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Avonex, Betaseron or Rebif?
Hi again. I should have mentioned in my last post that I am new to this forum. It seems like everyone is very kind and wants to help. I would also love to help others as I get more experience with my newly diagnosed MS. Was diagnosed on 2/26/10.
Another question I have is where to best educate myself on what drug to go on? My Neuro is leaning towards Rebif, but I have heard terrible things about it due to side effects. Any thoughts out there on where to read up on it or any experiences you may have had with the drugs?
Thanks so much!!
Another question I have is where to best educate myself on what drug to go on? My Neuro is leaning towards Rebif, but I have heard terrible things about it due to side effects. Any thoughts out there on where to read up on it or any experiences you may have had with the drugs?
Thanks so much!!
Hi there, I was dx a couple of months ago and will be starting Rebif in a couple of weeks. I found in my research that Arnica gel helps with injection site related issues and I found some in the organics section. As for other symptoms I haven't found anything natural that seems helpful so I will be taking acetaminophen. Good luck with your treatment.
Corrie
Corrie
Hi - I'm newly diagnosed :( but I've had MS for 15 years - the MRI showed new lesions now in various locations in the brain and I've had a few clinical attacks. the Dr wants to put me on a DMD - He wants to start me off on a once a week and suggested Rebif but only once a week instead of 3 times a week since he thinks my MS is mild. I appreciate that people are willing to share their experiences with the types of meds offered. I do have a choice of meds though Rebif, Avonex or copaxone - I'm leaning towards Rebif - seems that it doesnt matter which interferon you choose, it acts on the disease the same way. I'm a little nervous about the flu like symptoms that people report - I work full time and wonder how this will affect the daily life. I wonder if there are any natural remedies to take prior to injecting - anyone have any thoughts or is over the counter the way to go?
I've been on Rebif for 6 months.
My neuro prefers either Rebif (3 times per week), or Copaxone (daily).
Rebif & Avonex are essentially the same med, but Rebif is 3x week with a small needle into the fatty tissue; Avonex is weekly with a looong needle into muscle.
Beta is similar to Rebif (slightly different chemical composition), every-other-day injection; I think you have to mix up each shot -- but many are successful on Beta.
I'm thin, and neuro said the daily Copaxone shots would be a problem, likely cause tissue necrosis & site reactions for me. Also the Copax can burn for 1/2 hr or so after injecting.
I couldn't even consider the big Avonex needle!
For me, Rebif isn't too big a deal. Never had the flu-like symptoms (that was my biggest fear); so far, no liver problems.
Biggest issue for me is that I'm thin, and finding enough fat for injection site is a challenge.
I use the auto-injector, set at the next-to-shallowest depth setting (since there's not much fat available).
Only feel discomfort on "thighday" -- and I don't use my arms.
I'm very careful to rotate shot sites, and choose a spot with enough fat (belly & butt are best for me).
On the thigh-days only, I apply Emla ( prescription lidocaine cream) an hour before injecting, which makes it tolerable.
I also take benadryl & Advil before injecting; I warm the spot before & after, and massage gently after to move the meds around into the tissues. I also warm the syringe before injecting.
I always get a painless red spot 2 days after injecting, and the spot can last 2 weeks or more -- but it helps me locate the last injection site, so I don't overuse the spot.
I sometimes can feel a burn (not too bad) when the meds go in for a second or 2, then no further discomfort.
Although it's a bummer to remember the 3x week shots, it's really not that big a deal any more. Better than doing nothing.
Some factors to consider when choosing a med are: history of depression (I've had it, but Rebif hasn't been a problem for me), thyroid issues (I have, and have adjusted the thyroid med since starting Rebif), cardio issues (Copax can cause an unpleasant mimic), and more. My neuro gave me big books (provided by the pharm companies) which were very detailed -- ask your neuro if he has such literature).
The home Rebif nurse has been very helpful.
Good luck with choosing a med -- remember, many folks try more than one before they find the right "fit" for them.
My neuro prefers either Rebif (3 times per week), or Copaxone (daily).
Rebif & Avonex are essentially the same med, but Rebif is 3x week with a small needle into the fatty tissue; Avonex is weekly with a looong needle into muscle.
Beta is similar to Rebif (slightly different chemical composition), every-other-day injection; I think you have to mix up each shot -- but many are successful on Beta.
I'm thin, and neuro said the daily Copaxone shots would be a problem, likely cause tissue necrosis & site reactions for me. Also the Copax can burn for 1/2 hr or so after injecting.
I couldn't even consider the big Avonex needle!
For me, Rebif isn't too big a deal. Never had the flu-like symptoms (that was my biggest fear); so far, no liver problems.
Biggest issue for me is that I'm thin, and finding enough fat for injection site is a challenge.
I use the auto-injector, set at the next-to-shallowest depth setting (since there's not much fat available).
Only feel discomfort on "thighday" -- and I don't use my arms.
I'm very careful to rotate shot sites, and choose a spot with enough fat (belly & butt are best for me).
On the thigh-days only, I apply Emla ( prescription lidocaine cream) an hour before injecting, which makes it tolerable.
I also take benadryl & Advil before injecting; I warm the spot before & after, and massage gently after to move the meds around into the tissues. I also warm the syringe before injecting.
I always get a painless red spot 2 days after injecting, and the spot can last 2 weeks or more -- but it helps me locate the last injection site, so I don't overuse the spot.
I sometimes can feel a burn (not too bad) when the meds go in for a second or 2, then no further discomfort.
Although it's a bummer to remember the 3x week shots, it's really not that big a deal any more. Better than doing nothing.
Some factors to consider when choosing a med are: history of depression (I've had it, but Rebif hasn't been a problem for me), thyroid issues (I have, and have adjusted the thyroid med since starting Rebif), cardio issues (Copax can cause an unpleasant mimic), and more. My neuro gave me big books (provided by the pharm companies) which were very detailed -- ask your neuro if he has such literature).
The home Rebif nurse has been very helpful.
Good luck with choosing a med -- remember, many folks try more than one before they find the right "fit" for them.
Thank you all for your support and sharing your experience! I meet with my Dr. tomorrow to discuss which treatment to use. After reading clinical study's and reading other forums, I have narrowed it down to Rebif or Betaseron due to the strength of the meds. My Neuro is leaning towards Rebif for me. I just need a thorough explanation as to why. My last two meetings with him where with me laying on the floor because I couldn't sit down due to lumbar puncture headaches! I will keep you all posted.
Thanks again and God Bless you all!
Jordan
Thanks again and God Bless you all!
Jordan
I'm also a Rebif user by now (only third week so far), I'll just tell you how it went for me:
I was started on Avonex, but, after the first injection (with 1/2 dose) i got terrible depressive "attacks" with massive suicidal thoughts several times a day. This shouldn't scare you off it though, as I have been suffering from longstanding major depression, so that definitely wouldn't necessarily happen to you.
After this debacle, my doctor started me on Rebif. I got the advice from a nurse to start on 1/4 dose the first week, then 1/2 dose the week after etc. until the full dose is reached. I was terrified I'd get depressed again-- but, although on 3/4 dose by now, I didn't!
As to the flu-like symptoms, the first week they were pretty strong (felt feverish and weak and totally stuffed the following day), but these symptoms appear to have receded already, I take 2 paracetamol before the shot and last time (yesterday, 3/4 dose number 2), i didn't notice anything!
I noticed the needle is really thin, too and not very long either, so I'm absolutely fine to inject myself 3 times a week. I chose Monday, Wednesday and Friday and then have the weekend "off" which is great.
My neuro told me that everyone just really has to try out what works for them, it's just not predictable how any individual person will react to a specific DMD.
I'm wishing you all the best for finding the DMD that suits you best soon and, most of all, of course, that it will work for you!
Take care,
Rike
I was started on Avonex, but, after the first injection (with 1/2 dose) i got terrible depressive "attacks" with massive suicidal thoughts several times a day. This shouldn't scare you off it though, as I have been suffering from longstanding major depression, so that definitely wouldn't necessarily happen to you.
After this debacle, my doctor started me on Rebif. I got the advice from a nurse to start on 1/4 dose the first week, then 1/2 dose the week after etc. until the full dose is reached. I was terrified I'd get depressed again-- but, although on 3/4 dose by now, I didn't!
As to the flu-like symptoms, the first week they were pretty strong (felt feverish and weak and totally stuffed the following day), but these symptoms appear to have receded already, I take 2 paracetamol before the shot and last time (yesterday, 3/4 dose number 2), i didn't notice anything!
I noticed the needle is really thin, too and not very long either, so I'm absolutely fine to inject myself 3 times a week. I chose Monday, Wednesday and Friday and then have the weekend "off" which is great.
My neuro told me that everyone just really has to try out what works for them, it's just not predictable how any individual person will react to a specific DMD.
I'm wishing you all the best for finding the DMD that suits you best soon and, most of all, of course, that it will work for you!
Take care,
Rike
I should have added that I am a copaxone user - have been on it for over 18 months with no problems and my one-year followup MRI shows no new lesions. :-)
Hi there,
You've received such good advice, I just wanted to say hello and mention that I'm a fellow Rebif user and give you some of my experiences.
I really don't experience influenza'ish side affects. They are generally mild aches which do minimize a few months in. I have had headaches on and off. For me, there is really not a pattern of... take a shot and feel fluish, repeat everyother day misery. Initial symptoms did fade. The flu is sooo much worse.
Like mentioned, you really can't make a "wrong" choice, and just making one will give you peace of mind. I discounted good advice from the Dr. years back when told to consider injection schedules. i.e, Once a week, vs. 3 a week, or daily. I was convinced at the time it mattered more to pick the "right" med - boy was I wrong. I know so much more now..
Injection schedule is so important because if you hate it, you will not do it - period. If you are not an everydayer medicine taker then pick one of the others. Once a week is looking very appealing to me 3 yrs in to this - but 3 a week is very bearable. So, this is a very personal choice.
All you can do is try one and see how it goes. Think when faced with MS and find that meds are limited, and none of them will cure us, we beat ourselves up trying to pick the right one! In the end at least our choices are comparible. 3 are interferons and one is a peptide. Each have shown to work, but by different mechanism.
Rebif needles are super thin and sharp so you barely feel them. We can talk shots anytime you are ready! I've rambled long enough! sorry :(
Very glad to have you with us - please ask anything,
-Shell
You've received such good advice, I just wanted to say hello and mention that I'm a fellow Rebif user and give you some of my experiences.
I really don't experience influenza'ish side affects. They are generally mild aches which do minimize a few months in. I have had headaches on and off. For me, there is really not a pattern of... take a shot and feel fluish, repeat everyother day misery. Initial symptoms did fade. The flu is sooo much worse.
Like mentioned, you really can't make a "wrong" choice, and just making one will give you peace of mind. I discounted good advice from the Dr. years back when told to consider injection schedules. i.e, Once a week, vs. 3 a week, or daily. I was convinced at the time it mattered more to pick the "right" med - boy was I wrong. I know so much more now..
Injection schedule is so important because if you hate it, you will not do it - period. If you are not an everydayer medicine taker then pick one of the others. Once a week is looking very appealing to me 3 yrs in to this - but 3 a week is very bearable. So, this is a very personal choice.
All you can do is try one and see how it goes. Think when faced with MS and find that meds are limited, and none of them will cure us, we beat ourselves up trying to pick the right one! In the end at least our choices are comparible. 3 are interferons and one is a peptide. Each have shown to work, but by different mechanism.
Rebif needles are super thin and sharp so you barely feel them. We can talk shots anytime you are ready! I've rambled long enough! sorry :(
Very glad to have you with us - please ask anything,
-Shell
Looks like we were diagnose at the same time. I am so sorry to hear you have to experience this. Thank you so much for your response. I am interested to see if there are any Rebif users and what their experience has been.
Thanks again!
Jordan
Thanks again!
Jordan
I was just diagnosed last week and was given the option of which DMD I wanted to be on - I chose Betaseron. The insurance I am on does not carry it anymore and put me on Extavia (which is the same thing with a different name).
I did ask the Nero which one she preffered and she said Avonex because it is just once a week but I didn't want the inter muscular needles (can't stand needles as it is). I didn't want the copaxone because I have recently been hearing too many people having lots of flare ups on it (people I personally know with MS).
Some of the reasons I chose Extavia (Betaseron) - does not need to be refrigerated, only every other day (from readings they often say higher dose closer together is more effective in recently diagnosed MS, my Neuro did agree with this), does not need to be done inter muscular.
I have not started taking them yet because I am still waiting for the nurse to come show me how to inject them. My doctor did say if I don't like Extavia I can change which drug I am on but I would probably still stick to the interferons.
I did ask the Nero which one she preffered and she said Avonex because it is just once a week but I didn't want the inter muscular needles (can't stand needles as it is). I didn't want the copaxone because I have recently been hearing too many people having lots of flare ups on it (people I personally know with MS).
Some of the reasons I chose Extavia (Betaseron) - does not need to be refrigerated, only every other day (from readings they often say higher dose closer together is more effective in recently diagnosed MS, my Neuro did agree with this), does not need to be done inter muscular.
I have not started taking them yet because I am still waiting for the nurse to come show me how to inject them. My doctor did say if I don't like Extavia I can change which drug I am on but I would probably still stick to the interferons.
Thank you so much for your response! I would have to agree with you about the flu symptoms. I will address with my Dr. Thanks again!
Jordan
Jordan
There is no 'right' answer to your question. It's different strokes for different folks.
After I just couldn't tolerate Copaxone, I was told to pick an interferon. I chose Avonex, on the theory that I'd rather have flu symptoms once a week than several times. That has worked out well, as I pre-medicate with Aleve and do the shot at bedtime. I seldom have ill effects.
Also, I think I do better with the deep injections, since I have very sensitive skin. I don't find the needles intimidating at all. They're kind of long but very fine. The shots rarely hurt or cause bleeding.
Good luck to you!
ess
After I just couldn't tolerate Copaxone, I was told to pick an interferon. I chose Avonex, on the theory that I'd rather have flu symptoms once a week than several times. That has worked out well, as I pre-medicate with Aleve and do the shot at bedtime. I seldom have ill effects.
Also, I think I do better with the deep injections, since I have very sensitive skin. I don't find the needles intimidating at all. They're kind of long but very fine. The shots rarely hurt or cause bleeding.
Good luck to you!
ess
Thank you so much for sharing your experience with me Erin, it was helpful! I understand it is a trial and error approach. I just can't imagine being knocked down anymore than I am now. Oh well, have to keep the chin up and battle through it. Can't let it take me over. Talk to you soon!
Jordan
Jordan
Hello and Welcome to the Forum :)
I am currently taking Avonex but I am not a fan. The needles are huge and the side effects knock you on your bum as if you have a wicked 24 hour flu. Can't miss work so you do it on the weekend and there goes have the weekend! I was told that it gets better in time. I have been on it 10 months and now I cry when it's time for the big needle because are the injection areas are so tender. Oh well maybe it's working.
I was on Copaxone for a year and it was great. You had to inject every day but the needles were tiny and other then sore spots after the shot I had no side effects. Unfortunately for me the MRI at one year showed new lesions and the docs took me off of it.
I hope that you find the perfect fit. Remember none of them are pleasant but it shouldn't be terrible either. Ask questions from your doctor as well as here. You should get lots of stories with different opinions which will show you that not all people handle the same DMD well.
Good luck and keep us posted.
Hugs,
Erin :)
I am currently taking Avonex but I am not a fan. The needles are huge and the side effects knock you on your bum as if you have a wicked 24 hour flu. Can't miss work so you do it on the weekend and there goes have the weekend! I was told that it gets better in time. I have been on it 10 months and now I cry when it's time for the big needle because are the injection areas are so tender. Oh well maybe it's working.
I was on Copaxone for a year and it was great. You had to inject every day but the needles were tiny and other then sore spots after the shot I had no side effects. Unfortunately for me the MRI at one year showed new lesions and the docs took me off of it.
I hope that you find the perfect fit. Remember none of them are pleasant but it shouldn't be terrible either. Ask questions from your doctor as well as here. You should get lots of stories with different opinions which will show you that not all people handle the same DMD well.
Good luck and keep us posted.
Hugs,
Erin :)
Hi JRHO, welcome to the forum here. I think you will find this a great community full of very smart MS patients and people in Limbo. I'm so sorry that you join us among the ranks of people with MS.
As for the drug choices, there is a UK site I like to refer new people to for reviewing the choices. It is at
http://www.msdecisions.org.uk
It will step you through all of the drugs, their delivery methods, and the side effects. I hope you will find it useful.
It seems most neuros end up leaving the final choice to the patient - we know that all of the DMD's basically have about the same rate of effectiveness. My neuro says its kind of like a Pepsi-Coke challenge. They are both the same but different and personal preferences play a big part in deciding which one you want.
I hope we will see you around here and remember we are more than happy to answer any and all of your questions. We're here for you.
be well,
Lulu
As for the drug choices, there is a UK site I like to refer new people to for reviewing the choices. It is at
http://www.msdecisions.org.uk
It will step you through all of the drugs, their delivery methods, and the side effects. I hope you will find it useful.
It seems most neuros end up leaving the final choice to the patient - we know that all of the DMD's basically have about the same rate of effectiveness. My neuro says its kind of like a Pepsi-Coke challenge. They are both the same but different and personal preferences play a big part in deciding which one you want.
I hope we will see you around here and remember we are more than happy to answer any and all of your questions. We're here for you.
be well,
Lulu
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