymes up and I never even made it up to the full dose. I had picked Rebif mainly due to the lesser frequency of injections, but I don't actually mind the Copaxone daily. In fact i think I'm less likely to forget a shot when I do it every day rather than trying to keep track of whether I did one yesterday or the day before. I've had one very mild IPIR in five years. No evidence of lipoatropthy. My relapse frequency and severity have both declined since I first started taking it, and so I believe it is helping. The two MS specialists I've seen here in Canada and one I once saw in Boston all said it is the one they'd pick if they had MS, but maybe they say the same thing to everyone to make us feel better, lol.
I'm not going to lie, the first several shots hurt like h e l l. And it took a while for the site reactions (large, red, warm welts) to dissipate. I rarely get a site reaction, and usually when I do it's a bruise. I'm satisfied with my choice. There are more options available than when I was dx'ed, and I may have chosen an oral if it were available, but now that I'm used to the shots, I wouldn't change unless it stopped working for me or if new side effects weren't tolerable.
Good luck tomorrow, hope it's not too rough of a day for you.
I was dx 10/2011. Started Tysabri 11/2011. My initial DX wasSPMS so do thought I was beyond the reach of first line CRABS. Blood converted to JCV + so 7/2013 was my last Tysabri infusion. Too bad, as I had been doing very well on it.
Next up is Rituxan, to be followed up with Tecfidera.
Kyle
Good luck with the appointment.
Rebif since mid-June and liver enzymes good so far. I love the Rebismart auto injector. The drug company folks and their nurse have been awesome and you get free supplies (needles, etc...). Not sure if others do that or not though.
If interferons don't end up working for me, Copaxone is my next choice.
I'm on Copaxone too, my doc suggested it and I chose it because it doesn't have depression as one of it's side effects which has always been something I've dealt with. She felt it was best to start with this one to avoid depression issues but also said it has the mildest side effects. It's funny, like doublevision said, my doc said Copaxone was the one she'd take too.
I guess I need to add that I've been on it for about 4 months now and doing really well on it. No side effects other than getting used to the injections but they're totally not bad once you get used to it.
I’ve been on Avonex for more than nine years, and it seems to serve me well. You could find other people that write that same sentence but simply insert another drug name. They all have success stories. There's evidence that they all work against MS, and it's good that you're also ready to join the battle against this disease.
I was on Gilenya for 19 days a couple years ago. Enough with the shots, I thought. Unfortunately, Gilenya might have been effective for me against MS, but it was affecting my heart, and I wasn’t going to stick with it long enough to find out. Sure enough, all of the DMDs have failure stories. But I would never discourage someone from taking Gilenya if they had researched the potential downsides.
ALL of the drugs have different kinds of side effects, which vary in intensity from person to person. Assuming you’re subjected to average or worse effect, which ones are you best equipped to handle? Your family, your job, your travel all factor in. You want to choose a drug that you won’t miss doses.
All of the drug companies provide free training and supplies when applicable, and they all have financial assistance programs.
If you give one a chance, you can always switch. Just give yourself time to acclimate (at least a few months, unless it's outright dangerous like Gilenya was for me), before you give up on it.
Check out this page for further guidance:
http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx
Ask questions anytime!
Thanks everyone!!
The verdict is in and drumroll please..... Rebif is the drug of choice for me :)
The ms nurse was really great and would have spent all day telling me about the different drugs but I had already done my research and had a few questions and she answered them well. At the end it was my choice an I hope I chose wisely.
I basically went by process of elimination ...
Avonox once a week seemed like I was going to ruin all my weekends being sick .. And rebif I am told is stronger
Tecfidera is not covered by my blue cross
I have done self injections before daily and twice daily and let me tell u I was counting the days to be done ... Even though I was a pro at that point so copaxaone was out the window first draw.
That left the betaseronn which I don't know anyone on and seemed like I did not know enough on it .. Maybe my bad but every second day did not seem fun either
Then there was rebif which has a fancy smanchie auto injector which was the highlight of my day ... I really was tired of injections previously so this will make life a little easier I guess :)
So there it is :) choice done ... One step at a time ... Just as my tattoo says :)
Sounds like a well-thought-out step, at least. We will pray that it works wondeerdulyy and keeps doing so.
You did what we try to get everyone to do - your homework! Going in preparedwith lots of information certainly made that appointment more productive. congrats on the decision - here's to the next step in the process.