Oddly quiet

[PPP]

On this forum with 'announcement' of new 'wonder drug' Alemtuzumab.

My phone hasn't stopped ringing with uninformed well-wishers asking if I'm trying it.

"Perhaps if they could match my car or wardrobe with side effects" is usual response, perhaps that was rash of me?

"I'll let YOU try it first" is what I should be saying?

[goonasi]

Very quiet - read up on this a couple of weeks ago and all sounds encouraging untill I read about the 3 deaths in the early part of the trial due to patients developing "immune thrombocytopenic purpura" and that now they are entering the final phase 3 stage of the trial that will last 4-5 years !

 

My wife had kittens when she kept hearing the news headlines on the radio all day but with no real information.

[Heste]

Two days ago my wife phoned me while I was on my way home from work to tell me about this big story that had broken on the news. The announcement of a wonder drug that stopped MS in its tracks and repaired the damage.

 

I didn't get my hopes up.

 

When I got home I looked online and couldn't find any reference to it on the BBC, ITN or MS Trust sites. It wasn't on the next TV news either.

 

We put it down to an over played news article.

 

Yesterday it hit the online sites and we got to see the real story. Yes it is a big leap forward but the side effects do rather put the dampers on it. They need to fix that bit where the patient dies before we should queue up for it.

 

I understand that its for RRMS too. I have PPMS so they wont have to come and take away my motability car quite yet.

 

Regards,

 

John

[clare]

JUST FOUND THIS BIT ON FIVE NEWS HEADLINE

 

Doctors have discovered a breakthrough drug for MS sufferers.

 

Researchers at the University of Cambridge believe the drug, alemtuzumab, can potentially stop MS from advancing in people with early stage active relapsing-remitting multiple sclerosis ( RRMS).

 

The drug may also be able to restore lost function caused by the condition.

 

Lee Dunster, head of research at the MS Society, said:

 

"The MS Society has been following this trial closely and we are delighted that it has reported such positive results.

 

"This is the first drug that has shown the potential to halt and even reverse the debilitating effects of MS and this news will rightly bring hope to people living with the condition day in, day out.

 

"More work is needed to prove the drug's long-term effectiveness and we are very much looking forward to the results of the next stage of this important research, which is already underway."

 

For more information visit the MS Society's website or call the Helpline on 0808 800 8000

[debzsanderson]

Mark has secoundary progressive and there never seems to be any decent treatments. At the moment Mark is persevering with the LDN and getting more positive results (gradually). It's good they are trying to find cures but its always good to approach these "wonder claims" with caution until tried and tested properly!!

 

debz xx

[Shirl]

Two days ago my wife phoned me while I was on my way home from work to tell me about this big story that had broken on the news. The announcement of a wonder drug that stopped MS in its tracks and repaired the damage.

 

I didn't get my hopes up.

Yes, John, my husband phoned me too! And my reaction was: when my Neuro has a real treatment to give me, he'll no doubt be seeking me out. Until then...

[fiddlestix]

This site http://www.nhs.uk/news/2008/10October/Page...rughaltsMS.aspx seemed to give as good a coverage as I could find ..... think I'm glad that I score too highly on the EDS to have to even think about it

[Oops]

I rang my MS Nurse as soon as I heard to check it out, and she said she'd see what she could find. True to her word, I came home tonight and there was a parcel of gumph. It's Campath (again), and it looks like it'll only be for RRMS. I asked if having 3 good days the other week could count as a remission. The bad news is that no, it can't, and having had a year with no real let up and no relief from steroids I'm as definately as you can be SPMS now. Some SPMSers who still relapse may qualify, though, so don't lose hope.

[Lindyloo]

I seen it headllining SKY NEWS... I thought 'Great' BUT i new there would be a catch -- good old side effects.... the way they say it as if its no BIG DEAL a few people have died taking this..

NOW would nt it be great to see a drug for all types of MS with no side effects of causing Death..That would be a real headliner..

 

Waiting for the day

[Michelle]

This story was beginning to hit the headlines when Andrew and I went to the MS covention in Manc two years ago. I think they get folks hopes up, and then when you dig deeper, you see that it comes with a health warning

 

Michelle

[LalalaKirby]

They're coming out with these wonderful statistics, which do make it sound impressive. Then you have the autoimmune problems, which did no favours, and wonderful little tidbits like this (from the NHS site):

 

The comparison of MRI data was limited by the fact that there was missing data, and that a high rate of people in the interferon group stopped their treatment early.

 

Being unable to test the long-term safetly of a drug whose name only brings 'beelzebub' to mind is probably not the wonder-drug they're hoping for.

 

Besides that, its only been used on people who are in early stages. They only tested it on people who had been DXed for under 3 years, and were considered in 'early' stages of RRMS, and hadn't had other treatments for MS in the past. Pret-ty sure that's not most people with MS, really. I don't think they'd always be able to catch it that early, considering it can't ever properly be pinned due to it's variation, and they're not always quick to jump to it unless you've had something that could ONLY be explained with MS.

 

Then there's the dying. Apparently only 1 person died though 2 others had the same condition. That'll be a part of the stunning autoimmune problem.

 

 

So yeah, I'd definitely say it was hyped up. Its not even going to be good for people who are in much later stages, or probably not even for everyone with RRMS. I personally would be interested in learning the psychological welfare of the patients -- I can't go on the interferon drugs because I get bad depression. What does beelzebub do?

 

(I'll learn the drug's real name eventually...)

[Michelle]

Steph @ 'beelzebub' gave me a laugh