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Article on Barts MS Blog on PPMS

I found this article on the Barts MS Blog by the professor there and thought you folk may find it interesting

“You may recall the post I did on a study of interferon-beta treatment in PPMS. After 2-years of treatment there was no difference between PPMSers who had been treated with IFNbeta or placebo. The investigators’ concluded that interferon-beta was ineffective in PPMS. However, when these patients were reassessed at 5-years there were clear clinical and MRI features favouring interferon treatment. I suggested that in progressive MS there was a lag in the onset of action of interferon-beta. I proposed that the impact of anti-inflammatory medications in progressive MS may take several years to play out. In other words progression over the next 2 years is primed by inflammation occurring in the past. Therefore, suppressing inflammation today will have not have an impact over the next 2-years as the damage that has primed progression over the next 2 years has already occurred. In other words all anti-inflammatory therapies will have a lag in terms of showing a treatment response in progressive MS.”

Have any of you been told my your neuro what exactly is happening in PPMS. We know in RRMS the immune system attacks the myelin causing inflammation an d sometimes this leads to axonal damage. In PPMS DMDs dont work so is the immune system not involved in the same way ? Also is there no inflammation which is why steriods dont work ?

Moyna xxx

Hi Moyna, my consultant and related staff always say there’s presently no drugs for the treatment of ppms, only drugs to ease the symptoms. however who knows in the future, as research developes, somehow I know by this time the damage my system has done will be beyond repair, hopefully it will work for new cases if detected early enough. Whilst I’m interested in any developments this interest is for the newly diagnosed.

Note on steroids, I was given mythoprednisolone 500mg for 5 or 7 days several months back when I couldn’t stand, these worked for me within 3 days in that I could stand again and walk. My consultant was taken aback, I don’t think they believed me. Yet they prescribed them through my g.p as an alternative to admitting me to hospital which is what my g.p wanted to do.

Pauline xx

Very interesting Moyna. Thanks for that.

I do think the immune system is involved in PPMS… it’s why many of us hardly ever pick up a virus or a bug… hyper immune system. Also the reason why an LP will show positive is because the immune system has been active in the central nervous system.

All very confusing… but I wonder if the Barts research will mean neuro’s will try us on some of those drugs?

Hope you’re doing well,

Pat xx

Never thought about the link with viruses and bugs Pat. Thinking about it, I can’t remember the last time I had any sort of a virus.

You’ve got me thinking again Moyna!

Interesting!!

xx

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I’ve read this somewhere before…sorry really can’t think where it was!!

Very interesting but as Pat says also very confusing!

its something I would seriously consider though, the amount I’ve progressed over the last three years and especially this year is a bit scary! I cling to the hope that I’m about to plateau!

heres hoping

Nina x

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Interesting isn’t it Blossom. It’s one of the reasons we feel so bloody ill all the time… immune system hyperactivity. When healthy people have flu it’s one of the reasons they feel so rotten… the immune system fighting the virus.

Also why, if we do pick up a virus, it makes the MS symptom worse because our immune system is fighting the MS damage (which it see’s as a foreign body) AND fighting the virus.

Pat xx

This fascinates me but I struggle to take in information which frustrates me. My husband just explaining things to me. I’m going to do some more reading on this. Thank you xx

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