Im hoping that those who have been dealing with MS longer may be able to help me with some information about the different meds. I have read other posts and learned a little about each one from different comments, but I haven't seen Avonex and Rebif specifically compared...
I had my follow-up with my neuro a few days ago, and the jist of it was that she is "checking the "yes" box" on whether or not I have MS, but she wants a specialist to give a second opinion, which I totally agree with. If the specialist says "yes" as well, I will start treatment immediately. They have given me a choice of Avonex or Rebif and gave me an armfull of literature about each but I feel like since each binder is published by the respective pharmaceutical companies, the info is a little biased.
I would like to know what kinds of experiences any of you have had on either of the meds, and if there really is one that is better for "early stage MS" which is what they say Ive probably got.
Thank you so much for your input, it is much appreciated!
Chris, here is the nutshell version. I wish I could find my posts where I go into this in detail- its allot to re-write, but Ill try to remember everything.
Rebif and Avonex are the exact same drug. Avonex came out first....it was given as a intramuscular injection, once a week. IT worked very wel- however many patients complained that they hated the intramuscular injection and that by the time day 5 came, they felt that they needed another shot- like a fix....so, Rebif was brought out. Its into the skin, NOT the muscle, and its given 3 times a week....no "need a shot" feeling, no real muscle spasms or issues accompany it.
They both have the same exact side effects in the beginning and its been documented that people on Rebif seem to get thru them faster then the people on Avonex, probably because you are getting smaller doses, more frequently. I wont lie to you, the first 5 months on Rebif were not good for me, however Ive never been healthier then I am now, with 2+ years of Rebif under my belt!! The people who post here starting Avonex, can tell you their stories, but Ive only consistently heard that they feel they lose a day of their week each week, the day after shot day. I can honeslty say although the rebif side effects werent fun- I never missed a day of work or school, and they only lasted for 6 hours at a time. In between shots, i was 100%.
Rebif, the needle is the smallest on the market, and also includes an autoinjector, in case you have hard to reach places or issues with needles- it also seems to have the most studies showing the most improvement and least amount of relapses- this is based on several studies which you can locate by reading up on Rebif...
what more can I say? I love Rebif....havent had a single problem since the side effects stopped and really, its no more bother then brushing my teeth...
as for your comment on early stage MS...there isnt early stage. All of these drugs are only approved for Relapsing/ Remitting MS- which is obviously what you have, if the doc thinks that you need to be on a disease modifying drug....if you "caught it early" meaning, you dont have any real problems or permanent disabilities- then consider yourself lucky and get on one of the drugs soon....any prevention of progression is worth it!
let me know if you have any other Rebif questions!~
I'm surprised the neurologist limited you to Avonex or Rebif. There is another option in Copaxone (there's also Betaseron, but I think few people use that nowadays).
Like you, I was given all the literature put out by the drug companies. I walked out of one office with binders full of nice glossy pages touting how great their drugs are, how one is better than another. I read these and did research unitl my head spun. My primary neurologist, the neuro from whom I got a 2nd opinion, and the nurse who runs clinical trials where I got my 2nd opinion, all said that the disease modifying drugs are pretty much equal in efficacy. My primary neuro did say that some studies showed Avonex may be slightly less so, since it's only once a week, so you're getting less medication.
For the record, I got into a study looking at the combination of Copaxone and Avonex. I can't comment too much on the side effects, but I can tell you the intramuscular injection with Avonex isn't as bad as it seems. Seeing the longer needle is a little unnerving compared to the sub-q, but it is pretty much painless going in.
I've been on Avonex since Aug 06'. I never really had horrible side effects not even in the beginning. I give the shot, take 2 advil (some like aleve), then 2 more 4-6 hours later and that's it. Done for a week, until the next shot. There's no site reactions, stinging, burning, etc... It really is painless. As said before, the long needle is nerve racking but you get used to it.
My MS specialist at UCSF stated that he liked to start with Avonex. Mainly because it is less of a burden (once a week) and if it works great. If you need more med, more frequently then he goes to rebif. He leaves rebif as the second option. He also stated that some folks develop an allergic reaction to Rebif after 1-2 years of usage (it's more med than Avonex even though the same drug).
I think either drug is a fine choice. Avonex has worked for me. Rebif has worked great for others. The biggest obstacle is the side effects. When I started out I went into this thinking I was going to be sooo sick, it NEVER happened. I'm one of the lucky ones. Point being, everyone reacts different.
There is also Copaxone and Betaseron (sp?). I can't speak to those drugs, but I would ask why they were not included for your consideration.
Hi Chris. I am on Avonex. The choice was easy for me. I left it to my Neuro and he suggested Avonex because of my fear for needles. Yes they are long but i use the smaller needle. Not tHAT much smaller; but i feel better knowing its once a week and that's it.
I did get the side effects. Flu like symptoms; learnt to take Aleve half hr before my shot. slept through the night. After a few months. I have no side effects at all. The nurse was happy to come to my home every week, till i got used to injecting myself. The alliance nurse can also come out to you. I assume its the same for Avonex and Rebif.
I've been on Rebif for 6 months now. Haven't really had any side effects. I take an advil when I do my shot and sleep. The needle doesn't bother me. I hope you do well with which ever one you pick. THe people here are wonderful and always help with answers and advice. Take care,
I have been on Rebif for two months. I started out at a very small dose and titrated over the course of a month to my current 44mcg level. The first shot I had a reaction but it was just mental, not the shot. I can honestly say that I do not have, or have ever had any side effects from it. I know many people experience flu like symptoms from it, but I am extremely lucky.
Also, I take two Aleve 30 minutes before my shot, which I take at 5:30pm.
Like anxiousme I am also on Avonex. I have been using it for 4 years now and am very happy with the outcome. I too never really experienced major side effects. I have heard some experience flu like symptoms when they first start this medication, but I never did. I found about 4-5 hours after injection I felt a little more fatigue than usual and will kind of use that day as a relax day and not plan anything to strenuous, and I also experienced a bit of a head ache, but nothing some Motrin couldn't help. I would have extra strength Motrin a half hour before injection and then again 4-6 hours later and everything was pretty good. And truthfully these side effects only lasted the first few months or so after starting Avonex. Now, I don't really have any side effects and don't even need to take Motrin with my injection anymore. As for the needle, yes it looks kind of long, but most of the trouble with me was all in my head, the thought of sticking the needle into my muscle was a bit to get use to, but it is fine now. I never experienced any redness or swelling at the injection site. The needle that comes with it is an 1 1/4 inches I believe, but now if you are not too heavy they let you use a 1 inch needle that you can get through the MS Alliance.
When it comes to Avonex, over all, I am very happy with it. In the 4 years that I have been using it, I have had no major relapses and no major changes when it comes to symptoms.
Good luck with your decision. Any decision you make will be the right one for you.
I've been on both of these drugs. I'm currently on Rebif. I miss the convenience and lack of bruising with the Avonex, however, I have no flu-like symptoms with the Rebif and only noticed that I POSSIBLY had a fever in my sleep a couple of times (when I forgot to take a naproxen....). In my case, the only troublesome effects with Rebif are the bruises and "stains" from the injections. Unlike with Copaxone (which I have also been on), my site reactions are NOT "lumpy" and painful.
With Avonex, there was no physical pain with the shot, despite the natural trepidation of stabbing yourself with that big needle! This is because the pain receptors are in the skin and the needle goes right past that very quickly. BUT. I had the flu-like symptoms for at least 2-3 days after every shot. And they were BAD -- fever, chills and chattering teeth. Not fun. I decided that my quality of life was more important than the potential reduction of future disability and got off the meds after a year and a half.
A year later, I started having "flares" so my doc and I decided I should try Copaxone. That lasted less than six months because the site reactions were so bad. Could have just been MY system because so many people have no trouble. So.
Another year-year and a half and I started having trouble again so this time I got on Rebif. I REALLY dislike the sub-Q shots, but since my nurse told me to start "pre-heating" the site, the pain of giving the shot has completely disappeared. It's been 6 months now and I think this one is IT for me. Also, this doc had me start taking vitamin D3 (which I credit for how well I'm doing these days), but I don't plan on "jinxing it" by changing anything I'm doing-- Sometimes I feel like I don't even have MS! ...Yeah, I especially feel guilty when using my handicapped parking placard. However, the lifetime fishing license is a different story! ;-)
Thank you all for your responses and all of the great information, I really appreciate it as I believe that the best way to research something like this is to get information directly from those with personal experience. I have about 2 months before I have to make a decision, but I think I am leaning towards Rebif, mainly due to the needle size... I almost passed out when the nurse put the IV in my hand for the IVSM, so Im thinking that if I have to inject myself it may be best to start with the small needle - and then of course I guess we'll see about the side effects... One other thing I was wondering is if you still take the meds for nerve pain and muscle spasms while on a treatment like Rebif or Avonex? Im sure this is something I should ask my doctor, and I will, but since I thought of it during this post I thought I'd just throw it out there...
Thank you all, and I hope that this finds you having a "good day" (don't we all hope for more of those!)
HI Chris, just to answer your question, Rebif has virtually NO drug contraindications...meaning, you can take anything from Steroids to antibiotics to cough medicine to nerve drugs, pain pills and narcotics on it without a problem.....I have had surgery, been anesthetized (general anesthesia) and also had some serious pain drugs given intervenously for 3 days all the while, doing my shots of Rebif. NOT a problem!!!! Hope this makes you feel better.
ask if you have more questions, its the best way to learn.
Thanks so much Nikki, that does make me feel better - at this point I have to take the nerve pain meds twice a day or else my legs hurt so bad I can barely function so I was reluctant to stop them even if I did start using something like Rebif. Knowing that I can take them if I need them while on the injections is a relief! Thanks again for helping me through this, I am learning a LOT through everyone's posts and it definitely makes things easier as I continue down the diagnosis/treatment road!
no problem Chris, I dont know what nerve pills you are taking (lyrica? Neurontin? Gabapentin?) but anyway, no matter what you are taking, IM willing to bet after being on Rebif for a few weeks, youll stop taking them. For some reason which no one can explain, Rebif seems to help with the spasms that cause the pain. Its not supposed to, but seems to be a good side effect of the drug...anyway, it cant hurt to try it.
I love Rebif...I really do.
When I was diagnosed with Probable MS (never got a "Definite MS"), I was sent home with Avonex and never learned about Rebif or any other meds until much later -- on my own. I was on the Avonex for about a year and a half. There was NO PAIN with the injection (after I quit being so tentative and learned to quickly "dart" the needle so the skin receptors weren't so traumatized) and the site reactions just never happened. That was MY experience. If I hadn't become so needle-phobic, I think I'd still be on it. BUT the "flu-like symptoms" were intense for me. Chills and achy almost EVERY week. YUK!
I went another year with NO meds after I lost my insurance. THEN I tried Copaxone. That was a very BAD experience for me. I had site reactions like crazy and it just got worse longer I was on it. Painful red lumps. That lasted just a few months.
Now I am on Rebif. Since mid-2008. And I really think it's the best choice for me. Flu-like symptoms are almost non-existent because I take an Aleve at the time of the injection... When I forget, I DO wake up in the middle of the night with chills... The site reactions are bad, but not painful like with the Copaxone! Just ugly fading bruises all the time... You think I wear shorts or sleeveless tops in the summer? NO WAY! ...There were NO bruises while I was on the starter dose, but you don't get the choice to STAY on that lower dose. :-/
It seems counterintuitive for such a large amount of Interferon Bete-1a (compared to Avonex) to have such a BETTER result, but there you go!
This has been my experience with these meds. YOU may have an entirely different one.
Wishing you all the best!
I have been on rebif now since may and so far only minor things have happend slight headache just feeling a bit strange sometimes and a few stomach pains.
The main thing is a few hot flush but not much to report its very easy to do.