question

A board to discuss Revimmune as a potential therapy for multiple sclerosis

question

Postby guitarguy » Wed Jun 24, 2009 5:44 am

I read revimmune doesnt work with people who dont have any enhancenced lesions. Has anyone recently had this treatment who has not shown enhanancement for years?

My MS has been mild and I have had it for years, but recently I been having new symptoms. Tingling, burning muscle pain, just no energy, so tired I feel like someone gave me a sleeping pill etc...

My last MRI has been stable, like it always has been for years. Only difference was I had a small lesion on my spine and they said it was gone on the current MRI. I dont have any black holes or brain shrinkage. So I assumed all is good, but I feel just awful! I feel worse now than I have in all my years with MS. I used to love swimming all day, now I just rather sit, when I do swim I am so wiped out for days it's not worth it.

Is it worth it to me to look into revimmune as an option?
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Postby chrishasms » Wed Jun 24, 2009 10:18 am

Sure it is! But so may be CCSVI!! You gotta make the call!
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Postby guitarguy » Wed Jun 24, 2009 10:40 am

waiting to see on the CCSVI. it's really new and I dont have any data on how well people do afterwards. I wouldn't jump into anything like that at this moment.
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Postby LR1234 » Wed Jun 24, 2009 10:46 am

I am going to look into the CCSVI model first as its easy to get tested.
If nothing is found and nothing is fixable I will start looking at things like revimmune or campath (but I am thinking of having children soon so I will wait till after that to actually start any treatment)

My plan is to use the CCSVI model (if something is found) alongside the AI theory...Hit MS from the 2 angles!! I don't see why anyone should rule any of the theories out. MS is complex and although we all hope CCSVI to be the big cause and it may be, we still don't know if it will prevent the antibodies found in the spine and brain from being produced. (If that is indeed happening)
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Postby scorpion » Wed Jun 24, 2009 12:47 pm

I agree with Chris. It is worth your time to look into all the new treatment options!!! I also agree with you that you should wait to see results of the CCSVI data before jumping into anything. The fact that results were supposed to be released yesterday but were not makes me more skeptical about the treatment but that is a discussion for another forum.
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Re: question

Postby Lyon » Wed Jun 24, 2009 12:52 pm

It seems obvious that the biggest problem people with "progressive" MS and MS which doesn't show obvious inflammation on mri is NOT that Revimmune wouldn't work but that the people responsible for the studies want to compile the best and most impressive results for their "product" at this time.

Obviously the quickest, most impressive and most easily documentable results come from symptom relief resulting from dampening higher levels of inflammation.....early MS/RRMS.

"Merely" stopping disease progress in later/progressive/less inflammatory phases, in which symptoms are less owed to inflammation and more owed to axon death/damage, isn't nearly as impressive or documentible, although most anyone with MS would consider stopping MS progress hugely beneficial, and there is good evidence that rebooting the immune system is capable of stopping disease progress in any MS phase.

guitarguy wrote:Is it worth it to me to look into revimmune as an option?
That's the million dollar question because it seems the answer is that no one will be willing to treat you and the answer IS NOT that it wouldn't work.....if you consider "working" to be stopping disease progress.

guitarguy wrote:I read revimmune doesnt work with people who dont have any enhancenced lesions. Has anyone recently had this treatment who has not shown enhanancement for years?

My MS has been mild and I have had it for years, but recently I been having new symptoms. Tingling, burning muscle pain, just no energy, so tired I feel like someone gave me a sleeping pill etc...

My last MRI has been stable, like it always has been for years. Only difference was I had a small lesion on my spine and they said it was gone on the current MRI. I dont have any black holes or brain shrinkage. So I assumed all is good, but I feel just awful! I feel worse now than I have in all my years with MS. I used to love swimming all day, now I just rather sit, when I do swim I am so wiped out for days it's not worth it.
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Postby guitarguy » Wed Jun 24, 2009 2:56 pm

Stopping the disease would be good enough for me, I don't really have any disability at the moment. I do however seem to be getting some irritating symptoms and I am concerned this is going to lead to bigger things in the near future.

MRI's that show enhancement vs ones that don't always confused me, because who is to say that means the MS is progressive? Maybe the MS is just not active at the time and stable. I do not think it always means axonal death. Isn't that the goal to have a MRI without active lesions?
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Postby Lyon » Wed Jun 24, 2009 3:05 pm

guitarguy wrote:Isn't that the goal to have a MRI without active lesions?
It might seem that way but the ultimate goal really is to label something absolutely definitive of MS and be able to eliminate it.

I guess another way of putting it is that "active" lesions are lesions which show inflammation and that isn't definitive enough of MS because there are other things that cause inflammation, therefore it's possible and maybe common to have inflammation showing which isn't really indicative of active MS.....although we've always taken it to be active MS.
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Postby guitarguy » Wed Jun 24, 2009 3:16 pm

The only thing that bothers me about some of the chemo treatments, such as revimmune and campath etc.. is ok, they can get rid of the inflammation.. but are they really getting rid of the disease? I know revimmune is supposed to reboot the immune system, therefore hopefully making it so the disease is not coming back. I hope that is the case, but part of me wonders if all it does is put us back to the start with our MS and it will slowly come back again. if any of that made sense.
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Postby Lyon » Wed Jun 24, 2009 3:54 pm

What you've said makes sense and you hit the nail on the head. Let's stick with "if" Campath and Revimmune are capable of eliminating the MS disease process from your system, how could you be sure that you wouldn't get MS again? You still live under "developed" conditions and you obviously have already shown to have the necessary genetic factor(s).

Literally, without taking any other precautions rebooting at best is giving you a new immune system with the hope that you'll have died of something else before MS can again become a problem. Not to give Revimmune researchers more credit than they deserve but for my interest the value of giving Copaxone for a while after rebooting is that Copaxone is thought to work by throwing off myelin decoys which might work to appropriately "educate" the new and naive immune system this time around and not attack "self", meaning that hopefully the naive immune system can be appropriately trained away from allergy/asthma/autoimmunity this time around.
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Postby chrishasms » Wed Jun 24, 2009 5:14 pm

Ya its wild for me with Asthma. Ever since that treatment I rarely ever use my inhalers and if I do its the Albuterol inhaler on a dusty day. The actual steroid inhaler I still take a puff maybe once every week or two if I remember just because I look at it as maintenance. My asthma is really null and void now.
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