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387113 tn?1313512083

I finally got diagnosed!! Now is it Avonex OR Copaxone?

Hello all you lovely people,

For those of you who know my story, I had another horrible flare and got my first IV solumedrol.  Anyway long story short I saw neuro today to follow up. He said he has no question that its MS and its time to diagnose it. He hesitated in the diagnosis earlier because i wasn't on insurance long enough and they would have gotten suspicious. Now, I've had 2 distinct flares on coverage etc. (4 all together). I have to do the formalative Lupus panel test and as soon as that comes back neg (which he's totally confident it will and so am I) then he'll officially diagnose me w/ MS.  He sent me home with literature on Avonex and Copaxone to read and decide which med I want to start. I am suppose to call him the middle of next week for my lab results and let him know which med I want to start.  I'm thinking of starting Copaxone cuz little to no side effects and its not metabolized through your liver. But, does it slow the progression of the disease like Avonex? Im a full time RN student and working in the ER this summer so I dont want flu like symptoms stopping me and I dont want to damage my liver.  What do you guys think??

Thanks!
cz
19 Responses
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195469 tn?1388322888
Had to add to this thread that I have been on Copaxone for six months.  I just got over a relapse, which lasted about 6-7 weeks.  Obviously I may not have been on Copaxone long enough to see a decrease in relapses yet, but did want to add that this one was shorter by comparison to my other attacks.

When I was on Avonex for three years, I seemed to do much better.  If it weren't for the flu-like side effects that floored THIS lady for 4-5 days, I would be back on it.  I guess I was not one of the lucky ones that got away with lessened side effects over time.  How I wish I could have dealt with the flu side effects.

Heather
Helpful - 0
147426 tn?1317265632
I, too, was aware that Copaxone had not yet been proven to slow accumulation of disability.  But, I also knew that I had not checked on that data for at least six months.  I didn't want to say it if I wasn't up-to-date.  My neuro is not hot on Copaxone, but didn't dwell on the negatives and would have prescribed it.

I also did not know about the 2 day lee-way in the Avonex shot.  So, thanks, Barb!

Quix
Helpful - 0
387113 tn?1313512083
Wow, thanks for such a thorough answer.  I just read an interresting study on Copaxone too. It said that 92%  of pts who started Copaxone and stayed on it  were found to still be walking after 10 yrs. This is hopeful.  It also said that they've discovered how it works too. It shuts on the monocyte's toxic cytotoxin message to the lymphocytes which is what attacks the mylen sheath. In mice it has shown to reverse paralysis. They are looking at expanding the study to include further MS research.  So, that sounds promising!

cz
Helpful - 0
382218 tn?1341181487
I think it is unclear at this point whether Copaxone slows disease progression.  It is something that continues to be analyzed in long-term studies.

Apparently, Copaxone has failed to show an advantage in halting disability progression, comparing subjects on Copaxone vs placebo group.  However they do claim that when they follow up with subjects who dropped out of their studies (those who had previously been on Copaxone but stopped), these individuals are doing worse in disease progression and symptoms compared to those who stayed in the trial and remained on the drug.

It's somewhat confusing.

Teva Pharmaceuticals is not allowed to claim in its marketing of Copaxone that it is indicated for reducing the progression of disability.  It does state that it is indicated for reducing the number of relapses by about 1/3.

I am hopeful that over time, it will be demostrated that Copaxone slows disease progression and disability.  One would think that since it reduces relapses, then the residual damage that accompanies relapses would also be reduced and that somehow this would correlate to slower disease progression and less disability.  However as we know, MS is always doing damage, during and in between relapses.

It would seem that more time is needed before the answer to your question is known.


db


Helpful - 0
387113 tn?1313512083
Thanks Barb, I didn't know there was any fluctuation in time frame for the shot like a day or two.  I figured Avonex wasn't an option for me know because of my work schedule at the ER. I cant ensure I could give it to myself every 7 days. There will be times when I have to work etc so it's good to know

Does copaxon slow the progression of the disease?

cz
Helpful - 0
Avatar universal
Hi,
I just thought I'd tell you that I've been on avonex for 6 years and rarely have flu symptoms.  I always take advil and tylenol and if, after 6 hours I get achy, I just take more.  I gave myself the first shot and then the 2nd time it was horrible.  My husband had to save me by finishing the job and he's given me every shot since.  It hurts sometimes more than others but only as long as it takes him to put the needle in and out.  I never have any residual pain or inflammation from the shot.  I like the idea it's only once a week and I can vary that by two days without hurting anything.  I could have taken copaxone as well and would probably be just as happy.  I'm just so happy that you get to start on something.  Good luck and best wishes.

Barb
Helpful - 0
382218 tn?1341181487
Well it seems you had some time to prepare for this emotionally, and so you're not hit with the shock/denial/horror like some of are, initially. Even still, it's no fun adjusting to the fact that you now know for sure that have a lifelong illness.  You seem to have a great attitude and that will serve you well as you take steps to deal with your health.  

My neuro stated no preference for one DMD over the other.  I wonder why I didn't think to ask him, if he (or his wife or child) were in my shoes, which one would he pick?  I wonder if he would answer that?

Anyway I initially picked Rebif because I didn't like the idea of the IM injections with Avonex (no big deal to a lot of people here); I didn't like the idea of a daily injection with Copaxone; so 3x week, sub-q seemed like a happy medium.  None of them seemed to stand out in terms of efficacy; I kept reading and being told that they all reduced relapses by about 1/3 in the patients in their studies.

I have since learned that Rebif, Avonex and Tysabri are the only ones shown in clinical trials to actually delay disability.

In terms of convenience for travelling, both Rebif and Copaxone can stay out at room temp for up to 30 days.

My experience with Rebif was unsuccesssful.  I was only on it for 8 weeks or so when my liver enzymes elevated.  I came off it, my enzymes returned to normal, went back on it and after only one 22mcg shot, my enzymes were up again.  So apparently I am in the 3% or so of people who cannot tolerate interferons.  I am not predisposed to liver issues, other than mild inflammation during a bad case of mono over 20 years ago.  My doc has since told me that this history would have nothing to do with the current problem.  It appears to be a fluke if not some cruel cosmic joke.  I am otherwise very healthy so I was not expecting to have this side effect.

No worries about long term liver damage with the interferons.  You are monitored closely and would be taken off of it, if you ran into the same problem as I did.  

The only time I really experienced flu-like side effects with Rebif was with my very last injection.  I think I was so pre-occupied about my liver issue that I just forgot to take ibuprofen before the shot.  I felt mildly unwell; nauseaous and achy.  Thought I was coming down with the flu, then realized I had forgotten my Advil, pre-injection.  So I took some and felt better pretty quick after that.

I started Copaxone yesterday, you may have seen my post about this.  The injection did hurt, whereas the Rebif injections did not.  I have been reassured by my fellow forum members that this ought to get better with time.  It's not that big of a deal really.  The needle itself does not hurt, it was the sting of the medicine.  I hope to be able to tolerate it long term and of course hoping that it does me some good.

If you do choose Copaxone, it is reassuring to know that since it is not filtered through the liver like the interferons, you can enjoy a glass of red wine and not worry about the effect on your liver.

The nurse at Shared Solutions told me the most recent study followed patients for 10 years and found that on average, they had one relapse in five years.  She couldn't name the study and said she would get back to me on that.  While those results are encouraging and I hope pretty accurate, I  realize one needs to take them with a grain of salt.  Those stats wouldn't include the patients that had to drop out of the study due to intolerance of the med, or those who worsened and went on to more aggressive treatment, etc.

Good luck in your decision. I believe that the main thing is to find one you can tolerate physically, and that fits best into your lifestyle, so that you can stick with it long term to get the maximum benefit from it.

db
Helpful - 0
Avatar universal
My daugther was diagnosed in December.  We talked in length wiht her neuro doctor, and chose Avanoex.  Several reasons; she did not want to take multiple shots in one week less chances of injection reaction.  She did have the flu like symptons at first, but we minmized them by using advil.  Also we did progressive dosage.  She did not go full strength at first. Recently we changed to using Aleve instead of Advil and she has not had the flu symptons.  When she did have them it began about 4 hours after she took the medicine and it lasted abotu 2 hours.  Hot baths and heating pads helped.  But she is now able to take them and not be wiped out the next day.  I am like you the relief of knowing what was going on and having a name.  We too are scared of the future, but hopefully with early diagnosis and medication we can prevent the long term effects.

Hope you make the best decison for you and your family

mamabeam
Helpful - 0
Avatar universal
I am glad you have a diagnosis and hope that now your life will become more easy becaues you know what you are dealing with.  Good Luck with the nursing stuff.  
Tahiri
Helpful - 0
220917 tn?1309784481
Hey~

Sorry it took me so long to respond....I've been getting on my Big Boots to kick your a** out of LimboLand!  Good Riddance!!!

Good for you!!!!  And, sad for you...  But, mostly relief, I imagine.  I'm so pleased that you finally have the answer we've been thinking for so long.

Wish I could add more about the drug choice.  Good luck with that, cz.

Feel well, and brace yourself!

High five!

Zilla*
Helpful - 0
387113 tn?1313512083
I started w/ Optic Neuritis. then it went to right leg weakness, pins and needles and heavyness up to my mid thigh. Then the it developed eventually into: right leg involvement, right arm/hand weak, heavy, pins and needles adn right hand went numb this last time. I have llermettes (zapping my back if I flex my neck forward) voice tremors, the MS hug, bladder urgency and bowel constipation w/ flares. I have constant muscle fasculations now... (twitching of muscles) on my right side.  Things calms down in between flares but if I get hot, its aweful! Tons of symptoms come back if I get over heated.

The meds are very expensive but there are patient assistance programs.  I was told that it will cost abotu $1200.00 a mo. Insurance will probly pay 80% then Patient assistance will help with some then I'll pay the rest. I dont know what I'll have to pay yet.

Hope that helps....

cz
Helpful - 0
Avatar universal
What were your symptoms? I think I have MS but no dx yet - working on the insurance since I am medically record-wise - clean - so to speak. I too worry about getting coverage and then showing up with this medical issue or pursuing it.

Are the shots expensive, my friend who is a diabetic and has arthritis - her meds cost over $1,000 per month and if she didn't have insurance - she'd be sorry out of luck.

Mercy
Helpful - 0
387113 tn?1313512083
You guys are all so awesome :).  I am so torn between the two.... My husband is all over the giving me the Avonex shot. "I can do it hunny!" he said.  He's so cute but maybe he just wants to give me a good stab now and then.... LOL.  I dont think Avonex will work with my ER schedule this summer.  I can't stick to every 7 days without it falling on a work day so I guess it better be Copaxone.  And like a another said here, if it doesn't work, I can change to Avonex later.

As far as how I'm handling it now thats its "official," I think I'm doing well.  I knew it was MS but couldnt give it a name quite yet.  Now I have a name and that somehow feels better.  It is so scary to think of what may happen to me though.  I took care of a patient a few weeks ago that had end stage MS.  Wow, is that hard to see.  Then I volunteered at a MS walk as a student nurse.  I saw so many that walked like I walk when I have  a flare (that spastic leg thing) and it scared me.  Its like looking into your "possible future" and not liking what you see.  So, I will just fight hard not to be one. I will strive to maintain my independence and health..... what else can I do.  I will succeed!  

Thank you guys so much for being here. Thank you Quix for your straight talk!  You are such an asset to this MS team! Thank you for welcoming me to the winning team you all are!

cz
Helpful - 0
198419 tn?1360242356
Hey Cz,

Wishing you confidence with your decision.  So very hard.  I don't think you can go wrong as long as you and your Doc are taking the steps to try to modify the disease course.

The Doc indicate a preference with either?  I know they usually don't, but seems a rare few do.

Seems that you are thinking about how each one will affect your current life and work schedule, which is good.  Anything else we can do to help you narrow down your thoughts, please ask.  

ttys,
Shelly



Helpful - 0
147426 tn?1317265632
Welcome to the fold, dear heart.  I knew this was coming, you did too and it was alittle overdo.  But, I am so pleased to hear that your doc was looking out for you on the insurance front.  That is compassion.  

I honestly don't think it matters.  I have heard the same numbers of people happy and unhappy on each drug.  I know that my neuro chose to research Avonex and Tysabri and he prefers Avonex, but he would not have had a problem if I had chosen Copaxone or Rebif.

They all claim to be superior and all have studies showing this that and the other.  After hearing the recent news about Paxil, I'm starting to doubt all Pharm company claims.  This doesn't mean real research.  Just the stuff that comes out of the company.

It takes a little more willpower, I think, to do the deep intramuscular injection of AVonex.  It has to go into the belly of the muscle.  It really ins't any more painful than getting a vaccine, but I still have a momentary pause before I go an inch and a half deep (remember I'm fat.  Skinny types can use the one inch needle).  Then I always have that, "Well, that wasn't so bad!" reaction.  And it is only once a week.

I have never had an injection site reaction.

It's a personal choice and there is no "right" or "wrong."

I am so pleased that you are out of LimboLand.  And I'm not even going to give the disclaimer about the reason.  You KNEW you had it.  We KNEW you had it.  The doc KNEW you had it and now you can move on.  And, yes, it still ***** that you have it.

((((HUG))))

Quix
Helpful - 0
Avatar universal
CZ,

THIS HAS BEEN A ROCKY ROAD TO A PROPER DX, WELCOME TO US MSERS.YOUR NOW OUT OF LIMBO-LAND.

PLEASE TAKE SOME TIME TO ABSORB THE DIAGNOSIS, EVEN THOUGH THE IDEA OF MS WAS THERE, ITS GONNA BE A PROCESS OF UPS AND DOWNS WITH THE DIAGNOSIS.

NOW WITH THE DMD, THEY EFFECT EVERYONE DIFFERENTLY. COPAXONE IS DAILY UNDER THE SKIN, AVONEX IS INJECTED INTO THE MUSCLE.

WITH THE COPAXONE IT DELIVERS A STEADY DAILY STATE OF MEDS.AVONEX IS DONE ONCE A WEEK.

THE DMD ALL COME WITH RISKS AS ANY OTHER MED.WHAT WORKS FOR ONE MAY NOT WORK FOR OTHERS.SITE REACTIONS ARE A POSSIBILITY, FLU-LIKE SYMPTOMS ARE ALSO A POSSIBILITY.

I'M ON REBIF,ITS LIKE AVONEX , BUT IT GOES UNDER  THE SKIN AND ITS 3 DAYS A WEEK. WHEN I STARTED REBIF I STARTED OUT AT 8MCGS AND TIRATED UP TO THE NORMAL DOSAGE.I HAD VERY LITTLE SIDE EFFECTS AS IN FLU-LIKE SYMPTOMS, I HAVE HOWEVER HAD SITE INJECTION SPOTS.

TAKE SOME TIME AND RESEARCH BOTH MEDS AND SEE WHAT SEEMS TO SUIT YOU BEST.

I'M SURE MANY WILL BE BY TO OFFER MORE ADVICE AND EXPERIENCES.

T-LYNN
Helpful - 0
Avatar universal
Hey, cz!  We all know what I mean when I say congrats on getting your diagnosis. Out of the land of limbo at last. Guess we should have some sort of graduation ceremony in cases like yours. I held my own for myself about 6 months ago.

As to Avonex vs. Copaxone--My doc too said just pick. I picked Copaxone because I too didn't want to have flu symptoms, I liked the relative portability without worrying too much about refrigeration, and also the liver issue. However, within several weeks I developed a huge allergic reaction to this. I think the Copaxone people, Shared Solutions, way underplay site reactions to their drug. Nearly everyone here on Copaxone has some site reactions, but mine were just extreme. So I was taken off it. Not saying at all this will happen to you as the odds are big that it won't. But if it does, they will bug you a lot but be of no help otherwise.

So now I'm s'posed to go on Avonex. My neuro said only people already subject to liver symptoms will get them with Avonex, and I guess he knows what he's talking about. I'll just have to put up with the other effects and see how it goes. Maybe I'll get lucky. Quite a few folks here minimize things by pre-medicating with ibuprofen or something like it, and doing the shots before bed. Also, as time goes by the effects generally lessen.

The bottom line is that this is so individual. I don't blame you for leaning towards Copaxone and I hope if you choose that, things go well. But you can always switch, no matter what.

Best of luck,
ess

Helpful - 0
405614 tn?1329144114
Congrats on the diagnosis!  (They aren't always easy to come by).  It will be good to slow the progression when you figure out which med to take.

I'm undiagnosed and have no experience with the meds; so sorry I don't have input on that.  Well, I suppose flu-like symptoms sound a little less threatening than liver damage, if it's a either/or proposition.  

I wish you all the best,

Kathy
Helpful - 0
281565 tn?1295982683
I'm still in limbo land so I have no med advice, but just wanted to say that I'm glad that you finally got an answer. I'm sorry it is MS but at least now you know for certain and can get on with the DMDs. You know that everyone here will jump in to help inform you on the meds so you can make a good decision for yourself.

So are you okay now knowing for sure what it is? I know myself that there would be relief in just knowing but at the same time getting an absolute answer can be difficult. You know that you can always come on here for support when you need to.

Hugs
Moki
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