Switching from Beta-Seron to Avonex

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katherineweed
New Member


Date Joined Jul 2006
Total Posts : 5
   Posted 7/14/2006 11:19 AM (GMT -6)   
My mother has had MS for 25 years. Over the last 6 years, she has been using Beta-Seron, among other depression meds, meds for her bladder, meds for sleep, meds for energy, etc. She can still walk on her own, even though she looks drunk as she walks :-). She's been hospitalized 3 times in the course of her MS for steroid treatment and has used oral steroids through the years duing exacerbations. She has been very lucky and very blessed that she does not have super "busy" MS. Recently she has started shaking more and lost more of her balance. Her walking over the past year has severely diminished. Her youngest brother was just diagnosed with MS yesterday and is going to start Avonex. What would your thoughts be on having her switch from Beta-Seron to Avonex now, after having been on Beta-Seron for 6 years. She is just now starting to get worse.....and don't even know if the switch would help. Any advice on this issue would be greatly appreciated. I don't want to steer her in the wrong direction. THANKS!!!

rhondab
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Date Joined Mar 2006
Total Posts : 2146
   Posted 7/14/2006 11:41 AM (GMT -6)   
Hey Katherineweed

I can't offer any advice...still don't have a dx of any kind...but wanted to say welcome to the forum and it's very nice to see u'r acting as u'r mom's ambassador in such an important issue in her life. Again, welcome!

rhonda

uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 7/14/2006 11:48 AM (GMT -6)   

They are both interferons, and both claim to do the same thing -- slow (but not stop) the progression of the disease, reduce the number and intensity of exacerbations.

There have been some studies that suggest that Avonex is the weaker..less effective..of the interferons, primarily because it is injected only weekly. (Betaseron is of course injected every other day; Rebif is daily).  Some studies suggest that keeping the levels of interferon more steady is what is making the difference.

I've been on Betaseron for 12+ years.  I've not seen anything to suggest that I should switch.

Your mom should talk this over with her doctor, and see what his opinion is. 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


katherineweed
New Member


Date Joined Jul 2006
Total Posts : 5
   Posted 7/14/2006 12:51 PM (GMT -6)   
Thanks. The two things that made me consider having her switch is because Avonex has less of a tendency to develop antibodies and is also closer to human protein (where betaseron is not exact to what humans produce)...

shellypoo
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Date Joined Dec 2005
Total Posts : 896
   Posted 7/14/2006 2:10 PM (GMT -6)   
Perhaps she should ask her doctor about an add-on therapy like Imuran or novantrone. They are supposed to help delay progression when it has already started. I am on Avonex and it is 1x a week in the muscle. After 6 months there is virtually no difference between the interferons ability to help with the same stuff. It is the one with the least tendency of developing the antibodies. Like Uppity said, have her address all this with her doc, he should be willing to listen and hear her! Take care.
Michelle ><>
 Smile, Smile, Smile!


Kimber
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Date Joined Jun 2005
Total Posts : 1852
   Posted 7/14/2006 3:18 PM (GMT -6)   
Hi Katherine,

Some people do switch meds but it's usually because of a development of antibodies which makes the med not as effective, they simply cannot tolerate the med due to various reasons or it's just not working. You and her could go visit the doctor and voice your concerns. They should be able to tell her if the betaseron is still working and if she should stay on that, add additional meds or make a switch. Best of luck and it's wonderful that you look out for your mom!

Kimber
 
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katherineweed
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Date Joined Jul 2006
Total Posts : 5
   Posted 7/14/2006 3:22 PM (GMT -6)   
How can they tell if there has been a development of antibodies? She has relapsing-remitting MS, and the main thing that's been affected lately is her balance and coordination and shakiness.....so you never really know if the medicine is working effectively, do you? Is it based on getting any new lesions? Is it symptom-related to figure out if the antibodies are developing? She is also anorexic so some things are hard to tell if it's MS or if it's anorexia-related. If she would just eat.....but that's beside the point. Her doctor doesn't really give her clear answers on anything.....so asking doc for help is tough because he isn't really pro-active....

Kimber
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Date Joined Jun 2005
Total Posts : 1852
   Posted 7/14/2006 4:02 PM (GMT -6)   
Hi Katherine,

They can do a blood test to test for antibodies. Progression is determined by watching the symptoms over a period of time and by looking at MRI's to see if new lesions are developing. They can also take into account the frequency of flares, is she getting them more often, or development of new symptoms or worsening of old ones. If new lesions are present and flares are coming more often it might be worth switching to another therapy. I'm sorry she's anorexic too, that can definately add to the symptoms she is having lately but like you said it can be hard to tell the difference. Has she been seeing this doctor long? It sounds like you don't feel comfortable approaching him with questions sad

Kimber
 
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uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 7/14/2006 4:08 PM (GMT -6)   

Thre is a specific blood test that is run to determine whether she has developed antibodies.  But generally the development of antibodies happens in the first year or so...and you say she's been on Betaseron for 6 years, now...so if this was to happen, it would have happened in the first year or so.  Also, there is some evidence to suggest that even if the antibodies do develop in that first year or so, they may not actually affect the efficacy of the drug. That is, it may not matter, and the drug may still be effective.

If she had a base-line MRI done when she started taking the Betaseron, a new MRI now might show if new lesions have developed.  But of course, NONE of the drugs has promised to stop ALL exacerbations. She may simply be experiencing an exacerbation, which would have happened with or without taking the drug.

You say your mother has had MS for 25 years.  It may simply be that she is declining. I've had MS for 23 years now, myself.  At age 59, it's hard to say if the decline I'm seeing is because I'm simply getting older, and/or if my body is just wearing out becuase of having to deal with a chronic illness for that long, and the disability it brings, and/or if the MS is worsening (I'm secondary-progressive; your mother apparently is still labeled relapsing-remitting, a GOOD thing after all those years!)

What are you wanting your mother's doctor to do?  If she is experiencing a relapse, a possible treatment is steroids, but there has been increasing evidence to suggest that they often do more harm than good. Many doctors choose not to prescribe them unless the patient becomes unable to "perform Activities of Daily Living" -- ADL's -- like, she is no longer able to walk, or her legs won't support her, or she loses bladder or bowel control, or suffers severe vision loss, or is unable to feed herself, or dress herself, or bathe herself, etc.

Presumably you're in contact with your mother, and with the doctor, and if things worsen to the point that she isn't able to care for herself sufficiently, then more drastic measures might be necessary.

It's good that she has such a caring daughter as you to help her monitor the situation. I'm sorry about the anorexia; that can only complicate matters.

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


katherineweed
New Member


Date Joined Jul 2006
Total Posts : 5
   Posted 7/14/2006 4:21 PM (GMT -6)   
Thank you so much for the reply!! I love my mother and want what is best for her. I worry that we could be doing more, taking more and staying more "on-top" of things. That's why I posed the question Avonex vs. Beta Seron. She saw her brother get diagnosed yesterday with MS and the doctor did not say good things about Beta Seron. Says he would not put anyone on it anymore, which got me concerned. But I hate to change it up if it is helping. You just never know! She doesn't feel good right now due mostly to the heat, but she could be exacerbating as well. Thanks for all of the input:-) Any advice on the topic is appreciated.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 7/14/2006 5:05 PM (GMT -6)   

I think doctors often recommend drugs that they are most familiar with.  If they've had lots of patients on one drug that they think are "doing well", then they're more likely to prescribe that drug than some other one.  Is your uncle seeing the same doctor as your mother?  It may just be a difference of opinion. I've not heard anyting particularly negative about any of the drugs, other than the few studies that suggest that Avonex *may* be less effective.

Certainly your mother should talk with her doctor, but generally they don't like to have patients switch unless there is clear and convincing evidence that one is not effective, or if the patient is having difficulty managing the side effects.

As for the heat .. as you well know by now, the heat and humidity is hard on many of us with MS.  If I'm out in it at all, even as little as 20 minutes or so, I'm wiped out for awhile until I cool back down again.  I'm planning to stay inside under air conditioning for the next 4 days or so, or until this ugly heat spell breaks.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


jena1225
Regular Member


Date Joined Jul 2006
Total Posts : 35
   Posted 7/14/2006 5:09 PM (GMT -6)   

I am surprised he would say bad things about a drug that was the very first to come out, and has the best "rate" (30%) in reducing relapses. None of the other drugs can claim to do better. It's not like it has deadly or even serious side-effects, so I don't get it.

With that and that he does not sound to be very concerned, I would most certainly look for a new neuro. Best of luck to you and your mom :)


katherineweed
New Member


Date Joined Jul 2006
Total Posts : 5
   Posted 7/15/2006 8:38 PM (GMT -6)   
we will be looking for a new neuro....i didn't think it would be this hard to find one that is good, but, i guess some are good and some aren't. we've happened to find ones that aren't that good. she's on her third one....anyways, that's besides the point. anyone know any good neurologists in IOWA....

sonny66
New Member


Date Joined Nov 2012
Total Posts : 10
   Posted 11/15/2012 5:32 PM (GMT -6)   
November 15, 2012
Hi
My name is Don. I have MS. I see that you use or think of using Avonex. I’ve had nothing but problems with it short and long term. I’m gone to starting a class action suit. Would you be interested? Don dsc4441@hotmail.com
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