Avonex Vs. Rebif
I've finally decided, after more than two years, that I'm going to try some sort of treatment, and my neurologist has asked me to think about either Avonex or Rebif. I was just wanting to know what other people think about each, what experiences they had - good and bad - and anything else they think might help me gain some further insight.
All input would be greatly appreciated.
Cheers.
Disclaimer please read!
Disclaimer please read!
Please Note: Any advice given on OzMS must not be taken as medical advice, it's merely advice given by members from their own experiences of living with Multiple Sclerosis. Always check with your GP or Neurologist or other medical professionals, it's the smart thing to do and only logical! If you have something to contribute please do so, everybody has something to offer.
Comments
Hey Titch I too took my sweet
Hey Titch
I too took my sweet time going onto the meds, about 5.5 years before I took the plunge, lol.
I can only comment on the Rebif, as thats the one I started on. The needle is really fine and with the auto-injector, it is really easy to give yourself a shot, you hardly even feel it.
The down side is the flu-like symptoms which you can usually control with panaodol etc, and in time I believe that they go can away as your body adjusts to it. The other side effect which I am sure your doc would have talked to you about is depression and/or anxiety, which you usually only get if you already suffer from them.
The flu-like symptoms you would get with both of them, so its probably a matter of the 3 times a week injection into the fatty bits, or the weekly intra-muscular injection. I'm not sure how much flu symptoms the Avonex produces... someone should be able to fill you in on that
Good luck with your decision,
Cheers Kristy
Life is like a box of chocolates.... never know what your going to get
Hmmm
I took Rebif for 3 years and managed it with panadol. I didn't ever do Avonex. It's funny. My Neuro only offered me the choice of the 2 as well. I didn't even know there were more than the 2 until I joined OzMS. It turned out my neuro (first) was getting money for every person she put on the drugs as they are both made by the same company.
Ask your neuro what other options there are so you can get a real idea of what is on offer before you make your decision. (sorry I'm a cynic)
Good luck!
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Yes titch I don't think there
Yes titch I don't think there would be any harm in asking about the other treatments, nothing wrong with being informed of all options, of course your Neuro may have reasons for suggesting what he/she has but you should know those reasons as well IMO.
Avonex
Betaferon
Copaxone
Rebif
Tysabri
Multiple Sclerosis Portal | Australian MS Info
definitely worth asking more questions when it comes to this :)
I'm agreeing with definitely worth having a chat to your Neuro about the other drugs they missed on informing you of (or offering).
I started out on copaxone, it sounded like the one with the least side effects, but for me it was 3 to 4 months of of side effects which were all initially put down to skin issues, and they just werent in the end, copaxone didn't like me and the everyday injections are not fun
I know my neurologist was pretty against Avonex and Tsyabri,he wasn't comfortable with the dosing of Avonex (can't remember which way whether it was too high or low and I think because its the one you inject into your muscle and not just under your skin(yeah the muscle part put me off the most)) whicth left me with the choices of rebif and betaferon when I had to go back on new DMD's.
I'm on betaferon, and have been since june last year, as for whether it is actually helping keep me relapse free, well it lasted about 5 months longer between attacks, my priorty on my last visit to the neoro just last week was one of those this is a new sympton kinds of visit. (now on roids and betaferon simultanously as to why a relapse now, I think I'd have to find an oracle in the center of the earth for that answer)
In terms of side effects I still firmly clutch the paracetomol teddy bear (coz I'm a wuss), because I hate waking up feeling flu like, and depending on injection sites I'm surviving ok I think. The panadol may actually be a mental bandaid now I don't actually know if I'd get cold and flu like symptons always I know I got them sometimes, either way I like my sleep solid and uninterupted.
Everyone elses experience does can make a decision,(it might sound really terrible but I read a few peoples public blogs on their experiences all over the web too) But everyone is so very very different when it comes to what will be ok for them, something that influenced my decision in the end was the information available to look at.
The more information I was offered the more I felt like an effort was made to inform people what the drugs were doing (whether that is the case or not I don't know)
After coming off copaxone, which had the most initial descriptions (which is why i picked it), I actually really wanted to see more of what the actual injections looked like and at the time I couldn't (not enough online videos or even pictures on the drug sites) , so I picked betaferon because it atleast had more info.
I was amused throuroughly when I was presented with the space ship in which you inject it with, and even more amused when i realised I got to play at home chemist to inject the stuff. My mind says it looks much more inviting than the old autoeject.
Making humor out of it is a way i cope
besides when i read what the active ingredients were I was in hysterics(well before I ended up on them whilst going through the copaxone book with the what active ingredients were), and no one ever beleived me that it was for real until i showed them. then add into a big bright blue and orange spring loaded thing that sounds like a toaster when its done.
and no I am not always so enthusiastic every time I have to inject, sometimes I stomp around my house profusely at injection time in rebellion.
Overall I think I'm better off on betaferon, and if that fails and I can't do trials then I just have to go naked or onto rebif.
anyway the moral of the story is its worth a chat to the neuro about why youve only been given 2 choices, and an MS nurse to get you out all the information so you can make that decision on your own terms too.
All the best Titch
Hey Titch, Everyone here is
Hey Titch,
Everyone here is giving you great advise about asking for info on the others, as one drug will work great for one person, with no or minor side effects, and another one will be terrible for them (like MissCrytty, with Copaxone, which is supposed to have the least side effects, and she had bad ones), so the more informed you are, the better ale to make a decision.
But the main thing to keep in mind is that once you make your decision.... its not a life-long choice... you try it for a few months, and if you cant handle the effects... you ask your neuro to prescribe another..... I tried Rebif, hated it, so asked my neuro to put me on copaxone, and "love it" (as much as you can love jabbing yourself
)....ultimately the choice is yours, you may try them all before you find one that agree's with you, or you may get the right one first up... but you are in control, not the neuro's, its your body, your life, therefore your decision.... Best of luck with it 
Life is like a box of chocolates.... never know what your going to get
DMD's
Hi Titch,
As far as you choice is concerned. You've been given two options.
But, if your MS is not active - there are 4 possibilities:
Avonex interferon 1a - intramuscular injection 1 per week
Rebif interferon 1a - under the skin injection every second day
Betaseron aka Betaferon - interferon 1b - under the skin injection every second day
Copaxone - amino acids - under the skin injection - daily
There seems to be a wide range of reactions to these drugs between individuals. See the portal at the top for the old MS site and you will see lengthy posts about each drug.
Do they work - if they work for you then the range of relapse rates between all of them is pretty much the same.
I don't take either of the drugs mentioned so I cannot comment, other than to say that the data for effectiveness is much the same.
I have been on Copaxone for 6 years and other than injection site effects, I have experienced no other nasty side effects. It has been good to me, and I have not had a relapse for two and a half years.
You may just have to do the reading and pick one, with your neuro's guidance, if it doesn't work ie you relapse, or you cannot tolerate it you'll soon know, and you could try something else. Generally speaking the usual switch is between the interferons and copaxone - the rationale being that if you have a problem tolerating one interferon the switch will be to copaxone and vice versa.
Do the homework, it is a decision not to take lightly because you may be on them for a while.
In the end it is your decision, or should I say the best informed decision you can make.
all the best,
Helen.
Hey guys, Thanks for the
Hey guys,
Thanks for the advice so far. I just wanted to clear up the "only two choices" idea, because I obviously didn't go into too much detail before.
I have been told about all the possible options, and I have spent the past two years researching and studying any information I could get my hands on. My neurologist and I both agree that there is no way that I'm going to be jabbing myself every day. And I'm not really too keen on three times a week either. I don't have an issue with needles - as long as someone else who knows what they're doing is putting it in me. I'm also very busy during the week, with Friday, Saturday and Sunday being my downtime. So I guess in theory, the Avonex makes sense.
Throw into the mix the fact that I've only had two episodes, two years apart (pretty much to the day), I have the worst case of migraines any of my doctors have seen, and I have what a doctor would probably consider to be depressional tendencies (although I've never given them reason to suspect it), perhaps I was onto a good thing when I took a stand against medication and decided I'd go on living my life the "natural way"... I think my exact words were "If it's going to happen, then so be it".
Either way, I have three months before I go back and see him, during which time I'll be getting a second opinion from my GP, who is somewhat of an MS specialist. So more personal experiences would be great! Because all I've found outside of here is "testimonials" which I don't plan on taking into account.
Cheers,
titch.
PS. MissCrytty, your sense of humour definitely brightened up an otherwise cloudy day - Thank you!
The jab and depression
Hi Titch,
Re the jab, said needle for me is put into an autoinjector, as is available for all the skin injector drugs. I don't do it myself because that would freak me out. So I pop it into the autoinject and push a button.
Secondly, my neuro advised me to go on Copaxone because I presented with depression. Hopefully you neuro has told you that the interferons are a risk for depression because they can exacerbate it. Do the reading on the links to interferons and depression.
A simple google search will reveal, e.g. "Avonex should be used with caution in people with depression".
Helen.
Hey Titch, Thats good that
Hey Titch,
Thats good that you have researched yourself
knowledge is power!
Ok, personal experience...
I dont suffer depression or anxiety, have never had a depressive day in my life, have never suffered anxiety (apart from the normal anxiety that comes from having 5 children to worry about for the next 20years) so the interferons (Rebif) were 'perfect' for me....
However, I developed anxiety, couldnt sleep, would wake up 'worrying' that I had had a relapse, things that went bump in the night woke me when normally they wouldnt.
My symptoms became worse, I put this down to the 'flu-like' side-effect raising my body temp, as anytime I get a flu, my balance gets worse normally.
So that was my experience on Rebif (you did ask for good and bad, but keep in mind that everyone is different, and most people wouldnt suffer the anxiety if they arent prone to it). Thats why I changed to copaxone, as all the interferons would probably do the same with anxiety my neuro said.
Good luck with the decision
Life is like a box of chocolates.... never know what your going to get