molly3631
03-01-2009, 08:30 PM
Hello all -
I'm hoping that I can get some advice from some of you out there. I have been taking Avonex since about August. For about 2 months I went through the awful side effects of waking up at night with the chills followed by a high fever, then basically achey, tired and had a headache until Sunday night. It seemed that at the 2 month mark "most" of those awful side effects went away, I would wake up the next day with a slight headache and a little tired, but was able to resume my day, I was really happy, thought I had gotten through the rough part, until recently... The last 5 weeks a lot of the side effects (not quite as extreme) have returned. I have my shot on Friday night, am very conscious all day of avoiding caffeine, drink lots of water, but am waking up with the chills, extremely achey, horrible headache, followed by a high fever (about 103.5), then wake up feeling horrible. This is really starting to take toll on me (and my family) and I've been thinking about switching to Rebif. The idea of 3 shots a week does not thrill me, but if I can get rid of the side effects I'm willing to give it a shot. I'm really tired of loosing my Friday night and Saturday to MS, does anyone else go through this? Is this just something I have to get used to. My neuro says he will do whatever I want. I just don't want to switch to Rebif and deal with the side effects 3 times a week.
Looking forward to advice!
I'm hoping that I can get some advice from some of you out there. I have been taking Avonex since about August. For about 2 months I went through the awful side effects of waking up at night with the chills followed by a high fever, then basically achey, tired and had a headache until Sunday night. It seemed that at the 2 month mark "most" of those awful side effects went away, I would wake up the next day with a slight headache and a little tired, but was able to resume my day, I was really happy, thought I had gotten through the rough part, until recently... The last 5 weeks a lot of the side effects (not quite as extreme) have returned. I have my shot on Friday night, am very conscious all day of avoiding caffeine, drink lots of water, but am waking up with the chills, extremely achey, horrible headache, followed by a high fever (about 103.5), then wake up feeling horrible. This is really starting to take toll on me (and my family) and I've been thinking about switching to Rebif. The idea of 3 shots a week does not thrill me, but if I can get rid of the side effects I'm willing to give it a shot. I'm really tired of loosing my Friday night and Saturday to MS, does anyone else go through this? Is this just something I have to get used to. My neuro says he will do whatever I want. I just don't want to switch to Rebif and deal with the side effects 3 times a week.
Looking forward to advice!
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jake1297
03-01-2009, 10:03 PM
Hi, thought I'd put my two cents in here. I have been on Avonex for just over a year now. I still have bad nights after my shot where I go through the chills, the aches, and then the sweats. Not every week but most of the time. Also they aren't as severe as they were. I do find I am very tired the following day, so I just plan on hanging around the house taking it easy if I can. They following night I go to bed early and recharge. It never gets rid of my symptoms, so I'm hoping it's doing it's job of slowing the progress. On another note, my sister who is a year older than me (we're both in our 50's) has M.S. also, she took Avonex three years longer than me, but for her the side effects were worse. It got to the point where she would be sick the day after her injection. Her Dr. took her off Avonex to see if it was causing the illness. It went away and she says she feels a lot better not taking it. Just two different cases for what it's worth. What ever you do, talk to your DR.
Carol72
03-01-2009, 10:15 PM
Another one to put her 2 cents in ;)
I am newly diagnosed, and have been on Rebif since 12/08 (going on full dose 8 weeks). From what I understand, I am a rare exception as I have experienced very minimal side effects from Rebif. Also from what I understand, Rebif is easier to tolerate than Avonex. Yes, it is three times a week, but the side effects are less due to the drug remaining in your system at a constant level. As opposed to Avonex where the drug is getting re-introduced into your system again and again once a week.
Also, the needles are much easier to tolerate because they are shorter and thinner...it is injected subcutaneously (into the fat) as opposed to into the muscle.
Just to state again....I do NOT have any experience with taking Avonex, and I have been on Rebif for just a short time. I am just relating stories that I've heard about one versus the other. In the end, it will be your choice whether or not you can tolerate the side effects.
ETA: Just as a sidenote, none of the drugs currently on the market are designed (or able for that matter) to get rid of symptoms...it would be great if they did. It is the hope for all of us taking DMD that they do just that...modify the disease by slowing down progression.
I am newly diagnosed, and have been on Rebif since 12/08 (going on full dose 8 weeks). From what I understand, I am a rare exception as I have experienced very minimal side effects from Rebif. Also from what I understand, Rebif is easier to tolerate than Avonex. Yes, it is three times a week, but the side effects are less due to the drug remaining in your system at a constant level. As opposed to Avonex where the drug is getting re-introduced into your system again and again once a week.
Also, the needles are much easier to tolerate because they are shorter and thinner...it is injected subcutaneously (into the fat) as opposed to into the muscle.
Just to state again....I do NOT have any experience with taking Avonex, and I have been on Rebif for just a short time. I am just relating stories that I've heard about one versus the other. In the end, it will be your choice whether or not you can tolerate the side effects.
ETA: Just as a sidenote, none of the drugs currently on the market are designed (or able for that matter) to get rid of symptoms...it would be great if they did. It is the hope for all of us taking DMD that they do just that...modify the disease by slowing down progression.
MSNik
03-01-2009, 11:19 PM
HI there! Interesting thread. First of all, you are aware that Rebif and Avonex are the identical drug, arent you? Exactly the same! The reason Rebif was brought onto the market is because too many Avonex patients were claiming that by the end of the week, they felt they "needed their shot" - kind of like needing a fix....by introducing Rebif to the DMD family, the same drug, which was already proven to work for MS (Avonex) was now available in a 3 time a week shot, which kept the blood levels more consistent, thus alieviating that "i need my shot" feeling.
Now, the good news is like Carol said- 3 times a week of more consistent blood levels almost guarantees that your body will adapt to the drug twice as fast as it would Avonex....the bad news is, that most of us, myself included, went thru a few months of actually having that sick feeling 3 times a week. For me, it lasted about 4 months HOWEVER its no where near as drastic as the Avonex feeling. For most of us, about 2 hours post shot, we get queasy, sometimes chilled, sometimes flushed...and within 6 hours it is gone. I NEVER woke up feeling bad- never missed a day of work or school (I was juggling both at the same time) due to my shots...and actually, if I took an Ambien or Tylenol PM, I slept thru the worst of it....somwhere around month 4, I realized I no longer needed to premedicate- and now, 3 years later- I can do my Rebif like brushing my teeth- I dont usually premedicate, I absoultely NEVER have a side effect! And, I have traveled half way around the world with it and not thought twice about it...it doesnt have to be refrigerated for up to 30 days- so its really convieient.
Do you want to switch? Its probably worth trying...think of it as "stepping up" your meds..Rebif is stronger, because it is given more often. Its easier, and like Carol also pointed out, less painful- no site injections other then the occasional red mark which fades in 2 days- but no lumps or unsightly bumps, like other DMDs sometimes give...The needle is the smallest on the market- the autoinjector, wonderful for those places which are tough to reach (like the back or inside of your arms) and really- if you already know that you CAN tolerate Avonex without major side effects, then youll tolerate this so much better! Yes, you might have a few bad nights, but chances are, youll be over them within a month...and promise you- they wont last into the next day!
Best of luck to you...tough choice, but Id go for it!
Also, if you dont know, Rebif guarantees no more then 50$ copay with your insurance, or will guarantee the drug by itself for 50$ a month if you dont have insurance.....most people have between 25-50$ a month for the drug.
good luck!
Nikki
Now, the good news is like Carol said- 3 times a week of more consistent blood levels almost guarantees that your body will adapt to the drug twice as fast as it would Avonex....the bad news is, that most of us, myself included, went thru a few months of actually having that sick feeling 3 times a week. For me, it lasted about 4 months HOWEVER its no where near as drastic as the Avonex feeling. For most of us, about 2 hours post shot, we get queasy, sometimes chilled, sometimes flushed...and within 6 hours it is gone. I NEVER woke up feeling bad- never missed a day of work or school (I was juggling both at the same time) due to my shots...and actually, if I took an Ambien or Tylenol PM, I slept thru the worst of it....somwhere around month 4, I realized I no longer needed to premedicate- and now, 3 years later- I can do my Rebif like brushing my teeth- I dont usually premedicate, I absoultely NEVER have a side effect! And, I have traveled half way around the world with it and not thought twice about it...it doesnt have to be refrigerated for up to 30 days- so its really convieient.
Do you want to switch? Its probably worth trying...think of it as "stepping up" your meds..Rebif is stronger, because it is given more often. Its easier, and like Carol also pointed out, less painful- no site injections other then the occasional red mark which fades in 2 days- but no lumps or unsightly bumps, like other DMDs sometimes give...The needle is the smallest on the market- the autoinjector, wonderful for those places which are tough to reach (like the back or inside of your arms) and really- if you already know that you CAN tolerate Avonex without major side effects, then youll tolerate this so much better! Yes, you might have a few bad nights, but chances are, youll be over them within a month...and promise you- they wont last into the next day!
Best of luck to you...tough choice, but Id go for it!
Also, if you dont know, Rebif guarantees no more then 50$ copay with your insurance, or will guarantee the drug by itself for 50$ a month if you dont have insurance.....most people have between 25-50$ a month for the drug.
good luck!
Nikki
Bearygood
03-02-2009, 03:51 PM
I'm admittedly far from an Avonex/Rebif expert but I have never heard this. It is my understanding the difference is actually that Avonex is stronger and because it is injected into the muscle, the medication is released more slowly, thus staying in the body longer whereas with Rebif, more doses are needed because it leaves the system more quickly and isn't as potent.
Molly, following this line of thought, perhaps it's the potency of that one dose that's causing these side effects and for that reason, might be worth seeing how you do on Rebif. Whatever you decide, good luck to you!
Molly, following this line of thought, perhaps it's the potency of that one dose that's causing these side effects and for that reason, might be worth seeing how you do on Rebif. Whatever you decide, good luck to you!
MSNik
03-02-2009, 06:38 PM
Hi again. Sort of right....
Avonex is injected once-weekly directly into muscle tissue (IM), from where it is released slowly into the bloodstream. Since the drug stays in the body longer, you don’t have to inject it as frequently. On the other hand, Rebif is injected subcutaneously, require a frequent dosing, and are thought to remain in the body for a shorter period of time. Therefore, these injections must be given more frequently. The biggest difference is the mcg of drug being injected per week. Rebif winds up being a stronger drug overall. Studies show different resuts on which drug is more effective, depending on which one you read; however 44 mcgs a week given 3 times a week makes Rebif the stronger of the two drugs. Unfortunately, what I said previously holds true. Many patients on Avonex complain of that "needing their shot" feeling by day 5....whereas on Rebif, that doesnt happen. This also explains why patients on Rebif tend to get past the side effects so much faster then Patients on Avonex--- the frequency of dosing helps the body to adjust that much faster.
Hope this helps..
nikki
Avonex is injected once-weekly directly into muscle tissue (IM), from where it is released slowly into the bloodstream. Since the drug stays in the body longer, you don’t have to inject it as frequently. On the other hand, Rebif is injected subcutaneously, require a frequent dosing, and are thought to remain in the body for a shorter period of time. Therefore, these injections must be given more frequently. The biggest difference is the mcg of drug being injected per week. Rebif winds up being a stronger drug overall. Studies show different resuts on which drug is more effective, depending on which one you read; however 44 mcgs a week given 3 times a week makes Rebif the stronger of the two drugs. Unfortunately, what I said previously holds true. Many patients on Avonex complain of that "needing their shot" feeling by day 5....whereas on Rebif, that doesnt happen. This also explains why patients on Rebif tend to get past the side effects so much faster then Patients on Avonex--- the frequency of dosing helps the body to adjust that much faster.
Hope this helps..
nikki