Treatment options...

[NanKozic]

Hi all, I am new to this community, and new to being an MS patient (boo!). I was diagnosed in April and was finally able to see an MS specialist this past monday. Now my task is trying to decide which medication to start on! My doctor recommended Copaxone or Avonex, and I have since read everything I can find on both! I am hoping that some of you out there might share your personal thoughts/experiences with MS treatments!

If anyone has an opinion on which one sucks the least, I would love to hear it! Thanks so much!

[ActiveMSers]

Nan, you may also want to ping the folks over at MS World. They have a popular forum dedicated to treatments. But since you asked, personally I would go with Copaxone. Fewer side effects and no recent study questioning its efficacy. I found it very easy to take after the first month or two....

[NanKozic]

Thanks Dave! I appreciate it!

[staffwalker]

although I started on Rebif, I have been on Copaxone for a few years. The daily injections have been fairly easy to manage. The flu like symptoms side effect on the rebif really troubled me & they are a listed for the other interferon products.

I also have had a number of cognitive problems and have always wished that I had been told about them when I was diagnosed.

my activity is walking and I use a hiking staff and stay close to my house. I do go out in almost all weather conditions & find heat thhe most challenging.

[garyp]

Nankozic:

First of all - good move taking action on decision re: Disease Modifying Drug (DMD) so soon after DX. Science and clinical experience have shown many times that the sooner you start on a DMD the more helpful it will be.

Posting below my input on a similar topic many months ago now - I have had MS for 17 years and have been on all of the DMDs over that period of time. So, sharing my experience with each of them.

==========================

"Are you (or were you) on a DMD? If so, what's it like? Any side effects?"

So, apart from Betaseron, over my 16.5 years with MS have been on all of the DMDs.

Avonex : flu symptoms knocked me out for the day after the weekly injection. Switched to Copaxone after 6 months as was continuing to relapse.

Copaxone : zero side effects. Nada. Very effective for 8 years, then started to feel more tired then a couple of years after that had several relapses in a row including a really bad one in 2008 putting me in the hospital...so then switched to Rebif.

Rebif : no side effects that I noticed. However...was not effective as was still relapsing, so then switched to Tysabri.

Tysabri : no side effects. Extremely effective. However, after 3 years on the drug the JV virus assay result predicted a 1 in 100 risk of PML......decided that was a little too close to home for my comfort level, so switched to Gilenya.

Gilenya : have been on that for about 7 months now. Definite impact on ability to exercise at the beginning (lower max heart rate which had a tendency to wind me more easily) however, as the months go by that has become reduced.

You have to trade off the risk of becoming more disabled more rapidly against the risk of the side effects that each of these drugs provide. The fact is, the risk of disability is greater than the risk of side effects....the sooner you start a DMD (even if things are quiet at the moment) your risk of disability in the future (not now) is reduced. I have had this disease 16.5 years now - I can still play indoor soccer with normal people most of whom do NOT know I have MS or any reason to believe that I do. My EDSS is maybe 1.5 - due to bladder and bowel issues.

Going on a DMD is not an easy choice I know. The day of my first self injection, I could not drive because of vision problems. My 18 month old daughter was with us. My wife was pregnant with our second. A large motivator for me in taking that difficult step that day was to increase the probability that I would be able to run around with my children as they got older, to be able to walk to their high school graduations without assistance.

Enough said on this issue!"

==============================

[MS22]

I have also done most of all of the DMDs.

Copaxone was by far my favorite in terms of no symptoms after the shots. I could continue an active lifestyle and not worry about extra side effects from the drug itself.

Rebif gave me bone marrow failure (rare side effect), renal insufficiency, and decreased liver functions. I felt AWFUL. I couldn't get off of the couch for 3 months.

I am now on Tysabri. We will see how that goes. So far so good, but for a starter drug, I would go with the copaxone. I quite miss it. I just got new lesions on it after a while.

Good luck and good for you to treat now! Keep movin'!

[Niko]

The website Patients Like Me has an extensive forum on various DMDs and their impacts, among other topics.

All I can say otherwise is take your time to really do the research and think about them. There are A LOT of mixed opinions, studies, research and results for any one of them.
I was diagnosed in February but I've chosen not to take the drugs until next year as I need time to research, feel out what's best and learn to live a truly healthy life in all other aspects before adding-on the drugs. And remember that yes the drugs can help, but they are not the only thing to rely on- be sure to live as healthy as you can in other respects too! Trying to do it all at once is too much.

[andreagwolford]

Look for the one having fewer side effects. Copaxone seems so. An extract i found for you about copaxone. It's basically stats based upon Copaxone;

-80 per cent of MS patients are still walking after the 15 years of being on copaxone,without any assistance and the same 80 per cent did not even in any way decline in disability...in fact 51 per cent of these people actually improved during the 15 year study.
-Copaxone reduced the number of lesions in patients by 63 percent, from the number that were detected during the initial dx.
-Copaxone repairs nerve damaged tissue
-Copaxone assists in the reduction of fatigue
-Copaxone has also been noted to assist the body in remylination and improvement in neuroprotectiveness
-Copaxone assists in the reduction of brain volume loss
-Copaxone reduces the number of relapses

There are lot of other stats that are available, but this gives a pretty good picture of what Copaxone can do for u...

[HETA78]

Hi! I just started Copaxone on January 8 (was dx in December). So far, so good. I have zero side effects and the sting after the shot is MUCH less than what I expected after reading other reviews. It's really no big deal. I do not feel the actual needle at all and aside from the ones on my hip, I can self-inject. My husband does the hip ones for me with no problem! Here's hoping it works for me, I'd love to stick with Copaxone (until a cure is found, of course ).

My step-dads sister-in-law has been on Copaxone for over 6 years. I've known her most of my life and had NO idea she had MS, which is very encouraging to me. She said that she has had one minor replase in the past 6 years and her lesions have acutally lessened. I'm going with the theory that this will happen for me too!

GOOD LUCK!!!

[AZgal]

I'm currently taking Avonex without much in the way of side effects. The only one being that it basically turns me into a human popsicle for a few hours. My neuro says that's not a common side effect, but that he has seen it before. I'm thinking in the summer when it's 110 here that might not be such a bad side effect to have.