I suspect that the opponents are more vocal than the supporters, myself notwithstanding, and that some people had unrealistic expectations for the ABCR drugs. The manufacturers and doctors have not been guilty of fueling those expectations. I was diagnosed two years ago, and everyone has been rigorously careful to tell me that it's a crapshoot.
I am going to respectfully disagree with you on not blaming the manufacturers or some doctors on the patients' expectations.
One only has to look at the slick videos that the CRAB drug makers provide to the MS patients. They give the impression that if you take their drugs, you will be able to climb mountains and ride mountain bikes. They certainly don't mention any of negative possibilities that may happen to you.
Doctors often don't tell their patients a lot about the CRAB drug that they are going to prescribe. Many may, like in your case, but I am constantly reading about patients who claim on the net that they weren't told much if anything about the cons of these drugs.
Ironically, I was reading an alternative medicine MS forum last night and read a thread about a lady who had just been diagnosed with MS. Her neurologist was going to put her on Betaseron and she was asking for comments about the drug from any of the readers. Here's what was written and I quote each posting:
"Got it (Betaseron) coming next week? My first MS med other than steroids, ever...... Any experiences or info would be helpful?? Thanks"
"My wife was on betaserone for a year. It had terrible side effects and she dreaded it. We would never get involved with it again. "
"I'm sorry I ever tried it. I believe it made me worse off. I had night sweats, chills, trouble sleeping, and an outbreak of shingles shortly after starting it. I have felt like I'm "freezing" from my waist down and cannot walk at all without the help of a walker and have to use a wheelchair at times now."
"Betaseron took Polly downhill faster than any other period in her MS ordeal. "
"I had bad experience with Betaseron, but stuck with it because of neuro's advice and family's fears. Wrong thing to have done. Can't stess enough, that if you decide to try this, listen to what your body is telling you and follow what it is telling you. Don't listen to anyone else but your body. I'm on LDN now and wish I had known about it earlier. My best to you and your decision."
"First, let me explain that the interferons can either make you better, do nothing or make you worse. In my daughter's (MelissaGA) case it was the latter. She was on Betaseron for 18 months and the last year on it she had exacerbations every other month, each one leaving her a little more disabled. When she finally told her Neuro she wanted off, he reluctantly agreed and said that she must be one of the ones it makes worse. We were never told that before. She's been off Betaseron for over 4 years now. She's been on LDN and Prokarin since quitting Betaseron. She went over 3 years without an attack, but had a mild one last summer and a bad one this summer, both brought on by severe stress and overwork. She has a bad habit sometimes of forgetting she has MS. I guess my advice is if you go on Betaseron, be your own healthcare advocate and listen to your body. It will tell you what is right or wrong for it. My daughter is very angry that her neuro kept her on Betaseron so long when she obviously was getting much worse on it. She says she wouldn't have had her residual disability if she had stopped it sooner. "
So far there hasn't been one person that has responded positively to the original question. Of course there are likely just as many people out there who have had much better results with Betaseron but the one comment from Nancy about the doctor not telling them all the possibilities I believe happens far too often with the CRABs. About 6 months ago I read a message on the MS Facts MS forum (Canadian site sponsored and monitored by Teva). A young lady was complaining that she had been phoned by a neurologist from the St. Michael's MS Clinic in Toronto and told that her tests revealed that she had MS, he was going to put her on Avonex and to come back and see him in 18 months!!! And then he hung up!!
I've also attended many MS research updates, sponsored by the CRAB drug makers of course, and not once did any of the docs spend any time at all telling the audience about the possible downside of these drugs.
You were very fortunate that your doc told you that taking these drugs was a "crapshoot". You then made your decision based on knowing this.....many other MS patients don't have that opportunity. I don't have any qualms about a MS patient deciding to take a CRAB drug if they have been given all the info about them and then make a personal decision to do so. But I continue to read that this information simply isn't given to them in many cases.
Sounds to me as if your wife is cursed with MS but also blessed with a relatively mild case of it. I sure hope so, anyway. I feel no need to use the alternatives, but I am not dead-set against them. I just want everyone to be honest about what they are. I think the standard therapies have been marketed in an honest way; not because the drug companies are saintly, but because they are pretty carefully regulated by the law.
I don't think I would call Marg's case of MS mild. She has SPMS which got to that stage in 1995. She had dibilitating fatigue, burning feet, tingling feet, horrible digestion problems, huge sensitivity to the heat, lousy sleep habits and legs that were turning to jello. Since starting on Prokarin in 2001, most of these symptoms have been held in check and at least she has some quality of life at this time. And most important, her MS has not progressed in the past 4 years.
And even though the CRAB drug companies are carefully regulated, a lot gets through the loopholes.