Hi,
I have a question for you. How can anyone possibly tell if a disease modifying drug is preventing relapses if no one really knows how MS works, everyone's MS is different and it is impossible to predict when and how often you will have a relapse? How can studies possibly test this? Even if you are testing a group of people with MS and averaging everyone's response to a medication, how is that really saying anything definitive? Why are the disease modifying drugs only approved for RRMS? Correct me if I'm wrong, are there any approved for other types of MS like PPMS? How does someone with RRMS know if they are doing well because of a medication or if it is the natural course of their disease going into remission? How does anyone know that?
Alicia
Medication for RRMS vs PPMS
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CureOrBust
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Re: Medication for RRMS vs PPMS
You don't. Its all based on statistics from trial results.
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HarryZ
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Re: Medication for RRMS vs PPMS
And the companies that conduct the trials have been known to creatively manipulate the stats to show what they are hoping for!CureOrBust wrote:You don't. Its all based on statistics from trial results.
Harry
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cheerleader
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Re: Medication for RRMS vs PPMS
Hi Alicia--Alicia wrote:Hi,
I have a question for you. How can anyone possibly tell if a disease modifying drug is preventing relapses if no one really knows how MS works, everyone's MS is different and it is impossible to predict when and how often you will have a relapse? How can studies possibly test this? Even if you are testing a group of people with MS and averaging everyone's response to a medication, how is that really saying anything definitive? Why are the disease modifying drugs only approved for RRMS? Correct me if I'm wrong, are there any approved for other types of MS like PPMS? How does someone with RRMS know if they are doing well because of a medication or if it is the natural course of their disease going into remission? How does anyone know that?
Alicia
that is simply the best question I've ever read on this forum. The answer is, no one knows. There are new biomarkers coming into view, which are not MS relapses and white matter lesions associated with RRMS, but gray matter atrophy and loss of brain tissue due to neurodegeneration, found in all pwMS.
Dr. Peter Stys would agree with your line of questioning. Here's a paper he published this week, and a news report on a debate he participated in at a large MS conference. The world of MS research is changing, and you are wise to ask questions.
Pathoetiology of multiple sclerosis: are we barking up the wrong tree?
http://f1000.com/prime/reports/m/5/20/
"Despite all the evidence to the contrary — and maybe even common sense — there's some indication that multiple sclerosis (MS) is not primarily an autoimmune disease but instead is due to a neurodegenerative process that sparks an inflammatory response."
http://www.medscape.com/viewarticle/805251
be well,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
Re: Medication for RRMS vs PPMS
All we know is the aggregate of RRMS study participants did better than the placebo group. Further studies show how people who have remained on meds have done better compared to those not on any meds or who stopped them. You can never know if the meds are working for a specific person based on the variability of the disease itself unless they have a clear pattern that changed once meds were started and placebo is no longer a concern and their disease course is bucking a natural history trend and say, EDSS has improved.
While some treatments have been shown to help SPMS in studies, I don't think any have been shown to benefit PPMS. Of course, getting an accurate diagnosis of what "kind" of MS a person has remains difficult which is why some doctors will at least want to try some meds on people with more progressive disease to see if they appear to help them in any way. No one will know for sure if they have or if the disease would have done what it did anyway. It's debatable whether any of the meds impact on disability levels at all...for anyone. Yet if you look at some of the long term data, you might think that the people who were on meds did end up better off than those that didn't. Of course that could be because the meds only HELPED a certain percentage of people who chose to stay on the meds whereas if they weren't helping some, those are the people who stopped them.
So it's really a crapshoot, isn't it?
While some treatments have been shown to help SPMS in studies, I don't think any have been shown to benefit PPMS. Of course, getting an accurate diagnosis of what "kind" of MS a person has remains difficult which is why some doctors will at least want to try some meds on people with more progressive disease to see if they appear to help them in any way. No one will know for sure if they have or if the disease would have done what it did anyway. It's debatable whether any of the meds impact on disability levels at all...for anyone. Yet if you look at some of the long term data, you might think that the people who were on meds did end up better off than those that didn't. Of course that could be because the meds only HELPED a certain percentage of people who chose to stay on the meds whereas if they weren't helping some, those are the people who stopped them.
So it's really a crapshoot, isn't it?