HELP!!! What DMT should I choose???

[MK Smith]

What should I do???
I was diagnosed Aug. 2010 and went on Copaxone, but had a flare this past Sept (14 months after my first flare and DX) and am now having another flare, it hasn't even been 5 months!!! So I am having to go off the Copaxone and was sent home today with info on Avonex, Rebif, and Betaseron and I have no idea what to do!!! I am really nervous about the flu like side effects of these, I have no fear of needles so that is no problem, any advice I can get I would really appreciate.
I am a busy mom with 5 kids ages 3 to 12 and I'm very active and always on the go so I can't be feeling crappy all the time!
Thank you!
Melissa

[FL_Jhawk]

My Beta side effects haven't been too bad, but it is sometimes difficult to know what effects you feel are being caused by what!

I like Beta in that the needles are short and tiny. You hardly feel a thing.

[TLC_31]

Melissa, the flu-like side effects are usually manageable with a regimen of hydration, timing of injections, and use of Tylenol, Advil, Aleve, or whatever one of those meds suits you. The effects usually lessen over time. Even at their worst, they’re far better than a relapse.

You're accustomed to frequent subQ injections, so the Rebif and Betaseron might be easiest for you to adjust to. But Avonex has its advantages too, and the longer needle doesn't necessarily mean more pain. You still only break so much skin.

Speaking of Tylenol, Advil, and Aleve … choosing between the DMDs is a little like choosing between those OTC meds. Some work better for some people, and you don’t know until you try. If they don’t work, or if you react adversely, you can try a different one. You may try X, then change to Y and stick with it because it’s mostly tolerable and seems to work. You never try Z … and it’s entirely possible it would have been the perfect one for you all along … or it might leave you with increased disability. Such is life with MS.

I’m not sure five months is long enough for Copaxone (or any DMD) to have been given a fair shot, so you might consider staying with that. I had a relapse two or three months after starting Avonex, and then again about two years later, but nothing since.

[owlnona]

Hi MK! I've been on Rebif for almost 12yrs now. I always take my shot before bed & sleep thru any bad reactions. I've only had 2 flares after Dx the worst one caused by an awful Ecoli infection.( long story). My neuro left the choice to me & he was glad I picked Rebif.
God Bless keep us posted Nona Judy

[Nanobaby]

I've never been on a DMT prior to last week (on Avonex now).

What I liked most about Avonex is the it's a once a week injection, and the flu-like side effects diminish over time.

Hope you'll find the right tx soon

[KatieDidNOT]

I am a busy mom with 5 kids ages 3 to 12

Five Kids=Avonex

You will need to ensure someone can take care of them for 1-day a week. It is a shame you can't remain on Copaxone. If your flares were not real bad, I might talk to your Neuro again...there are new drugs in the pipeline. Maybe you can stay on Copaxone until then.

Best of luck to you!

Regards-Katie

[Bob698]

I’m not sure five months is long enough for Copaxone (or any DMD) to have been given a fair shot, so you might consider staying with that.

That's the first thing I also noticed but it sounds like Melissa's Dr. made the call.

[KatieDidNOT]

How I read her post is that she went on Copaxone in 2010 after diagnosis, then had a flare and then a second flare 5-months later.

She has been on Copaxone much longer than 5 months, but I could be wrong. Maybe the original poster could clarify.

Katie

[TLC_31]

Oops, my bad. Yes, 14 months on the Copaxone before a relapse, then 5 more months to another relapse. The drug probably has received a fair chance.

[MK Smith]

Sorry for the confusion!

Sorry for the confusion, I've been on the Copaxone for 18 months now. Had my first documented flare in August of 2010 and that was also when I got diagnosed and started Copaxone that September then didn't have another flare til Sept of 2011 and now having another flare so Dr. is concerned about flares so close together that is why she is wanting to change DMT.

I also had a flare in May of 2010 that began this whole thing when I started losing sight in left eye but didn't get dx til August so I've had 4 flares in 20 months.
Can anyone tell me Avonex vs Rebif if either one's flu like symtoms are worse are longer lasting than the other?
Thanks so much for all of your advice and posts, what a blessing to have help from others dealing with what I am!

~Melissa

[Alicious]

That makes more sense. I've been on Copaxone for 15 months and am switching to Rebif as soon as it arrives. I went 12 months with only one new brain lesion, but in the past 3 months have had ON and then a flare and have a new c-spine lesion, so we're moving on to another med.

Melissa, I'm a mom too, with 5 year old twin sons. I totally get how you can't feel crappy and parent well, and I have less then half the number of children! I'm trying Rebif first because it has fewer shot days than Betaseron but also slightly higher efficacy than Avonex, if I remember properly. If the side effects are too intense I'll switch to it, though. I have some wiggle room with kids in school as a stay at home mom, though. If you don't have the time to figure out if the side effects will be intense, I'd go for Avonex.

[MK Smith]

Depression?

One more question, I've heard that you are at risk of depression when on an interferon such as Avonex or Rebif, have any of you experienced depression due to these?

[Nanobaby]

Sorry for the confusion, I've been on the Copaxone for 18 months now. Had my first documented flare in August of 2010 and that was also when I got diagnosed and started Copaxone that September then didn't have another flare til Sept of 2011 and now having another flare so Dr. is concerned about flares so close together that is why she is wanting to change DMT.

I also had a flare in May of 2010 that began this whole thing when I started losing sight in left eye but didn't get dx til August so I've had 4 flares in 20 months.
Can anyone tell me Avonex vs Rebif if either one's flu like symtoms are worse are longer lasting than the other?
Thanks so much for all of your advice and posts, what a blessing to have help from others dealing with what I am!

~Melissa

The info packages I received both say that the flu-like symptoms for both typically last 12-24 hours post-injection and diminish after 3-6 months on treatment (if you even get them at all).

Hope the others on this board will be able to help answer your other questions!

[TLC_31]

Can anyone tell me Avonex vs Rebif if either one's flu like symtoms are worse are longer lasting than the other?

I don't think there's a large pool of people who have used both drugs, so I'll weigh in with my limited perspective.

Based only on reading from internet sites such as these, along with my personal experience with Avonex, it seems as if Avonex may have the slightly more intense side effects of the two, and it takes your body longer on the calendar to acclimate to the medicine. In other words, if you're destined to be particularly miserable for the first 12 shots, for example, that's three months in Avonex time but only one month in Rebif time. Of course, that one month may be rougher than any of the three Avonex months.

All that said, you can usually mitigate those side effects, and you may not have them at all.

have any of you experienced depression due to these?

The first two pages of the Avonex medication guide lists several things that could go wrong, including depression. Unless you're predisposed to one of those things, try not to let those warnings sway you too much. If you were to read the medication guides for the other medicines you take, including OTC medicines, you might never take anything. Just be aware of all the changes you go through after starting a new medicine.

I certainly can have my down days, but it's not depression, and even if it was, that could be attributed to the disease, not the medication.

[FL_Jhawk]

My doc wanted to put me on an antidepressant when I started Betaserone, but I didn't want to start down that path. For sure, at the time, I was depressed and he was concerned about that, but now after a month on Beta the depression has faded and I am doing ok. So, for me thus far, Beta is not causing any depression.

I don't know, therefore, if the depression attributed to the DMDs is actually caused by the drugs or simply due to depression caused by having MS, or by having the symptoms of MS, and/or by having to give injections to oneself. I mean, everytime you do an injection, you remind yourself that you could have a major flare up and lapse into a much worse state than you are in now. If you let it get to you, you could certainly fall into a state of deep depression.