DMD Decisions

How do you decide which DMD to take?

[saveone]

I am so glad you asked this question.  I had actually posted this at the end of the poll we had.  I will be interested to see what people say.

terry

[Lulu54]

usually you are going to make that decision in concert with your neuro, who may make a recommendation as to which DMD is best suited for your MS.  I did lots of research before I got to that point and knew which drug I preferred, based on the side effects.

An excellent resource about all the available DMDs is this one through the UK -

http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=1695

I went to this site several times and worked through their information to see which drug might fit my lifestyle needs best - this is an interactive quiz that helps you...

http://www.mssociety.org.uk/just_diagnosed_pathway/

I hope these help.  Lulu

[JonM]

I'll tell you what my Nuero told me and also my experience with Avonex.

Copaxone is the weakest and he did not recommend it for me.  Betaseron, Rebif and Avonex are essentially the same drug, Intefereon beta, administered in different doses.

My Neuro is a big believer in Neutralizing antibodies.
Avonex NAB rate is around 5%
Rebif around 10-15%
Betaseron 25-30%

NABs can bind to the active side of the interferon molecule rendering it useless.  So naturally (if you believe in NABs) you would likely pick the one with the lowest NABs.
However a lot of people have needle issues, and Avonex is an IM injection, which will freak out a lot of folks (it didn't me), So these people will likely opt for the small subcutaneous needle which doesn't freak them out so much.

Then finally there's the issue of side affects.  Avonex probably has the worse side affects of the three since its only taken weekly. Your body never gets acclimated to it. Its like coming down with the flue every week.  It lasts for 24-48 hours, can be managed with Tylenol and Advil and for many it lessens over time, For me it actually has gotten worse.

So I hope this helps you make a good decision.

Jon

[saveone]

Jon That was some very good info.  Thanks for sharing it.  

LuLu as always you're a big help to us all.

terry

[patientx]

When I was diagnosed, all the neuros told me to pick one of the 4 medicines.  Their opinion was that the efficacy was the same; it came down to how often I wanted to inject, and what side effects I wanted to tolerate.  In the end, I got into the CombiRx study.  I believe some doctors have a particular bias toward a DMD, but I am not sure the reasons for this.

I am not sure why JonM's neuro considered Copaxone the weakest DMD, or what weakest means.  It is a competely different drug from the other 3 DMDs, and its mechanism of action is different.

Also, Rebif and Avonex are exactly the same drug, Interferon Beta-1a.  Betaseron is similar but it is a little different, Interferon Beta-1b.  I'm no doctor, so I can't explain all the differences, but its different formulation may be one reason for its higher rate of NABs.

Some practical advice:  being in the study, I do both the subq and IM injections.  I will say that the longer IM needle is a little disconcerting, but it is actually not painful at all.

[sllowe]

Did they give you packages on the meds? The Dr offices get them from the pharmaceutical reps. I have them and they have lots of information in those packages to review. Please ask the Dr for them.

This is a hard decision to make on your own. Many on our forum were given the choice themselves too.  We've had many discussions on this too.  I do not believe you could go wrong with any of them.  If you use the "search this community" feature, you will be able to pull them up and start reading.  If I get the time, I will try to do it and copy the links for you.

ttys,
Shell

[risnerrose]

My neuro suggested Rebif or Betaseron . . . Copaxone was not even offered.  How do the two compare?

[risnerrose]

We must have been posting at the same time.  Yes, the neuro gave me packets on the Rebif and Betaseron and urged I do a little research on them; of course, the forum was my first place to turn :)  I am also curious as to how severe the side effects could be.  Will I be able to work?  How quickly after giving my decision will I actually begin the meds?  So many questions!!!!!!!!

Sherry

[sunshine8]

I am newly diagnosed and my Neuro has told me that the choice is mine. He said that he would recommend Avonex, Rebif or Betaseron over Copaxone in my particular case which is the early onset of RRMS.  He said that he would pick Betaseron over the other two and then went on to explain why with a bunch of medical jargon. Ultimately he said the most important thing is to research all of them and pick the one that you think you can tolerate and stay on long term.

The Ms Society has some good web pages that compare the DMD's. Good luck,

[Cosmobirdy]

It is certainly a very individual choice, especially since MS is so different for all of us.  I am fortunate in that my neuro will give me info, and then I always have alot of input.  

When I was diagnosed in Feb. of this year, he recommended Rebif, because he felt it was the strongest of the available DMD's, and wanted to treat me aggressively.  Rebif and Avonex are exactly the same type of interferon, but the dosage and type of injection are what differs.  Avonex is 33 mcg once a week...Rebif is 44 mcg 3 times a week.  (And it's made from Chinese hamster ovary cells - how hysterical is that??) lol!  

I have talked to numerous people on Avonex, and they said that they felt llike they had the flu for a day or two after their injection each week.  For me (and we are all different), Rebif made me feel like I had the flu constantly - it was very difficult.  You never had any time to recover between injections.  According to my neuro, I reacted more severely than many people...it was like having the flu every day, for 8 months straight.  I hung in there, but ultimately it didn't work anyway.

When he recommended the Tysabri, he gave me some info and then let me go home and do my research.  Three weeks later I went back with my questions, closed my eyes, put my faith in God, and said Let's do it". ... :)  I think the more we ask and the more we tell each other all our experiences, both good and bad, it only helps all of us make the most educated, informed choices possible.  If there's any more specific info that you may want to ask, feel free to PM me any time....:)

Rita

[patientx]

Like MS varies from person to person, I think neurologists vary, as well.  I think this applies in how they diagnose MS (I had one neuro tell me it was a clinically isolated syndrome, and another tell me it was definite MS according to the criteria), and in what medicine they prescribe.

So, I would do your own research, and then ask your doctor as many questions as you need.  I would start by asking why he only recommends either Rebif or Betaseron, and not Copaxone or Avonex.  The manufacturers websites are a good place to start research, but I would take some of their information with a grain of salt.  They will cite studies on why their medicine is the best, but I was told that you can design a study to prove anything (this from a nurse who coordinates clinical trials).  Someone suggested the National MS society, and that's also probably a good place to get info.

From my own experience, I never experienced the flu-like side effects, so I can't comment on those.  Copaxone has a little discomfort that after the injection, that feels like a bee sting.  This usually fades after 20 minutes or so.  Other than that, no side effects.  Some people report getting "dents" in their fat tissue after long-term use, a condition called lipoatrophy.  This is supposedly avoided by making sure you rotate injection sites.  Since I've only started the medicine about 2 months ago, I can't comment on this, or on how well it is working (it usually takes a few months to kick in).

Again, I'm no doctor, but I my understanding is that Rebif, Avonex, Betaseron, and Copaxone are pretty much equally effective.  I don't think any studies show conclusively (yet) that one is better than the other. I'm really interested if other people have different information from their doctors.

I didn't get my meds through the pharmacy, but I would think after you make your decision, you would start as soon as you or your pharmacy gets the shipment.  So, it should be pretty quick.

[essdipity]

My neuro apparently has a policy against specific recommendations, leading me to believe that he considers them pretty much equal. Once I proved allergic to Copaxone, I had to choose one of the interferons. I picked Avonex, based on the idea that I'd rather feel sick once a week than 3 times.

The needle issue isn't too bad for me. I just do it, despite a bit of squeamishness, and in a couple of seconds it's over.

One factor that our members should note is that all of the interferons can cause a rise in liver enzymes to beyond 'normal' levels, so blood tests are in order. I just got the word yesterday that all my blood work, including liver enzymes, was great. That's a relief.

I tolerate Avonex very well. Aleve takes care of nearly all of the discomfort, as does sleeping through it. I have to disagree with Jon that Avonex means feeling sick for 24 to 48 hours. It's that way for HIM, and everyone's different.

ess

[risnerrose]

Do Rebif and Betaseron cause the same level of flu-like symptoms?  If so, wouldn't you be "ill" constantly?

[jensequitur]

I think everybody is different in their response to the interferon DMDs (rebif and beta).  Some have a stronger reaction to it than others.  

The best way - in my opinion - is to go for the drug that seems to address the disease.  If your disease is active and progressive, go for the stronger medication - Avonex, Tysabri, or Rebif.  If you have a slower disease course, Betaseron or Copaxone is a better option.  The neuro should be ordering an MRI in a year to check for progression and see whether the drug is working.  That way, you can make an informed decision on what's best for your body.

I opted for Copaxone, thinking that in a year we would do another MRI to check for progression.  I would see whether it was working, and if it wasn't, I would opt for another drug.  But my neuro hasn't suggested anything like that.  So I'm going to have to go in and suggest it myself.  Grrr...  I hate having to be my own neurologist!  

[patientx]

I don't mean to confuse the issue further, but reading through this thread, it seems some doctors are suggesting that the Interferons are a stronger medicine than Copaxone.  Since I got very little guidance from the neuros I saw regarding the different DMDs, I'd be interested in hearing why other people's neurologists are saying some are better than the others.

[Lulu54]

The interferons are a different class of drug than the Copaxone.  In the long run I believe  I remember the studies show no significant difference among all of the DMD's and their ability to slow relapses.  My neuro suggested I choose either Rebif or copaxone, but we also discussed the other DMD's.  

The one important thing about DMD's that needs to be clear is none of them cure the symptoms you may already have.  In my case, my right leg will continue to have foot drop under exertion or exhaustion.  That neuro pathway will not be repaired with any of the drugs on the market today.  All of the DMD's work toward  the future course of our disease and not the past.

Hope this helps,
Lulu

[GrannyJo6]

I was given info on several and made the choice to use Avonex. I figured since I am not squeamish about needles, I could probably handle a once a week injection. It is just part of the routine now and I am one of the lucky ones who doesn't usually have flu like symptoms. My neuro started me off on 1/4 dose the first week, 1/2 the second and then full dose the next week, I think. I don't even remember! I had elevated liver enzymes one time and for awhile had to go to half a dose til they dropped. I've lost a lot of weight since then and liver enzymes are all back within normal. It truly is an individual disease and the choice really does boil down to your neuo's recommendation, your comfort with needles, your dedication level, life style, etc. I am really happy on the Avonex. Once in a blue moon I get a nasty headache, but that is rare. I take 4 Advil an hour or so before hand, make sure it has been out of the fridge for at least an hour and then go to bed! Best wishes for making a decision you can live with!