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bromley
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Lyon
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 Posted: Tue Jun 17, 2008 3:53 pm Post subject: |
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Thank you Ian!
Although it's doubtful that someone else could possibly be as fond of you as you are of yourself......I'm getting pretty darned fond of you and these interesting links you've been posting lately.......on the other hand I have to wonder if you are intentionally trying to piss me off | Dr Kerr wrote: | | “I believe our preliminary results in treating MS with Revimmune are unprecedented with an average functional score improvement of about 40% in these patients who were tracked for two years after receiving therapy with sustained restoration of their functional improvement. |
Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial. |
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bromley
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| Posted: Wed Jun 18, 2008 6:06 am Post subject: |
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Bob,
You're more bonkers than I thought. I can't see what you are on about.
I think you should start smoking again and getting back into your old ways of spending your evenings in sleazy lap-dancing clubs.
Ian |
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Lyon
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Location: Mid-Michigan
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| Posted: Wed Jun 18, 2008 7:24 am Post subject: |
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| bromley wrote: | Bob,
You're more bonkers than I thought. I can't see what you are on about.
I think you should start smoking again and getting back into your old ways of spending your evenings in sleazy lap-dancing clubs.
Ian |
But I still cuss, spit, womanize and frequent the lap-dancing clubs per usual, smoking is all that I've quit. For better (probably worse) I still make as much sense as I ever did 
Nah, it's just always aggravated me to no end that the JH/Revimmune researchers would like to take the credit for improvement of symptoms. About 99% of the general population, not knowing any better, are willing to give that credit, when improvement in symptoms is ENTIRELY a matter of slowing/stopping the disease process to the point that the body's plasticity/healing process is able to do some repair/rerouting and is in no way specific to Revimmune.
Considering that I'm a proponent of HDC, that is in no way intended to be a slam and is only mentioned for the sake of accuracy.
Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial. |
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ladystewart
Getting to Know You...
Joined: Jun 08, 2008
Posts: 18
Location: Southern California
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| Posted: Wed Jun 18, 2008 1:09 pm Post subject: SPMS |
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OK-- I just got off the phone with Dr. Hammond and I was told that Revimmune is not very effective in people with SPMS. I am soooo finished now. I was diagnosed with RRMS and he said they are using RRMS patients. So if I had the treatment when diagnosed RRMS (2002) it would have been better?????????
I have to wait until I am peeing/shi---- on myself??? So I have a husband and 2 chidren and they suffer because I can do nothing now for them!! sorry---venting--UGH 
GOD help. My mother had MS and I am worse. Been desling since I was 12 years old. Stemcell transplant??  |
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robbie
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Posts: 735
Location: Northern Ontario, Canada
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| Posted: Wed Jun 18, 2008 2:25 pm Post subject: |
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| Quote: | I was told that Revimmune is not very effective in people with SPMS. I am soooo finished now. I was diagnosed with RRMS and he said they are using RRMS patients. So if I had the treatment when diagnosed RRMS (2002) it would have been better?????????
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what a f$$king joke!
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Lyon
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| Posted: Wed Jun 18, 2008 4:43 pm Post subject: Re: SPMS |
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| ladystewart wrote: | | OK-- I just got off the phone with Dr. Hammond and I was told that Revimmune is not very effective in people with SPMS. |
What is and has always been the crux of this biscuit is what the definition of "not very effective" actually means.
Considering that SPMS and PPMS involve more structural nerve damage and less symptoms due specifically to inflammation, it seems that most people, including research neurologists who should know better, consider something "less effective" on SPMS and PPMS which doesn't necessarily show an immediate and startling reduction of symptoms, despite good reason to believe that the treatment stopped disease progression.
Anyone is welcome to believe what they want and I don't blame them for being influenced by opinions of research neurologists.......but with time you will find that Revimmune and Tovaxin work just fine on SPMS and PPMS when "effectiveness" is judged by ability to stop the disease process and not the resolution of symptoms.
| ladystewart wrote: | | Stemcell transplant?? Rolling Eyes |
If you are referring to ASCT, the risk is greater, longer recuperation time and offers less benefit/chance of benefit than HDC/Revimmune.
Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial. |
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ladystewart
Getting to Know You...
Joined: Jun 08, 2008
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Location: Southern California
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| Posted: Wed Jun 18, 2008 5:39 pm Post subject: |
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I think some who have had treatment, and doing well, were PPMS. I thought PPMS was worse than SPMS---I am thinking about email to send to JH...........
Shar---- |
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Lyon
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Location: Mid-Michigan
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| Posted: Wed Jun 18, 2008 6:15 pm Post subject: |
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| ladystewart wrote: | | I think some who have had treatment, and doing well, were PPMS. I thought PPMS was worse than SPMS |
Personally? My mind wraps around the mindset "progressive" and I don't like to and I don't think it's sensible to distinguish between SPMS and PPMS.
SPMS and PPMS likely are one and the same and in those considered PPMS the RRMS phase was mild enough not to have been noticed or at least not diagnosed in those who are now considered PPMS. I think all of us are aware of people who sought diagnosis and were "in limbo" for years only to ultimately be diagnosed PPMS. That is an obviously incorrect and ridiculous situation. Just because someone wasn't diagnosed during RRMS doesn't mean it didn't happen. Conversely, just because the driving force responsible for the waxing and waning in RRMS wasn't as intense as normally seen, doesn't mean that someone didn't go through RRMS and experience the damage of the RRMS phase. That is heart of the (seemingly) "progression of disability without inflammation" conundrum.
I think it's enlightening to realize that, even with the low number of autopsies done in recent years, there are cases in which MS wasn't suspected in life but was diagnosed at autopsy....sometimes MS is so mild that a person dies of old age without knowing that they have MS and/or find reason to seek diagnosis.
That in itself answers a lot of questions in that it makes us mindful that MS incidence does involve gray areas and isn't really the "you either have MS and know it, or you don't", "pregnant/not pregnant" situation that most people consider it to be.
Bob
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robbie
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Location: Northern Ontario, Canada
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| Posted: Wed Jun 18, 2008 7:18 pm Post subject: |
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so there is 9 people with ms treated with Revimmune and they are saying that it won't be as affective with spms, how do they know that?
_________________
~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out |
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Jamie
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| Posted: Wed Jun 18, 2008 7:33 pm Post subject: |
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There are a lot more than 9.
Just that study had 9.
There's a couple of hundred. Still not huge numbers admittedly. |
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robbie
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| Posted: Wed Jun 18, 2008 7:41 pm Post subject: |
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jamie how many total in this trial were spms?
_________________
~i guess i know i just hate how it sounds~
I see seven towers
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Lyon
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| Posted: Wed Jun 18, 2008 8:18 pm Post subject: |
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It seems that intentionally no one in this study was SPMS by definition, although the majority of registrants were high EDSS (2 sevens, 2 six point fives, 2 fives and a four point five EDSS).
| The writers wrote: | Second,
we reasoned that patients with active inflammatory
disease would be more likely to respond to HiCy
therapy than those with later-stage MS and more limited
inflammation. Finally, we reasoned that such patients
might have more reversible disability than those
with later stages of the disease. |
Kind of sums up the points I was trying to make earlier. The current viewpoint is (inaccurately) that effectiveness is synonymous with improvement of symptoms and not stopping the disease mechanism/progression. That is an unfairly misleading situation in that, although people with "progressive" MS might not experience seemingly miraculous improvement of symptoms, I think and hope that most of them would find it beneficial not to progress from a 7 EDSS to a 9 EDSS.
Stopping disease progression is one benefit and improvement of symptoms is another level of benefit which maybe not everyone will experience, but reduction of symptoms alone is in no way an accurate indicator of the effectiveness of a treatment.
Bob
| (REPRINTED) ARCH NEUROL/VOL 65 (NO. eight), PUBLISHED ONLINE JUNE 9, 2008 wrote: | We studied HiCy therapy in a cohort of patients with
aggressive, inflammatory MS for several reasons. First,
because this was a pilot study of HiCy treatment in MS,
we wanted to explore only those patients who had worsening
disease while receiving conventional therapies. Second,
we reasoned that patients with active inflammatory
disease would be more likely to respond to HiCy
therapy than those with later-stage MS and more limited
inflammation. Finally, we reasoned that such patients
might have more reversible disability than those
with later stages of the disease.
Treatment with HiCy not only halted the accrual of
disability that occurred prior to HiCy treatment but also
stably reduced this disability in many of the patients. We
suggest that the total disability in these patients is contributed
by demyelination, axonal injury, and ongoing
inflammation. Cessation of active inflammation by HiCy
ablation might facilitate a permissive environment for reparative
plasticity in the central nervous system that could
account for some of the clinical improvement we observed.
In this context, the 2 patients who had had a high
level of sustained disability (patients 1 and 2; EDSS score,
7.0) did not experience a reduction in disability, although
they did experience a modest improvement in
MSFC score. Perhaps this is suggestive of a limited window
during which endogenous central nervous system
reparation is viable. Therefore, it is unclear if patients
with this high level of disability are the optimal cohort to
study further because their response to therapy was more
modest. |
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial. |
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robbie
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Joined: Jan 28, 2005
Posts: 735
Location: Northern Ontario, Canada
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| Posted: Thu Jun 19, 2008 8:00 am Post subject: |
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so there is 9 people with ms treated with Revimmune and they are saying that it won't be as affective with spms, how do they know that?
just say the trial at JH
_________________
~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out |
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ladystewart
Getting to Know You...
Joined: Jun 08, 2008
Posts: 18
Location: Southern California
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| Posted: Thu Jun 19, 2008 9:39 am Post subject: |
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| 9 people at JH. 1 gets better--what if I am the 1. To me EVERYONE deals with medication differently. If Revimmune takes away my immune system then all will be gone. I was told to take the pulse of Cy---difference?? I agree that 'progressive' is 'progressive. |
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