This Is MS Multiple Sclerosis Community: Knowledge & Support

Today, I was offered the opportunity to enroll in the BioMS study looking at the effects of MBP8298 for the treatment of secondary progressive multiple sclerosis. Given that I have slowly but surely progressed in the last few years, I see little options. Let me know what you think.

thanks,

beyondms

Hello BMS
I like you have SPMS and was offered the opportunity last year to join the Lamotrigine trial at the National Hospital here in London. I've posted on the Drug Pipeline forum. One of the things I said there and I'll repeat here is that participation in a trial has to be within a "persons comfort zone". You may listen to the opinions of others but ultimately you need to believe it's the right thing for you.
When I was offered the chance to participate, my first reaction was YES!! GIVE ME THE DRUGS NOW!! After all, there didn't seem to be much else on offer for those of us at the SPMS stage apart from exercise and diet and hope. I didn't want to sit back and do nothing and wait to get worse. I then went back and thought about it less emotionally, weighing up the pros and cons, possible benefits compared to possible risks, the monitoring and support I would receive, the time commitment, tests necessary and so on. I spoke to my GP and also considered how I would feel if I discovered that I'd received the placebo as opposed to the real thing. Would it have affected my decision to participate? Would I feel duped? In my case there was also the bonus that Lamotrigine had been used for a while for other conditions.
Ultimately, I decided to go for it. I'm comfortable with what I did. But I have read of others whose nerve broke whilst on trials or could not accept the potential risks.
It's over to you now.
All the best in making what I know is not an easy decision.
Muu

Have you considered Novantrone? If so, How did that discussion go?

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Understanding MS 101: Doctor Talk and People Talk<br /><br />

Yes, Novantrone is an option but I want to avoid the cardiotoxicity for now.

>>Muu,

Thanks for your sound advice. I have been through trials before (was one of the first patients on Avonex). I know what to expect. With this new drug, if I have the right genes, it could be interesting. I will post my experience as we move along.

beyondMS

Muu certainly wrote an excellent post about the points one should consider on whether one should participate in a clinical trial for an MS drug.

About 10 years ago my wife (MS for 35 years) took part in a trial with a drug that stopped and reversed the disease in that poor MS mouse! About a year in to the trial it was learned that the drug caused a severe heart problem in one patient who unfortunately died. The trial was stopped immediately and it was discovered that my wife was on the placebo.

I have been following BioMs for a number of years now and they appear to be doing it right in how they have progressed with this drug for SPMS....taking all the right steps and not rushing things simply to try and make a big profit. Compared to some drug companies, they seem to have some ethics.

It's such a difficult decision to make and when one has SPMS an extra degree of desperation enters into the equation. Whatever your choice, I hope it works out well for you.

Harry

Thanks Harry,

One of the reasons I chose BioMs is that the side-effects are negligible (so far) and the efficacy of the drug has been demonstrated in a cohort of SPMS patients. Moreover, the founder's wife suffers from SPMS, so he has a vested interest in this drug which is a lot more important than dollars.

What strikes me with the newer monoclonal antibodies is the risk of the deadly infection PML. Even if it's a small risk, once you get it, you're a vegetable. That's what scares me about Tysabri and other monoclonal antibodies.

beyondms

I hadn't realized that about the founder's wife....I guess a very good reason to try and do it right the first time around!



Dr. L. Steinman, one of the co-founders of Tysabri, has repeatedly stated that monoclonal antibodies are very risky drugs to be using and didn't have a lot of very nice things to say about Biogen's handling of Tysabri's introduction. I better stop here or I might be accused again of being too negative on Tysabri or Biogen

Take care.

Harry