This Is MS Multiple Sclerosis Community: Knowledge & Support

Cathy,

I continue to shake my head as I read story after story about MS docs who don't sit down with their patients and go over all the nasty side-effects that the CRAB drugs are capable of having. At least you were able to find out the truth about them on the net. What happens to the others who don't have this capability? I shudder to think about it!!!

Harry

Harry and co,

While I agree with you that the neuros should set out the possible side effects of MS drugs, in many respects they are fairly irrelevant to most sufferers because of the nature of this disease. One only has to visit an MS group and see some of those who have had this disease for some time - that scenario is what many are hoping to avoid / lessen when taking the current MS drugs. The fact that there is a chance of having a seizure, liver problems etc by taking the drugs will to many be a risk worth taking if the alternative is the huge list of horrible MS symptoms etc and a possible pretty grim end.

The real problem is that no one really knows what impact the current CRAB drugs have on this disease, particularly in the long term. So in effect you might have a double whammy in that the drugs you take may have little or no effect on the disease AND you experience the side effects!
Life would be much easier if there were MS drugs which had been proven to halt or reverse the disease and the side effects of the drugs were publicised. Then individuals could make well-informed decisions. But this is a perfect world which we are probably some way from!

Bromley

This sounds a lot like what David McWilliams, the CEO of PharmaFrontiers Corp, claims for Tovaxin, e.g., 90% reduction in relapses, halts the progression of the disease, 40% of the patients have improved EDSS scores, and little to no side effects.

NHE

Bromley,




Let me see if I understand you correctly. Are you saying that because MS can eventually become so debilitating and patients see what may happen to them, it's not relevant that they know everything about a particular medication before starting on it?

Harry

I am trying to imagine having MS, maybe to the point I need aids to walk, unable to work, then I develop liver disease due to an interferon that nobody mentioned I could get. I think I would be a little upset. If I have to have MS, well thats fine, I will deal with it the best I can. But if you are going to put me on a drug that will ADD diseases, you better let me have the choice. I am very lucky I am still able to do my own research and figure things out for myself. The day I have to depend on a physician to keep me well informed is the day that scares me the most.


Cathy

Harry Z,

I totally agree wiith you that whenever someone starts a drug they should know about all possible side-effects. How much real account one might take of them - I'm not sure.

The point I was trying to make is decision making is very difficult with MS because of all the uncertainties. For a disease which is not as potentially awful as MS then these would be serious considerations e.g. a drug to remove warts but which has a 1% chance of giving you a fatal heart attack. Most would probably skip this drug.

But for MS there is a chance of becoming a paraplegic, blind, out of work, serious cognitive problems etc. For me, if the drug was available to prevent all of these symptoms / outcomes but had a 20% chance of giving you a fatal heart attack, I would take it. Others may not. We end up making decisions where there are huge uncertainties e.g. on how the disease is likely to effect you and individual views on quality of life issues etc. It would be much better if the useless neurologists could give you a prognosis as well as a diagnosis. But currently they can't do this.


NHE - Tovaxin (and Neurovax) are potential treatments I am following closely. It really annoys me that the current CRAB drugs are generating so much revenue for the drugs companies yet offer very little in terms of effectiveness.

Bromley

Bromley,

OK....we are mostly saying the same thing....and that is, the patient should be totally informed of whatever medication he/she may be contemplating to use. At that point, the patient makes the decision as to whether to take the drug or not.

Unfortunately, many MS patients (especially those who don't have or use the internet to obtain drug information) have to rely on their doc for this info. And like so many of us know, that can be a scary situation.

Take care.

Harry