IV steroids protocol success in PPMS

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IV steroids protocol success in PPMS

Postby Frank » Sat Aug 09, 2008 4:39 am

Its only a small cohort of 11 PPMS patients but still encouraging because disability got actually better over a treatment period of 11 years.

The full text of the study can be found here.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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progressive disease not inflammatory

Postby gibbledygook » Tue Aug 26, 2008 10:42 am

so much for progressive disease not being inflammatory... :lol:
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: progressive disease not inflammatory

Postby Lyon » Tue Aug 26, 2008 2:54 pm

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Last edited by Lyon on Wed Jun 22, 2011 6:58 pm, edited 1 time in total.
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Postby CureOrBust » Wed Aug 27, 2008 4:07 am

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:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1501038

http://www.neurology.org/cgi/content/abstract/57/7/1239

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.
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Postby gibbledygook » Wed Aug 27, 2008 5:33 am

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.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Lyon » Wed Aug 27, 2008 5:37 am

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Postby CureOrBust » Wed Aug 27, 2008 6:36 am

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 :cry:
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Postby gibbledygook » Wed Aug 27, 2008 8:12 am

Hi cureo,

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.
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
<shortened url>

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.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Terry » Wed Aug 27, 2008 3:53 pm

Did I hear you say pregnant? Gibbledyggok, I hope that congrats are in order!
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Postby Lyon » Wed Aug 27, 2008 6:03 pm

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Postby CureOrBust » Thu Aug 28, 2008 2:26 am

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.

Another extension of this I have looked into, is the use of oral dexamethasone. I have never had IV steroids.
http://cat.inist.fr/?aModele=afficheN&cpsidt=1970184
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.
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Postby CureOrBust » Thu Aug 28, 2008 2:48 am

I just tried searching for it, but all I found was affirmations. This one appears to be well referenced across the net. http://www.ncbi.nlm.nih.gov/pubmed/11591843?dopt=AbstractPlus
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Postby Lyon » Thu Aug 28, 2008 1:21 pm

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Postby Caralea » Wed Oct 21, 2009 10:29 pm

yikes...
I'm just very new to the site so I usually hold back before I post but I'm reading this and all of the dosages you are talking about are so small!

My neuro puts me on 1000 Mg/day of IV solumedrol for 5 days when I have serious exacerbation with new lesions. I've had this done to me probably 5 times or so times over the last 10 years. This past year and a half I've been on that regime once then a few months later just three days and now I'm starting the 5 day thing again.

Maybe I'm on the wrong thread...
<worried look>

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