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Posted: Tue Aug 26, 2008 11:42 am Post subject: progressive disease not inflammatory
so much for progressive disease not being inflammatory... _________________ 1st traceable symptoms Jan 01, last edss by doctor 6.5. Feeling better on ginkgo, salvia, capsaicin, curcumin, scutellaria. Interested in other vascular strengthening herbs; pycnogenol, butcher's broom, horsechestnut, centenella, hersperidin
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Tue Aug 26, 2008 3:54 pm Post subject: Re: progressive disease not inflammatory
First, thanks Frank. I don't know where you keep finding the interesting articles, but continue. That one's from June, it almost got by us unnoticed!
gibbledygook wrote:
so much for progressive disease not being inflammatory...
EXACTLY!!
Only in a few years, when we can better detect low grade inflammation, will we fully appreciate what dumb asses we are right now for our current assumptions, based on inadequate imaging and anti-inflammatories which don't do the job nearly as well as we credit them.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Jul 28, 2005 Posts: 1272 Location: Sydney, Australia
Posted: Wed Aug 27, 2008 5:07 am Post subject:
I read this link a while ago on this site, and was surprised how little reaction it received (I downloaded the study as a PDF). After reading this article, I did some searching and also found:
When I have a relapse, two days of 75mg oral prednisone is enough to stop it. So from the above info, I am on a trial of taking two days of 75mg once a month to see how I go. My GP was not concerned by this idea. I will let you know how it works for me.
Well, cureo, your above-posted research flatly contradicts everything my neurologist has ever said. Good job, I don't have much reverence for any "professional"! We are all human and prone to errors, often outstanding ones. _________________ 1st traceable symptoms Jan 01, last edss by doctor 6.5. Feeling better on ginkgo, salvia, capsaicin, curcumin, scutellaria. Interested in other vascular strengthening herbs; pycnogenol, butcher's broom, horsechestnut, centenella, hersperidin
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Wed Aug 27, 2008 6:37 am Post subject:
CureOrBust wrote:
When I have a relapse, two days of 75mg oral prednisone is enough to stop it. So from the above info, I am on a trial of taking two days of 75mg once a month to see how I go. My GP was not concerned by this idea. I will let you know how it works for me.
Thanks Cure,
With one of the more interesting questions in science being whether or not the same amount of something short term high dose is more effective and less dangerous than long term low dose (general radiation, x-ray, magnetic field exposure, poisons, etc..) I have always wondered if long term low dose steroids in MS would be less dangerous and nip inflammation in the bud.
I mentioned that here once and people produced studies which seemed to show less than favorable results, but considering the small number of participants, most MS studies of the past don't really prove anything.
I hope you find great results in that treatment Cure. I think it's a sensible and interesting option.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Jul 28, 2005 Posts: 1272 Location: Sydney, Australia
Posted: Wed Aug 27, 2008 7:36 am Post subject:
Lyon wrote:
I have always wondered if long term low dose steroids in MS would be less dangerous and nip inflammation in the bud.
Everything I have read prior, talks of how people on long term steroids go well for the first ten years, then go downhill quickly after, and meet up with the ones not on steroids. I see this as VERY different to "long term low dose steroids" its the pulses that I think will make a difference.
I have noticed that when I take steroids long term (prior miss diagnosis), I get better, and then plateau. I am hoping that coming off them, I will stay at that point, but when I go again, I will again see a little improvement. Each little improvement building from the last.
I am also keeping the pulses low (75mg oral dose) and short (two days) to minimise any adverse affects.
gibbledygook wrote:
flatly contradicts everything my neurologist has ever said
Which part exactly? did he explicitly talk about regular pulsed steroids? I don't think my "research" was that in depth, I remember I also found another study that didn't share the results above (not at hand now). That' the problem with the iternet, when you look for something, its so big, your bound to find it; even if its flatly wrong, someone would have publish something that would agree with what you want to hear. and i WANT to hear of anything that will improve my EDSS
My neurologist has maintained that steroids have no long term benefit. I don't know what dosage he was referring to but he ruled them out as a treatment. Well, at least your research gives us hope! There must be some natural steroids out there. I'm interested in the TNF research and the chinese herb solanum incanum, as it's described as a steroidal.
Quote:
1: J Nat Prod. 1990 Mar-Apr;53(2):513-6.Links
The cytotoxic principles of Solanum incanum.Lin CN, Lu CM, Cheng MK, Gan KH, Won SJ.
School of Pharmacy, Kaohsiung Medical College, Taiwan, Republic of China.
In continuation of work on Solanum incanum a new steroidal alkaloid glycoside has been isolated from the fresh berries, which is named incanumine, and characterized as O(3)-[beta-D-xylopyranosyl-(1----3glu)-[beta-D-xylopyranosyl-(1--- -4rha)- alpha-L-rhamnopyranosyl-(1----4)]-beta-D-glucopyranosyl)-solasodine++ +. Solamargine, solasodine, ursolic acid, and ursolic acid derivatives (3-O-palmitoyl ursolic acid, 3-O-crotonyl ursolic acid, 3-O-propionyl ursolic acid) exhibited significant cytotoxic effects against human PLC/PRF/5 cells in vitro. Esterification of ursolic acid with aliphatic acids clearly enhanced the cytotoxic effects against human PLC/PRF/5 cells in vitro
Unfortunately this particular herb isn't so common and I would have to get the chinese doctor to prescribe it which if I'm pregnant may be some way off. _________________ 1st traceable symptoms Jan 01, last edss by doctor 6.5. Feeling better on ginkgo, salvia, capsaicin, curcumin, scutellaria. Interested in other vascular strengthening herbs; pycnogenol, butcher's broom, horsechestnut, centenella, hersperidin
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Wed Aug 27, 2008 7:03 pm Post subject:
gibbledygook wrote:
My neurologist has maintained that steroids have no long term benefit. I don't know what dosage he was referring to but he ruled them out as a treatment. Well, at least your research gives us hope!
I can't speak for your neurologist, but it seems that giving steroids during a relapse only shortens the relapse (hopefully) and makes that time more bearable for the patient, but treating relapses with steroids hasn't been shown to reduce deficit accumulation, and I think that's what your neuro must have in mind.
The difference of this situation with Cure is that steroid maintenance....keeping steroids in your system might nip inflation in the bud with the idea that it's easier to keep something from happening at all than to try to control the situation after it's gotten out of hand, and it will be interesting to see if that way of doing things does indeed reduce accumulation of disability. At this point there is nothing hinting that it won't/can't.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Jul 28, 2005 Posts: 1272 Location: Sydney, Australia
Posted: Thu Aug 28, 2008 3:26 am Post subject:
Lyon wrote:
The difference of this situation with Cure is that steroid maintenance....keeping steroids in your system might nip inflation in the bud with the idea that it's easier to keep something from happening at all than to try to control the situation after it's gotten out of hand, and it will be interesting to see if that way of doing things does indeed reduce accumulation of disability.
Not that anyone knows how this system seems to work, but I do not see it personally as "keeping steroids in your system", if anything, the exact opposite.
When I first started using prednisone, I was prescribed 25mg / day, spread out over the day. After some playing with the dose, I found that it was MUCH more effective to do a short high dose pulse. The first technique would of simulated "keeping steroids in your system", and it basically was ineffectual. And even at the high dose, as I said above, I plateau'd in the long term (as well as reduced my bone density).
Lyon wrote:
At this point there is nothing hinting that it won't/can't
There was that one study that did, but I will have to find that link again later.
Today was my first day after a two day pulse of prednisone. I have noticed some fine motor control improvement. Previously when I tried prednisone not following a relapse, it didn't seem to help. But maybe now with more disability, its more noticeable. I will definitely be doing another pulse in 2 weeks.
The objective of this study was to investigate the feasibility of treating relapses of multiple sclerosis (MS) at home with oral dexamethasone. Twenty-five out of 28 consecutive patients with MS who presented with a relapse of less than 2 weeks' duration were treated on an open basis with oral dexamethasone 16 mg per day (four divided doses) for 5 consecutive days. After one week, the expanded disability status scale (EDSS) had improved by one or more grades in 88% (22 patients) and after 4 weeks in 92% (23 patients). Treatment was well tolerated. We conclude that a course of oral dexamethasone 16 mg per day shortens the duration of an exacerbation in MS in a similar way as seen after high dose i.v. methylprednisolone. Although a randomized study is needed to test this treatment regimen against i.v. high dose corticosteroids, oral dexamethasone can be used in situations when i.v. therapy is difficult to apply.
I talked to my GP about it and he said that it was normally prescribed by neuro's for CNS inflammation, and that the dose mentioned was huge. He was not comfortable with prescribing it to me.
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Thu Aug 28, 2008 2:21 pm Post subject:
CureOrBust wrote:
Lyon wrote:
The difference of this situation with Cure is that steroid maintenance....keeping steroids in your system might nip inflation in the bud with the idea that it's easier to keep something from happening at all than to try to control the situation after it's gotten out of hand, and it will be interesting to see if that way of doing things does indeed reduce accumulation of disability.
Not that anyone knows how this system seems to work, but I do not see it personally as "keeping steroids in your system", if anything, the exact opposite.
Hi Cure,
Not to be argumentative....I know you better than to think that you would ever give up on a point, but the Tovaxin trials are a good example of how long steroids REALLY stay in a person's system. From what I've been told, prior steroid use is sometimes "masking" mrtc's close to 90 days.
CureOrBust wrote:
Lyon wrote:
At this point there is nothing hinting that it won't/can't
There was that one study that did, but I will have to find that link again later.
Feel free to send the link if you find it but I think I've already read any that would pertain. Knowing the quality of the studies I've seen......I'll stick to my guns because, despite there being an abundance of studies, I haven't seen any "convincing" reason to think that maintaining steroids in the system of someone with active MS wouldn't be beneficial.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
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