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Clinical effectiveness

A board to discuss the Multiple Sclerosis modifying drug Betaseron

Clinical effectiveness

Postby treez » Wed Aug 04, 2004 9:57 am

I've browsed many many MS sites and if nothing else, there is much research to support the use of ABC's. I've been on Betaseron since April and the side effects are all but gone. My wife is a Pharmacist of 20 years and we feel we made a well educated choice over the others available. My question to all. Although the research supports Betaseron and all the ABC'c available, from a real life standpoint........DO THEY WORK? Fewer attacks, milder attacks diminished symptoms? I personally don't have much experience with MS or the Meds. I was just diagosed in April and started Betaseron immediately......who wouldn't?

Again.from a real life experience standpoint, does it work?

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Postby Niko » Wed Aug 04, 2004 10:49 am

Hello treez :)

I've been on Betaseron for about two years now. I went through an adjustment period as well.

I can definitely say that there have been fewer attacks and my symptoms are milder and, as a whole, everything seems to be on an even keel.

Before starting with Betaseron, my symptoms of numbness, fatigue, balance... all would vary intensity constantly throughout the day. Agrivating to say the least.

So, for me, Betaseron works very well. I'm happy with it and so is my neuro.

Cheers,
Niko 8)
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Postby mscaregiver » Wed Aug 04, 2004 11:49 am

Greetings, I can state from experience from caring for someone with MS , who has taken several of the ABCR,s , that the reality of the situation is from my research and actual hands on experience , taking these and not taking anything , in my opinion, will basically give the same results, only by using the ABCR's, there will be side effects..

I think if one looks over the data, as for long term use of these treatments and comparing the results to those who take nothing, one will find very little difference..

When taking the treatments and an MRI is done and there is less or reduced sclerosis activity, then it is " well its working", yet it is a fact that the natural aspects of this disease is for the sclerosis activity to vary, so in that regard, it is a moot point as to the validity of "it is working".

Sclerosis activity is the benchmark used by the medical profession as a gauge for MS status, it is my opinion that this is nothing more than a way to have something to relate the persons symptoms to and to promote drugs, the sad fact is , there is actually nothing that has been medically used for many years that actually does anything to alter the natural progression of this horrid disease..

For many years all treatments for MS were, and are, nothing more than an attempt at "management" , and experimental is nature, the natural cycle of this disease is to surge and regress and slowly progress with degenerative properties, this process is with or without treatment..

As to the views of the treatment slowing the progress, how is it even be possible to document this? what kind of balanced comparative study can possibly be done with something whose natural progress is compiled of consistent variables , which are non consistent as per individual.

I have never believed MS was an "auto immune" disease, I actually do not believe anything is an "auto immune" disease, this term to me is outrageous, once something is classified as an "auto immune" disease, it is then an open market for endless drugs to be tried and fortunes to be made, while sick individuals suffer at the expense of greed over honesty and true compassion..

These opinions are mine, from my research and my personal experience, as to their validity, I stand firmly in my beliefs, and maybe someday I will be proven wrong and those that suffer will be "honestly' helped..

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Postby HarryZ » Wed Aug 04, 2004 1:01 pm

Niko,

How much the ABCR drugs really affect MS patients can really become a topic of conversation. Some people state they have been helped in reducing the number of exacerbations and in some cases, symptom relief.

The problem with MS is that it is so different in each patient and everyone reacts differently to medication. Trying to determine if the drug is working can be difficult at the best of times. Some people can become very sick when taking them as well. I know personally of 3 people who took Betaseron and all 3 became very ill and had to quit the drug. I spoke to a man last week who was diagnosed about 18 months ago and he starting taking Avonex. He has been so sick for these 18 months that at times he can't even keep down a glass of water!

The trials show that about 1/3 of the users get about a 30% reduction in exacerbations. MS symptoms, quite often, are not affected at all by the drugs.

My wife has had MS for 30 years and after she was initially diagnosed in 1971, she took nothing for the next 29 years. For about 20 years the MS remained quite dormant but eventually started to come back. If there had been the CRAB drugs back then, she likely would not have taken them. She went 20 years without a problem but who knows what would have happened to her if she did have the opportunity to take them.

I personally don't like what I have seen these drugs do but each and every patient has to make their own decision. My wife started on Prokarin in 2000 and LDN in 2003. Her SPMS hasn't progressed since being on these drugs and they aren't anywhere close to having the side effects that the CRABS can give you.

My suggestion is to do the research, ask the doc to tell you EVERYTHING about the drug and then make your own mind up.

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Postby wilson » Wed Aug 04, 2004 2:34 pm

I think most neuros would say that taking one of the ABCR drugs would be the best choice.

As for the pharmaceutical companies, I wouldn't trust them to feed my dog.
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Postby Niko » Wed Aug 04, 2004 2:57 pm

It is very true. What one med will work for one person, may not work for another.

The MS affects each person differently. We know that :) Different symptoms, different levels of severity,levels of mobility.... too many differences...

If you could get ten MSers into the same room... the only thing they would have in common is MS... the details will highlight the differences.

So... I can only say that Betaseron works for *me*. For me right now... what it/I will be in five years, I don't know. I can only work with today :)

I wish all MSers well in whatever path they choose.

Cheers,
Niko 8)
"Avoid making irrevocable decisions when tired or hungry." -- Robert Heinlein
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Postby HarryZ » Tue Aug 10, 2004 8:15 pm

Niko,

>It is very true. What one med will work for one person, may not work for another.<

Today, my wife was speaking to another MS patient that she met not too long ago. This person, not too long ago, was able to walk, drive and lead a relatively symptom free life.

She then was convinced to take part in a Betaseron trial at the MS Clinic here. Within a short period of time, she became very sick, began suffering from facial pain, lost her ability to drive and now can't walk. She was removed from the trial.

The patient told Marg that the clinic did not enter her results in the overall trial data...starts to make me wonder just how many similar situations have taken place where the data was "skewed" to ensure better results!

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Postby Jayne » Fri Sep 24, 2004 12:17 pm

:lol: :lol: I'm happy to report on my 10 years+ betaseron usage. I had been experiencing severe exacerbations but betaseron stopped them. [/i][/b]
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Postby HarryZ » Fri Sep 24, 2004 5:03 pm

Jane,

Jayne wrote::lol: :lol: I'm happy to report on my 10 years+ betaseron usage. I had been experiencing severe exacerbations but betaseron stopped them. [/i][/b]


Glad to hear you are doing so well on the Betaseron. You are one of the fortunate ones who have benefitted...I know of many using this drug who have become much worse. I hope you continue to enjoy success.

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Postby elaine » Fri Dec 31, 2004 12:19 pm

I have delveloped antbodies against betaseron or as we call it here in Australia betaferon.Has this happened to anyone else out there?

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Postby HarryZ » Fri Dec 31, 2004 2:14 pm

Elaine,

Supposedly Betaseron use has the highest incident rate of antibodies than any of the interferons. In many cases they will return to normal but if they don't you usually have to discontinue the drug.

Sorry to hear the problem.

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Postby Sarah4 » Sat Aug 13, 2005 1:57 pm

I'm on Betaferon and spent quite a long time researching it. What I found that they don't all actually reduce relapses by one third, some are better than others.

I found that the current thinking is that high dose, frequent therapies ie Betaferon and Rebif are the best choice, My Neuro said that Copaxone is no better than placebo even after 2 yrs!!!!!! And that Avonex is only active for about 4 days so the other 3 days I'd get no protection!

I've gone for Betaferon because I know someone on Rebif who gets a lot of pain even quite a while after her injection. I guess we are all different. It took me a long time to research what I should take but I am sure I am on the best. It has been around the longest and my neuro said that the company that produces Betaferon are just about to announce some new findings.

I'm happy to report I'm feeling really well.
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Betaseron washout now at 13 months.

Postby TheTysabriBull » Wed Nov 30, 2005 7:51 pm

I quit Betaseron in Oct2004 after almost 10 years of therapy in preparation to go on Tysabri earlier this year. Oddly enough, an exacerbation that had appearred in mid 2004 followed by more relapses late last year, has not returned. I honestly believe that beta interferon may have actually aggravated my MS at various times during the course of therapy over 10 years, possibly due to unmonitored NABs developing and rendering the therapy practically useless whenever they occurred.

I have actually felt better these last 13 months since quitting Betaseron and not being on any available ABCR. Maybe I got a little help from the 2 doses of Tysabri I got earlier this year? I'm definitely looking forward to it being back on it in the near future.
21+ year Veteran MSer, 10 Year ABCR junkie, and one lucky guy who is experiencing the magical wonders of Tysabri for MS. I maybe totally blind in one eye but, I can sure see straighter out of the other.
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Postby amelia » Thu Dec 01, 2005 1:00 pm

Gary, my hubby, took Betaseron for around about 2 years. His attacks have always been really bad, flat on his back for months, learn how to walk again, etc. While he was on the Betaseron, his attacks became far in between and they did seem less, but we also learned with his MS that if he IMMEDIATELY started oral cortisone, moderate dose, at the first signs of a definited attack, he got better. At the end of his Betaseron days, he had several bad attacks in a row. He decided that the Betaseron was doing no good, and he felt bad all the time with it, so he stopped. They did learn that he developed the anitbodies. He went downward in a tail spin of attacks. One every month to 6 weeks. This is where his bad disability started. After about a year, he got on Copaxon and they diminished. He has no problems with every other day therapy on Copaxon. That is our choice with his Dr's consent. Is it the miracle drug? For now it is for Gary. His friend, on the other hand, started Copaxon and has gone down from taking nothing. He had to stop Betaseron because of bad liver profiles. So yes, all medicines are different on each person with MS.
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Postby HarryZ » Thu Dec 01, 2005 5:09 pm

Amelia,

Out of curiousity, did they discover the antibodies in your friend who took Betaseron towards the end of its use when he was having problems or was he monitered from the very beginning?

Thanks.

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