Which Med?

[samantha12]

I need some personal experiences from ppl that have tried the different meds available. Good bad, ugly. My dr. wont suggest one, wants me to pick!

[BigA]

Your doc is doing his/her best to be unbiased, even though they may get paid to speak by the pharmaceutical companies.

Here's a quick one:

Really active, bad MS? Tysabri
Normal, beginning, RRMS? Copaxone or Avonex
Moderately active RRMS? Rebif or Extavia

Here's the reasoning:

Copaxone is the safest with the fewest side effects, but takes 6 months to full effectiveness. Once you're on, it seems to get better with continued use and you incorporate your shots into your daily routine. I recommend it as a first choice.

Avonex is an Interferon, takes 3 months to become fully active, but comes with more risks of depression, liver damage and those flu-like symptoms are serious - they're not the "I feel light headed and tired" kind of symptoms, more like the lying in bed curled up with body aches. Now not everyone has them this bad and whatever you get, they do get better. It's once per week, which is nice once you do.

The most important thing is that whichever you choose, may not work and you may have to switch to the other. So even though it seems like such a monumental decision, it isn't. Choose one and get started and find out how you tolerate it and whether it works.

[techie]

Check your Insurance too

That may influence you opinion. Or just get a dart board and throw the dart.
There are a lot of choices now. Kind of *** *** * that your Dr. won't at least recommend one for where you are at.
You could also make a list of the order you might want to try them.
Keep a positive attitude and you will be more apt to have good results.
techie

[Mynamegoeshere1]

Dr

My doctor did the same thing. I researched all of the medicines and put them in order of which ones I would prefer to try from 1-(I can't remember how many made the list). I then called my insurance and found out the copays on each of them. I also looked up each of the co-pay assistance programs to see if I would qualify for any of them as well. I did a lot of research, but it was all basically for nothing. I started on Copaxone but had a really bad allergic reaction to it so had to stop it.

My next one was Betaseron and I progressed rapidly on that one so I was finally pulled from that one. Next Monday will be my first infusion of Tysabri so we will see how that one will work. I have been really tired with it so far and irritable, but that is better than the others at this point.

I would still do your research and base your initial opinion on what works best for you. I chose copaxone because I have a history of PTSD and depression + anxiety. It was the only one with no depression side effect. I got really scared of of the others because of that but I haven't had any depression with any. Good luck on your decision and let us know how it works out for you

[Bob698]

Just don't assume that stronger is better. It all comes down to which med will be most effective on your MS.

You could try saying to your Dr., "If these were your test results, what would you take?". What your Doc is saying is that your first med may well be just that. The trick is to find the right one for your disease that the rest of you can tolerate.

Your basic choice boils down to The Interferons and the Non-Interferons. The Interferons require that you get used to needles, one of the Non-Interferons (Copaxon) is also a needle. The rest are newer oral drugs except for Tysabari, which you should save as a last resort (Ty carries some more risk than the other meds and is given as an IV infusion).

I think the vast majority of us opt for one of the Interferons. While the needle part can be a drag, they are all mostly effective and we adapt quickly (I use Betaseron).
The orals may be an option depending on what your Doc thinks. I don't want to make this confusing but the oral meds seem to work better on "weaker" types of MS or if you've shown a definate allergy to the Interferon meds. The orals also tend to be more expensive and they don't have the track record, yet, that the older meds have (meaning, we just don't know if there are long-term risks).

Whatever you choose, you should be aware that your choice isn't carved into stone. This is where being patient helps. It can take six months or more to judge how effective a med is for you. Many of these meds will also require that you build up a tolerance to them, sometimes building that tolerance isn't a lot of fun.

[ru4cats]

I recommend the YouTube series "Wellness and multiple sclerosis: why it matters" by Timothy Vollmer. He goes through all the current and future medications, pros and cons, and gives really good background info. This should help.

[Mynamegoeshere1]

oops

I meant to write I am going for my second infusion on October 15th. I bought Multiple Sclerosis for Dummies as soon as I was diagnosed and it explained all of the medications for me in other ways also that the internet could not. That might be an option as well. It sounds stupid, but it had a lot of information in there that helped me in other ways also.

[Westgrl]

I meant to write I am going for my second infusion on October 15th. I bought Multiple Sclerosis for Dummies as soon as I was diagnosed and it explained all of the medications for me in other ways also that the internet could not. That might be an option as well. It sounds stupid, but it had a lot of information in there that helped me in other ways also.

It's funny, I just bought this when I came across it on my Kindle & almost felt ridiculous for buying it just because of the name. It's honestly the best laid out book that explains literally everything. I'd recommend it to anyone newly diagnosed.

[Westgrl]

I have needle anxiety. While the one & only pill, at the time, sounded great, I wasn't so sure about the side effects. My doc rattled off all the choices. Which were IM and which weren't. All I kept thinking was, which will have the smallest needle & the least amount of injections?

He must have seen the look on my face so he said he would suggest Avonex since it was only once a week & it's been around awhile but that they were all good & the decision was mine. But an IM shot sounded bad. Then he jumps & says, "Oh! They just came out with a new pen. It has a smaller needle and you don't see the needle."

Those were the magical words. "You don't see the needle". I immediately, almost shouted, "I want that one!" lol

I guess we all have different priorities. lol Fortunately, so far, it was the right one for me. I don't suffer from any side effects at all, no needle anxiety & just one shot a week.

[Mynamegoeshere1]

Needles

I feel you on the needles. I couldn't even give myself a shot even though I couldn't see mine either because of the auto injector, so my husband had to give it to me. I am very glad this is working out for you. Great News!

[Special Kay]

I recommend the YouTube series "Wellness and multiple sclerosis: why it matters" by Timothy Vollmer. He goes through all the current and future medications, pros and cons, and gives really good background info. This should help.

+1 to this advice. It is an excellent series of videos and very helpful in understanding which meds for which kind/stage of MS.

Also remember that you may switch meds and probably will at some point, so the decision you make now can always be changed. (And new meds are always being developed.)

[BigA]

I have needle anxiety. While the one & only pill, at the time, sounded great, I wasn't so sure about the side effects. My doc rattled off all the choices. Which were IM and which weren't. All I kept thinking was, which will have the smallest needle & the least amount of injections?

He must have seen the look on my face so he said he would suggest Avonex since it was only once a week & it's been around awhile but that they were all good & the decision was mine. But an IM shot sounded bad. Then he jumps & says, "Oh! They just came out with a new pen. It has a smaller needle and you don't see the needle."

Those were the magical words. "You don't see the needle". I immediately, almost shouted, "I want that one!" lol

I guess we all have different priorities. lol Fortunately, so far, it was the right one for me. I don't suffer from any side effects at all, no needle anxiety & just one shot a week.

LOL. Yes, it's been a revolution. It's so easy.