Drug Choice

[pjr2012]

45 YO male - Just diagnosed and I've been handed information for Extavia, Avonex and Copaxone and told to "choose one". I've read what they gave me and looked at some other sites and am no closer to a decision. Is there information on what might work better for late onset with males? I don't care about injecting myself. Does one just pick and see what works? I would lean toward Avonex since it's a weekly injection versus daily. This is all very overwhelming.

[beadyeyes]

Hi pjr. I am not male, but I was diagnosed when I was 52, 11 years ago.

The treatment I chose was Copaxone, primarily due to it not being interferon and having less debilitating side effects. I have been on it since 9/01 and it has kept my MS in check until this year. I did have a couple of major flares in the first few years on Copaxone and several minor flares through out. For the most part my symptoms remained the same and didn't progress until earlier this year.

I had a major flare in Feb/Mar (first major flare in about 7 years) with the onset of new symptoms and progression of old symptoms. The neuro I started seeing recently is suggesting that I change to a more aggressive DMD like Tysabri or Gilenya.

It has taken me a couple of weeks of research, discussion and deep thought to decide that I have done well on Copaxone and for now I will continue with my current therapy...if it comes to be that it is not working for me any longer I will revisit my decision.

[Bob698]

What works better is the one that works better.

Sorry to be cryptic but I don't understand why Neuros don't explain this better when prescribing one of the CRABs.
This is a long process, figure 6 to 8 months before your doc thinks your med is effective or not. Its possible you'll have to deal with some flu-like side effects at first. Some people have them, some don't. If you DO get the "flu", its easy to avoid, just take what you'd normally take for a flu or fever before you do your shot. You'll also be doing what's known as titrating up to your full dose for a couple of months. So stay patient.
Its also possible you can have more leasions show up at first. This stuff doesn't work overnight.

One thing to be careful about- you're still giving yourself a shot every other day. Take that with the importance its due.
We're guys, we don't like to make a big deal out of anything, but giving yourself a shot means you could also mess up and give yourself an infection. Learn the right way to do your injections, then stick with it.

-NO doing your shot while you're in the middle of changing your oil or putting up drywall.

-NO doing your shot while multitasking other things.

-NO doing your shot in the middle of a paintball tourny because it'll flip out the other side.

-No doing your shot to impress or freak out other people.

- NO cutting corners because you're in a hurry.

Find the right routine and stick with it.

[jojo18]

i would also add No doing your shot while trying to land a 747

[MarkLavelle]

45 YO male - Just diagnosed and I've been handed information for Extavia, Avonex and Copaxone and told to "choose one". I've read what they gave me and looked at some other sites and am no closer to a decision. Is there information on what might work better for late onset with males? I don't care about injecting myself. Does one just pick and see what works? I would lean toward Avonex since it's a weekly injection versus daily. This is all very overwhelming.

Welcome and sorry you're here.

I've never seen any DMD info broken out by gender.

My doc only offered Copaxone because my immune system has already been compromised (cancer, chemo & radiation in the 90s) and Copaxone is the only DMD that does not suppress your immune system in any way. Seeing how an immune system can be so handy , I kind of like the idea of mucking it up as little as possible. So I probably would have chosen Copaxone anyway...

[Cat Mom]

Bob's so right, I don't recall too much info from my neuro regarding the meds so it's good that you found this site where you'll hear the good, the bad, the scary, the successes from those of us who have experienced it.

I'm a 46 year old female, here's my DMD story, hope it's helpful. Dx in 2005, went on Rebif which didn't work for me so switched to Copax in 2007. The flu like symptoms from Rebif were worse than my MS so I was glad for the switch, a daily shot was a small sacrifice to have good days again.

Since Copax, I've only had 2 steroid-worthy flares (2008, 2009). No new lesions since then either.

I hope that whatever you choose works well for you. It's overwhelming at the beginning so be kind to yourself and ask lots of questions.

Regards,
Jen

[Daisy Dead Petals]

I remember being so confused about choosing. My dr too said "pick one"... scary I know. My minor two cents about choosing a med is take your time, don't rush yourself. A few weeks won't make a difference.

Consider the side effects, which affect each person a bit differently. Know your body and pay attention to your symptoms. They often come and go. Keep careful records of your tests.

avonex
copaxone
rebif
tysabri
ldn
and gilenya have all been prescribed to me. Tried them all and came to learn that interferon meds are harsh on me but they help a lot of other people. Take some time to read up on the experiences of others but don't get too caught up in the negative.

We're all here with you.

[pjr2012]

Thank you everyone. I thought I needed to start this as fast as possible, but it sounds like a couple extra days won't cause disaster. I only have the optic neuritis as a symptom so far but my MRI was a disaster so they're sure it's MS. I was really hoping for lymes disease! I found an extract in the National Library of Medicine database on a study the showed people with less severe symptoms at onset doing well with Avonex so I may give that a go. Kind of sounds like you're injecting a hangover by the various blogs I've read. If it's too much I guess I can switch to Copaxone. The "second opinion" neurologist added Extavia to the list and it sounds like that's a little bit stronger approach but most of this stuff is so cryptic I can't really tell. Thank you again for all the responses, I feel a lot less alone.

[Bob698]

I should also try answering the question.

Does it matter which med you pick?

Kinda, but you won't know for a while.

There's two things to consider with DMD's and this is where it can get confusing.
There's the main effect you want, namely is the med doing what its supposed to? Is it keeping your MS progression in check? The only way you'll find this answer is to get more tests later on. If your MRI's look good and you aren't noticing new symtoms, that answer is yes. If your Doc looks concerned after 6 months or so, you may be heading back to the drawing board to try something different.

There's also the convenience factor. Namely, how much of a pain in the butt is this med to take? This gets a little more confusing because this part of the deal breaks down into different things from possible allergic reactions to figuring out you can't afford it financially to trouble building up a tolerance to the med. The med may be doing its job but its effecting you so badly that you're thinking it isn't worth it. BTW, this part isn't about building a tolerence when you first start out. Some folks breeze thru the first stages with no problems. Some of us don't and it takes a while to get used to this stuff and what its doing.

I take Beta which is pretty close to Extavia. I wish I could tell you I just breezed thru the getting used to it part but the truth is that it wholloped me pretty good for the first four months. It was worth it, however, because the results that really count have been fantastic.

[Nanobaby]

Hmm, segregating the DMDs by gender...very interesting It actually makes a lot of sense based on different lifestyles & exposures based on gender, before & after dx/tx. And sex impacts the dx given that female sex is one of the predisposing factors to developing MS...

Can't help but be fascinated by this

I myself am on Avonex. I love it...as much as I can love stabbing myself once a week in the thigh with a medication that is dispensed to me because I have a crappy neurological disease, lol.

Hope you find the right DMD for yourself!

[Camsue]

Thank you Bob698..your post is hilarious and true!

I also have been on Betaseron, an interferon for 17+ years and it was nasty at first, but I was also working then and had 3 children at home.

Now the morning sx are not bad at all, especially when I 'pre medicate' with ibuprofen or similar when taking the med.

Good luck pjr

[happy42day]

Thanks for the laughs!

Ha to Bob's post!

I can't answer the original question, but Bob you sure did give me a good laugh with your response!

Ahhhhh....we all need that here.

[woodstock]

I'm 49 and was dx last year at age 48 when I had my first sx of numbness in one side of my face, arm and leg. I have five brain lesions, 2 that are measurable. My first neuro handed me a stack of books (one on each of the MS meds), told me to take them home, read them, and come back and tell him what I wanted to take and then he'd tell me what he was prescribing. I switched neuros.

I work full time and with the new neuro chose to start on Copaxone even though I hate, hate, hate needles. It had the least side effects that I thought might impact my daily life and I was definitely not a fan of spending days with flu like symtoms, so for me it was a no brainer. It's a daily injectible and I do have injection site reactions for now. I inject at night to make things easier and so far it seems to be working.

[Thinkimjob]

I suppose at least there are some drugs to choose between these days.

Over here, some neuros are prescribing Tysabri right from the start, which I would have found very confronting.

I chose beta 13 years ago entirely because it was 'only' an injection every second day,not every day like Copaxone.

I did not fancy the idea of Avonex and injecting into a muscle.

Not the greatest way to choose a drug, but as good as any.

I'm on Copaxone, soon to change to Tysabri, and suddenly that nice little daily needle doesn't seem so bad.

Mind you, it's not working anymore, so something must be done.

I was so looking forward to Gilenya - tablet a day, aaahhh - but I'm not allowed to have it. (Family history of dicky tickers and macular degeneration.)