How many DMD's have you tried?

[KSeraSera]

I need to make some decisions regarding my DMD. I know there are a lot of variables and changing is recommended sometimes. I'm just wondering how many other folks have tried and did you change because of side effects or because they weren't controlling the MS? Thanks for any input you can give!

[pjsSissy70]

Not sure how much help I could be. I have MS for 20 yrs and am only on my 2nd dmd. I was on betaseron for about 9 months, 10 yrs ago. I stopped it do to side effects. Im now, just very recently, on copaxone. Havent been on it long enough to decide anything about it. It has this aweful stinging/burning right after the injection. But that goes away usually in about 10 minutes. I figure I can handle that to try and control this beast (MS). Good luck to you.

[heliotrope]

I've been diagnosed for two years, two DMDs and one "substitute." Started with copaxone and ended up with really bad site reactions. Betaseron knocked out my ability to walk (I limp without it, with it I could barely stand). I've also done IVIG. I think it really depends on how your body responds. From what I've been told my reaction to copaxone isn't common and my reaction to Betaseron even less so (like 5%).

[hunterd]

tried avonex, but built antibodies to it, so rebif wasn`t an option. tried tysabri, same result. tried copaxone, same. now get IVIG infusions.

[KatieDidNOT]

I was on Avonex, but eventually developed an allergy to it. Went on Copaxone for 3 shots, had a rare reaction that can cause bone problems.

Of the two, I liked Copaxone best even though it stung like heck for five minutes or so...did the shot, drank my morning tea, went on with my day. Wish it would of worked out for me.

I am possibly going on Ty in May. Have not made a firm decision on that yet.

Katie

[owlnona]

I've been Dx for 12yrs. & been on Rebif from the start.
let us know what you decide.

[dpmich]

I was on Betaseron for 5 years. It did it's job and kept me down to just one flare. I had to stop last summer due to reactions I was having. Switched to Avonex in September 2011. I had a flare at the start, I think it was due to the wash-out time (between dmd's). Haven't had any relapses since then.

Debbie

[Scooter24]

I started on avonex but never felt good while on it, had avonex hangover and by the time it went away it was time for the next injection. I stopped it while under going cancer treatment, Tried Copaxone next but could'nt handle the daily injections and as on avonex never felt right. took a 4 month vacation from all meds then started on Tysabri, I also started on ampyra 2 weeks after starting the ty, I have felt much better on these and have gotten my life back, it took me over 2 years to get over the effects of radiation but as I said I noticed a difference prior to those sx going away.

[Mynamegoeshere1]

Meds

I started on copaxone but only for a month due to an allergic reaction. I had a relapse during the time between medicines, but now I'm on Betaseron. I'm doing well on that, except for the injections in my butt area. Most people say those are easiest, but my body just can't handle those. Good luck with whatever you choose. Your body is different from all of ours so what works best for us, might not work best for you.

[04blackcobra]

I was dx 6 years ago. Have been on IV steroids,avonex,copaxone,acthar,tysabri and now gilenya. stopped most due to side effects.

[Alicious]

I started on Copaxone and switched after 15 months after a bout of ON and a mild flare in the span of three months, along with a new spinal lesion.

I just started Rebif, and, well...I puffy heart Copaxone. I wish it had been the drug for me, because Rebif is kicking my hiney. Then again, I remember disliking Copaxone at first too, so maybe it's a crap shoot.

[CougarMama]

I started on Avonex after diagnosis, but I just couldn't handle the flu-like effects (honestly, if the flu felt like the side effects of this drug there would already be a cure!) I was on this for 6 months and had 2 flares.

I then started on Copaxone and did not have any side effects but break through flares.

I'm now off to Tysabri.

Pregnancy worked best for me though. Never had a flare and had lots of energy. Now why can't they sell that in a pill or shot? good luck on your decision.

[agate]

I've had SPMS for more than 30 years and DMDs aren't known to help people like me but I tried Avonex for 3 years--stopped it when I passed out and fell a couple of hours after the shot.

Later I was on Copaxone for nearly 3 years. In general it was much, much easier on me than Avonex was. The skin reactions were mild compared to the flu-like symptoms and depression from Avonex.

But because of "bowel urgency" that developed in the third year, I stopped Copaxone. I was spending a large part of the day in the bathroom.

[jojo18]

i have had MS for 8 years, and am on my 7th(or is it 8th?) DMD. i switched (or my neuro switched me) b/c they were not working, or not working as well as hoped.

avonex- was on for a year or so. the side effects suck, but can be minimized. i took ibuprofen 2 hours b4, two hours after, and 4 hours after that. forgot to take it two hours after one time; spiked a fever of 104.1 with chills, nausea, b0dy aches...

rebif- was on for four years. had minimal side effects. i also took it right b4 bed so any happened while i was sleeping. worked well, just not as well as hoped.

novantrone- had 4-8 treatments of it. didnt help. its alow dose chemo

copaxone- had minimal side effects. didnt work. was on it for 6 months

diclizumab- experimental drug. on it for 3 months. didnt work

tysabri- im deathly allergic to it

rituxane - currently on it. techanally not a approved MS drug, but its working wonders for me. been on it for a year and a half. im pretty sure i have a life time limit. ill be very very sad when i reach it

[TEEBIRD]

Started on Copaxone

Did a year and a half of Cytoxin ( chemo)

Rebif

Avonex...............allergic to Copaxone, Rebif, and Avonex.....no need to try Betaserone

I've had 19 Tysabri infusions.......due to lack of funding I had my last Dec 2011


I am scheduled to start on Gilenya April 2012