rr vs spms and ppms

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Postby gwa » Fri May 09, 2008 1:33 pm

Thanks for posting, robbie. Your situation does not surprise me. Have a good weekend.

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Postby Lyon » Fri May 09, 2008 1:55 pm

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Postby gwa » Fri May 09, 2008 2:18 pm

Lyon wrote:
When it comes to a debilitating disease affecting 400,000 Americans and there are treatments in which millions (billions?) has been spent on advertising? Maybe the choice for the insurance companies isn't as simple as we think, regardless of whether or not the effectiveness of the crabs has been proven.

Bob


Oh yeah, look at this link which shows the tiered system being used by major insurance companies now. The companies are passing a lot of the cost on to those who have chronic diseases and whose meds are high.

Better start saving for your old age medical monies needs now.

I can tell you that a med will have to work really good for me to pay out thousands per year for treatment.

http://www.usatoday.com/news/health/200 ... usat_x.htm

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Postby ssmme » Fri May 09, 2008 4:19 pm

I read that article and geez I just don't get it. If a person is eligible for medicare it usually means they are disabled or already retired. I don't know too many people with that much disposable income to pay the amount that they're going to be required to pay. Let's say you retire and have 50k USD coming in a year how in the world would you pay the co-insurance and still eat, clothe yourself, and pay for shelter? I've never been on any of the CRAB drugs for the same reason gwa says. For the price, they better be the elixer of life for me to cough up that money.

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Postby robbie » Wed May 28, 2008 6:48 am

So does inflammation stop when you graduate to spms? Is this why all the drugs are targeted for aggressive rrms. Is it just me in thinking that any drug that can help spms would help all kinds of ms. with spms what is happening in the body compared to rrms? It feels like I am worse everyday, is that more inflammation? The bottom line is probably that by the time that it gets to spms there is permanent damage done so then were counting on them coming up with some drug that makes myelin.
When you look at researchers due you think there is any talk that people with spms are to far gone lets so
Concentrate on the ones that have a chance. What about the folks that start out with spms I just don’t get it.
Had ms for over 19 years now.
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Postby gwa » Wed May 28, 2008 8:16 am

robbie wrote:So does inflammation stop when you graduate to spms? Is this why all the drugs are targeted for aggressive rrms. Is it just me in thinking that any drug that can help spms would help all kinds of ms. with spms what is happening in the body compared to rrms? It feels like I am worse everyday, is that more inflammation? The bottom line is probably that by the time that it gets to spms there is permanent damage done so then were counting on them coming up with some drug that makes myelin.
When you look at researchers due you think there is any talk that people with spms are to far gone lets so
Concentrate on the ones that have a chance. What about the folks that start out with spms I just don’t get it.


There is a shift from RRMS, which is characterized by inflammation, to SPMS, which is characterized by axonal damage. Until this damage can be repaired, we progressive types are out of luck. Simply remylenating us will not work because our grey and white matter is screwed too.

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Postby robbie » Wed May 28, 2008 9:19 am

Hi gwa so when you have spms and you are getting worse, by that I mean a new area of your body is being affected say your hands which since the beginning have been good, there cannot be any axonal damage to them yet because they still work so is there inflammation around these nerves and if so why would one of the drugs not work on the areas of inflammation and not the areas that have no inflammation just axonal damage which I think your saying is free of inflammation. All the drugs seem to help stop the inflammation so should i think that in spms there is no inflammation.
Had ms for over 19 years now.
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Postby Terry » Thu May 29, 2008 5:26 am

Can you all clarify this for me? A doc can prescribe anything he/she wants, correct? The issue is then whether the insurance company will pay for it?
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Postby Lyon » Thu May 29, 2008 6:31 am

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Postby robbie » Thu May 29, 2008 7:16 am

hey bob so there really is no reason that the drugs are singled out mostly for rr ms other than the fact that people with rr have natural remissions that they can claim the drugs caused.
you talk about plasticity and the ability to heal so someone with bad ms means they just can't heal anymore, there is just to much axonal damage.
so in my 15 years there
has always been inflammation just a slow mild attack that has eventualy left me where i am.
all i'm getting at is how can these drugs not do the same for someone with spms as rr ms. they would still help stop whats going on and leave the person with what permenant damage they have but the progression would stop.
i just don't understand how there is a reason why someone would not get a drug because they are not active were all active weather were at the start or the end, it's all the same.


here is the inclusion criteria for the campath phase3 trial
Inclusion Criteria:

Diagnosis of MS and cranial MRI scan demonstrating white matter lesions attributable to MS within 5 years of screening

Onset of MS symptoms within 5 years of screening

EDSS score 0.0 to 3.0 WHY WHY WHY ?????
http://www.genzymeoncology.com/onc/clin ... MMS323.asp
≥2 MS attacks occurring in the 24 months prior to screening, with ≥1 attack in the 12 months prior to screening
Had ms for over 19 years now.
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Postby Lyon » Thu May 29, 2008 8:55 am

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Postby cheerleader » Thu May 29, 2008 10:32 am

Dear Rob-
You're right...EDSS score <3 sucks. Yeah, the cynic in me thinks it's because the drug companies know they can show some favorable results with RRMS and low EDSS scores. The irony is that treating progressive MSers would be more lifechanging and more compassionate for more people.

I wanted to see if I could find any clinical trials for progressive MS and EDSS up to 7 now recruiting. Here's what I came up with-

Maestro MBP8298 for SPMS, 62 Locations-
http://clinicaltrials.gov/ct2/show/NCT0 ... sis&rank=2

Efficacy of Cyclophosphamide Versus Methylprednisolone in Patients With Secondary Progressive Multiple Sclerosis (PROMESS)
Bordeaux, France
http://clinicaltrials.gov/ct2/show/NCT0 ... sis&rank=6

Investigation of Simvastatin in Secondary Progressive Multiple Sclerosis (MS-STAT)
Imperial College, London
http://clinicaltrials.gov/ct2/show/NCT0 ... is&rank=94

Phase II High-Dose Cyclophosphamide for Multiple Sclerosis
Stony Brook College, Long Island
http://clinicaltrials.gov/ct2/show/NCT0 ... s&rank=136

So, out of the 300 or so trials for MS, four are for progressive MS- 1%. If there is anything here that might interest you...I hope you might look into it, Rob. Stony Brook is interesting, because they accept progressive for the hicy treatment.

wishing you well,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Thu May 29, 2008 2:33 pm

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Postby robbie » Thu Jul 10, 2008 1:01 pm

I was reading the Revimmune thread and was just wondering about this but posted it here not to clog it with questions.


We are always talking about all these drugs stopping relapses which means that it is stopping inflammation so is it possible that there is still inflammation no matter which one of these drugs you take because it cannot be detected on the current mri? Do some start out with spms or ppms and skip the rr phase altogether? and if so do they have inflammation? Does someone that has had ppms have a lot of lesions or is that not necessarily true, you think that severe disability would show up huge on an mri weather on the brain or spinal chord.
Had ms for over 19 years now.
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Postby cheerleader » Thu Jul 10, 2008 1:12 pm

Hey Rob-
good to hear from you. Jeff always shows inflammation in his blood tests. Even with no inflammation in his MRI, and no enhancing lesions, his blood shows high levels of inflammation. I'm heading to the vascular/blood theory of MS...that there's always something inflamed in MSers, no matter what the MRIs are showing. And that's why you have increases in disability over the years, even with no lesions (like gwa's situation) I'm looking into natural anti-inflammatories right now. Will post in natural or alternative section if I find anything to get his blood levels normal.

best,
AC
ps- this is why I think Revimmune and tovaxin are the best bets now...because they reset the blood.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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