Copaxone or Rebif?

[Lulu54]

recap: I got an official DX today and now need to make a decision-

Copaxone or Rebif -

I really would like all of you to weigh in and tell me of your experiences before I make my choice ....

thanks for any insight you can give,
Laura

PS I saw the discussion going on about DXs and quick DMDs, but I want something even more specific here.....

[Lulu54]

I am a nitroglycerin carrying member for my angina - told the neuro I would pop those if I experienced chest pain before calling a medic.  I have those tiny bottles all over the house and in my purse, just in case.  He said that would not be a problem.  You haven't felt a headache until you have a nitro one - wow!!!

I'm just figuring I should know what the physical cause for the chest tightness comes from.

Thanks,
Lulu, aka Laura

[Salamander2]

I take triptans for my migraines and they give me a strange, tight feeling.  I'm told it is harmless.  Maybe it is similar with the Copaxone.  Make a quick call to your pharmacist, you could possibly get an answer from them.. Also, the package insert will list contraindications for people who should not take the med.

You are in my thoughts.
Sally

[doublevision1]

From all I've read and heard about that immediate post-injection reaction, I understand that as troubling as it may be, it is benign.  When I started Copaxone I asked the nurse at Shared Solutions about it.  She said they really don't know what causes it, but it does not pose long term complications.  On the package they say that if it does happen, not to continue with further injections until you've notified your physician.  I have been on it for about 3 months now and haven't yet experienced it.  They say it may happen after you've been on it a while, about 10% of pts experience it, and most of them only have this happen once.

I believe there are a few year who have experienced this first hand.  Hopefully they will chime in.

[Lulu54]

just when I think I have committed to copaxone I have one more question - one of my heart sisters asked about the chest pain side effect.  

Does anyone out there know what causes this chest pain with copaxone?  As she pointed out, if it is a vasoconstriction problem, I probably shouldn't mess with it....  any clues?

-

[cjacks]

Laura

PS   If I ever don't do well on the Copax. or my dr.s recommend that I take one of the interferon's , for a good reason , I would not hesitate to do so.  

Jo

[cjacks]

Hi Laura

Wow , you had a big day yesterday.  I'm sorry it turned out to be MS , but your dr. is on the ball and doing a good job for you.

It'll take time for it all to sink in. I was dx.d in July and think I went through the many stages of grief .  I haven't fully come to terms with it yet, I guess it takes awhile.   Just take it easy right now , be really gentle with yourself, do some fun things , eat well and  talk about how and what your feeling .

I chose Copaxone because of the NO side effects. I had taken interferon twice for a year each time , for a different illness and had lots of side effects ; flu like , something about blood count ( sorry I can't remember )  I lost lots of hair , depression and anger . It was a different type of interferon but I do not want anything to do with it if I have a choice.  

Another reason I choose the Copax. was because my neuro and MS specialist and PCP all liked it for me. ( The specialist said a majority of his patients are on it )   I've been on it for three months and no problems other than injection sight reactions which are very minimal. The needles are small and the syringes are prefilled. Its pretty easy and just part of my daily routine now.

Good luck , if you ever want to talk , just call ...     aahhmmm   PM me  :) :)  

Hugs and prayers

Jo

[sllowe]

Hi Laura,

Well lady, how are you feeling about this? Overwhelmed yet, or just knew it was coming? I agree with what was said about learning a little about the meds 1st, but then even after you learn, if you are like most, you'll still not know what one to choose.

As mentioned the interferons are given SQ or IM.  Sub Q for Rebif, and Intermuscular for Avonex.  Not sure why he did not offer you Avonex, but if you feel strongly about it, it's worth asking about, as it is an interferon, but given only 1x per week.  

There are some really good posts about this in the past that I will bump up for you, or post the links here. We've talked about it alot and I've asked for specifics too and got them. So I'll tell you a little about my choice.

From my research I was going to choose Copax.  But then, I second guessed myself as it was all so new to me, so I asked my doctor what he would put me on if I had no preference.  He said Rebif.  So, Rebif it was for me.

The needle is small and super thin, did not hurt much.  Injection site reactions were minimal, but discolored a bit.  I got the flu-like symptoms and after a couple months, they minimized bigtime.  The only spot I did not do was arms, as that did hurt.  So, I rotated like they say to, but left arms out of the equation.  As in the post brough up about starting meds quickly so soon after dx is that it may be difficult to distinguish between MS symptoms and Med side effects.  

So, my only caution is to look back on what you have been experiencing MS wise, make sure you've got it written down, so that way if you track your symptoms after DMDs, you may find it a bit easier to distinguish between them. I think those who suffer w/MS for years and no dx absolutely know the difference.  My issues with MS were not going on for years, and my problems started from the attack 1st an go on from there, if I'm making any sense this a.m....lol

I'll go search for those discussions now...
Sending you peace and hugs during your decisions....
-Shell

[Deb61]

I chose Copaxone after looking at the potential side effects and the monitoring for those side effects.  Be sure to look closely at the tiny print of the literature that comes with the medicines' packages that the doc gave you or go online to do so.  

One of the problems with Rebif was that you needed periodic monitoring of your liver enzymes, etc.  With Copaxone, you don't--this is a big issue with me because I live two hours away from my doctor.  

Another thing mentioned is that it may effect the thyroid--another huge issue since I have hypothyroidism which when messed up, really causes problems.  Rebif may effect the thyroid.  

It is true that with Copaxone, you have shots daily.  For some people, it causes issues with.  For me, I've had very few problems with this.  I've had 2-3 post injection reactions since I've started the medicine in Feb/March which were not nearly as bad as the literature stated that they would be like (at least for me).  They were quite minor and went away within 5-10 minutes.  I know for others, though, that this is a big deal, so I don't want to down-play this.

My sister, had been on Rebif for about a year before switching to Tysabri.  It took her several months before she didn't have flu-like side effects.  She still complained of headaches, however, right before she quit the medicine (which decreased when she stopped taking it).  She also developed what the neuro thought as an allergic reaction to her medicine and had to stop (an all-over, ugly, painful, itchy rash).  

So, knowing what I know now and with my own personal experiences, I would hands-down choose Copaxone again.  

Hopefully, I won't be changing my tune after my MRI scheduled for October/November.  I hope that there's been improvement!

I hope I didn't muddy things up for you--I know how hard of a decision this is.

Deb

[JENNIEO]

I chose copaxone for a couple of reasons.  The first was the claim that it did not have the side effects of Rebif, namely the depression (I really wanted to avoid that one!), fatigue and flue symptoms. That was my main thinking - my choices were Copaxone adn Rebif as well - brought both 'kits' home from my dx appt. I did go through both kits, read all the material and watch both dvds.  I also went online to gather more info.  In the end the depression scared me most - and once I decided on Copaxone I contacted my sister in law who has been on dmds for 5 years.  I never knew which one, but knew she was holding her own.  Turned out she has been on Copaxone all this time.  That gave me a good feeling about what I had already decided.  Good luck with your decision and the subsequent injections.  I can tell you that the shots don't bother me much more than a bug bite - no other side effects after a month of being on it.  Think positive and know that we are all pulling for you!

Peace-
Jennie

[Salamander2]

Well,  I don't know if I should say I'm sorry for you or congratulate you.  The fact is, you've known all along, but finally the doc has caught up.

Copaxone is the med my friend takes, she has tolerated it well and though she's not much better, she is certainly no worse.

Blessings,
Sally

[Lulu54]

DV- Thanks for the thoughful response.  Actually my neuro did indicate a preference for me and it was the same one I thought I would prefer too.  I'm intentionally not mentioning it here, wanting everyone's honest opinion before I make up my mind.  the one trial I do qualify for is the other drug, the one I wouldn't have chosen.  

Thanks again,
Laura

[doublevision1]

ps:  My neuro & GP did not indicate a particular preference for any of the DMD's.  I was given all  the info packs & pretty much made my decision on my own.  Of course had I known then what I know now, I would have gone with Copaxone from day one.  Unfortunately there is no way to predict who is at risk for elevated liver enzymes when on interferon, however there is research happening in this area which would sure add some valuable info to the decision making process.

[doublevision1]

Well, I am so sorry you must officially join the ranks but I understand the peace of mind that a diagnosis brings.  

I was dx'ed last fall & started Rebif this past Feb.  The injections didn't hurt & I had no site reactions, & I liked that I only had to inject 3x per week.  Was on it for 8 weeks when my liver enzymes elevated.  This is listed as a side effect but not many users actually experience this.  I had no history of liver problems.   I took a break for several weeks, my enzymes returned to normal, & I tried again.  After only 1 injection my enzymes shot up again so I stopped the drug in June & immediately started Copaxone.  

On Copxone for 3 months now & doing fine.  Too soon to say if it's helping my MS but at least I am tolerating it with minimal side effects.  For the first few wks, I had nasty site reactions- welts, bruising, hard lumps, & painful injections.  But that's all history now & I usually can't even pinpoint my injection site within a day or so.  Keeping a journal of your shots & rotating sites regularly is important.  Over time, lipoatrophy is a potential side effect.  Injecting daily is not nearly as big of a deal as I thought it would be.  It's just part of the bedtime routine now.  Sometimes I use the auto-injector and sometimes I just do them manually.  My husband does my arms for me.

Copaxone is a little cheaper here than Rebif - about $1350 CAD as opposed to about $1600, but thanks to a good employer drug plan which pays 90%, plus a universal health care system which tops up the other 10%, I have no co-pay, just a low monthly insurance premium, half of which is paid by my employer.  I do not know the costs of these drugs in the U.S. but I recall someone commenting about how the cost varies wildly from state to state.  Generally I believe that Copaxone is the cheaper one.

The effectiveness in reducing relapses is about the same for the interferons & glatiramir acetate.  I found the reps from both companies, both located in Montreal, were easy to deal with, & prompt in sending my packages.

What gave me some peace of mind when I originally grappled with this decision is that if the one you decide does not work out for you, you can always try the other.  And so I did.

Good luck with your decision. I'm sure many others here will share their experiences with you.  As the news of your diagnosis settles in, you know where to come if you feel your emotions running amuck.

Peace,
db

[Lulu54]

you're right about thinking this through thoroughly - avonex was not one of the drugs he talked about.  I wonder why? hmmm......

thanks,
Laura

[Lulu54]

Funny - the neuro gave us the dvd kits on the drugs and told us to go home and pour a glass of wine and watch them! :-)

Cab or merlot is definitely my husband's favorites - I'm a beer girl myself but had to pretty much give that up with my HA.

[ShadowsSister]

I am so sorry I can't be of any help here. By the time these new drugs were available, I wasn't a candidate to take them. They weren't approved for CPMS... and still aren't in my case... But I am so Happy that you are a Good Candidate for these new drugs, I know you will do a throughal investigation and make the right decision FOR YOU...
Even though this was difficult being told you have MS, it's much better than not being Diagnosed and not getting the treatments you need.
I'll be keeping an eye on your post and I'll always be here for you..
PS: I can't help but feel some Prayers were answered today..   :-)
HOTW...DJ

[GrannyJo6]

The diagnosis and choice of meds is a lot to take in all at once! My neuro gave me info on several and had me look them over for a few days. I was able to call in my choice and as soon as the drug arrived at his office, he saw me and took me through the first shot. He also did not want to wait too long! I am taking Avonex for purely selfish reasons! Once a week is much less invasive! I had the choice of Rebif or Copaxone also. I've been doing one shot a week now for about 6 years, so has become just part of my daily life. Take a deep breath, look at your options closely and then make the decision that works best for your life style and needs. Best wishes!

[OperaMBA]

Congrats on the Dx!  Yay.  

Can't help on the meds from, my med of choice is Cabernet!  :-)

Richard
OperaMBA