jayhoward
02-15-2004, 09:04 PM
I'm currently using Avonex, a once a week shot. Recently my doctor said it's not working. Has anyone heard anything about treatment options such as Rebif? Which has the least side affects? Also, personal experience dealing with treatments.
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lbstover
02-16-2004, 08:39 AM
Couple of questions for you,
1. How long have you been on the Avonex?
2. How does the Doctor know it isn't working?
Just curious
Betsy
1. How long have you been on the Avonex?
2. How does the Doctor know it isn't working?
Just curious
Betsy
joshremus
02-16-2004, 09:11 AM
I'm currenly using Rebif and having no major problems. However, it's the only thing I've ever tried, and I've been on it for about 1.5 months. My Doc suggested it because he believes it's the most aggressive. However, he seemed like he would have been fine with any of the choices.
Rebif (if I'm not telling you something you already knew) is the same stuff as Avonex, but delivered under the skin more frequently in higher doses. I would GUESS that if you tolerate Avonex well, you'd be okay with Rebif.
Josh
Rebif (if I'm not telling you something you already knew) is the same stuff as Avonex, but delivered under the skin more frequently in higher doses. I would GUESS that if you tolerate Avonex well, you'd be okay with Rebif.
Josh
jayhoward
02-19-2004, 08:04 PM
1. How long have you been on the Avonex?
3yrs doc says im getting more lesions thinks rebif will help better
2. How does the Doctor know it isn't working?
took an mri last mth says placs r still growing since last mri 2 yrs ago
3yrs doc says im getting more lesions thinks rebif will help better
2. How does the Doctor know it isn't working?
took an mri last mth says placs r still growing since last mri 2 yrs ago
chicken1
02-24-2004, 07:06 AM
maybe it's just because i've been on it with no exacerbations since 1999, but after all the studies i've read, Copaxone is the best choice....check out the NARCOMS study (do a google of that word) ....it's an MS research study that's been comparing drugs, symptons and the like and have been comparing drug choices for over 10 years and have found that copaxone is the best option.
joshremus
02-24-2004, 09:41 AM
maybe it's just because i've been on it with no exacerbations since 1999, but after all the studies i've read, Copaxone is the best choice....check out the NARCOMS study (do a google of that word) ....it's an MS research study that's been comparing drugs, symptons and the like and have been comparing drug choices for over 10 years and have found that copaxone is the best option.
I've heard someone make that same assertion. Can I get a direct page link? Because I haven't been able to find the information you're suggesting.
I've heard someone make that same assertion. Can I get a direct page link? Because I haven't been able to find the information you're suggesting.
chicken1
02-25-2004, 07:42 AM
I've heard someone make that same assertion. Can I get a direct page link? Because I haven't been able to find the information you're suggesting.
the site is www.narcoms.org
it publishes a quarterly report and just put out a new one
the site is www.narcoms.org
it publishes a quarterly report and just put out a new one
BrianMichael
02-25-2004, 09:09 AM
Look at the longest studies you can find about any drug you are considering taking. So many drugs look good ( a matter of perception) in short term studies. checkout ten year studies. I am not impressed with any drug yet. Remember MS hits everybody differently and the progression of this decease is at time frames of which no two are alike. My question is; how can anybody knows if it works? Good luck and remember there are no miracle cures. Enjoy what parts of this life you can.
joshremus
02-25-2004, 09:24 AM
the site is www.narcoms.org
it publishes a quarterly report and just put out a new one
Ok - let's rephrase - I've got the most recent report, and have looked through the archive. Nowhere that I've found says that copaxone is the most effective. I'm very interested in seeing that data if it exists, but I haven't seen it yet.
it publishes a quarterly report and just put out a new one
Ok - let's rephrase - I've got the most recent report, and have looked through the archive. Nowhere that I've found says that copaxone is the most effective. I'm very interested in seeing that data if it exists, but I haven't seen it yet.
Jewel2
02-25-2004, 06:11 PM
Hi,
I think that just as MS affects each individual differently, so do the treatments. I spent quite a bit of time researching the different drugs and I could not find any data to support the assertion that Copaxone is better than the others.
To the contrary I found this information at a MS website:
"The Consensus committee originally agreed that the statistical differences in outcomes among Copaxone, Betaseron, and Avonex clinical trials were not sufficient in themselves to warrant recommending one of the medications over the others. It will take several months, while the specialists review data, before a formal supplementary statement relating to Rebif is added to the recommendation. But the basics of the National MS Society’s Disease Management Consensus Statement are certain to remain: The advantages of the disease-modifying drugs are real. They represent the best available chance to reduce future disability and improve quality of life for many people with MS."
From everything I've read Rebif is showing the most promise as being the most aggressive option, but it is still too soon to know for certain. Whichever drug you choose, the earlier you start it, the better.
Regards,
Julie
I think that just as MS affects each individual differently, so do the treatments. I spent quite a bit of time researching the different drugs and I could not find any data to support the assertion that Copaxone is better than the others.
To the contrary I found this information at a MS website:
"The Consensus committee originally agreed that the statistical differences in outcomes among Copaxone, Betaseron, and Avonex clinical trials were not sufficient in themselves to warrant recommending one of the medications over the others. It will take several months, while the specialists review data, before a formal supplementary statement relating to Rebif is added to the recommendation. But the basics of the National MS Society’s Disease Management Consensus Statement are certain to remain: The advantages of the disease-modifying drugs are real. They represent the best available chance to reduce future disability and improve quality of life for many people with MS."
From everything I've read Rebif is showing the most promise as being the most aggressive option, but it is still too soon to know for certain. Whichever drug you choose, the earlier you start it, the better.
Regards,
Julie
joshremus
02-25-2004, 07:56 PM
That's the same sort of info I've been finding. If somebody can point me directly to some place that comes out and says copaxone is better than the others, then I'll be very interested!
chicken1
02-26-2004, 06:53 AM
julie: i totally agree on the starting treatment ASAP, whichever one you choose. A girl i went to high school with came down with ms around the same time i did...she chose not to go on drug for fear of injections...her battle with ms is relentless. she is currenlty on chemo to supress her immune system....the one thing that got me when i saw her last was her statement that she blamed herself that she didn't start the drugs as early as possible. thing is, that's the screwy thing with sickness...you start blaming yourself for things in your body that go wrong...this is the wrong way to look at things, i know, but you can't help it...i feel that if i didn't begin the drug therapy when i did and i experienced exaccerbations that it would have been my fault...which is awful!!!....it's none of our faults for having this disease, yet not doing anything puts the blame (psychologically) on you...does anyone else feel this way.???..i don't know if it's the copaxone or just my type of ms, but i don't think i could live with myself if i chose to do nothing for fear of needles and experienced an exxacerbation...
joshremus
02-26-2004, 09:00 AM
I agree with that whole-heartedly. It makes me feel a lot better to be doing SOMETHING.
Jewel2
02-26-2004, 11:24 AM
I definitely agree with you, too. It is always a good thing to be pro-active in managing your medical care. There are too many things about MS that are out of your control, but taking the shots are one way to have control about something in your life.
Unfortunately my daughter is unable to take any of the ABCR's. She has tried each one only to have the depression get so bad that she attempted suicide once and landed in the hospital. She was even on an antidepressant at the time. So, unfortunately she is rapidly declining because the MS is running rampant. Her doctor at the Mayo Clinic feels that Novantrone hasn't proven itself safe yet and anyway, it can't be used for too long and my daughter's only 23. We keep praying for another option.
I'm glad that the drugs work for so many MS patients.
Take care,
Julie
Unfortunately my daughter is unable to take any of the ABCR's. She has tried each one only to have the depression get so bad that she attempted suicide once and landed in the hospital. She was even on an antidepressant at the time. So, unfortunately she is rapidly declining because the MS is running rampant. Her doctor at the Mayo Clinic feels that Novantrone hasn't proven itself safe yet and anyway, it can't be used for too long and my daughter's only 23. We keep praying for another option.
I'm glad that the drugs work for so many MS patients.
Take care,
Julie
joshremus
02-26-2004, 04:14 PM
Julie: I think I mentioned something about this on another thread, but has your daughter considered LDN? If anything, it should counter depression somewhat and the people who testify about it on remedyfind sure think it's pretty slick.
Jewel2
02-26-2004, 06:09 PM
I've only recently heard about LDN and passed along the info to my daughter. She is supposed to have a phone consultation with her neuro soon so I will encourage her to ask about it. Thanks for thinking about her!
Julie
Julie
joshremus
02-27-2004, 10:48 AM
No problem - my wife works in a inpatient psych ward, so she was very wary of the potential depression/suicidal side-effects of the stuff I'm on. I feel a little down sometimes (who with MS wouldn't?), but hopefully am not going any further than that any time soon.