This Is MS Multiple Sclerosis Knowledge & Support Community

Dear all,

Today the MS nurse came round to teach me to inject, I asked her lots of questions as she knew most of the MS consultants working at the Institute of Neurology in London and has been working with MS patients for years and years.

- I found the injection fine (using the auto-injector). I am now waiting for the flu symptoms.

- My area in London is where Aimspro (goats serum) was given out by GPs on an informed consent basis. She has a number of MS patients who are taking / have taken Aimspro. She has seen no clinical benefits in these patients.

- On Tysabri she thought that (if it was licenced in the UK) it would be used as a 'rescue therapy'.

- She confirmed what most in the profession say - MS affects everyone differently and the effect of treatments varies. She mentioned a young nurse who was having relapse after relapse and the CRAB drugs were having no effect. She was put on Novatrone and is back to work full time. In this case Novatrone had really good effects but was not always the case.

- She said that most of the sufferers she sees have had a run in with Glandular Fever (EBV) prior to MS developing. But she also mentioned others who had a run in with Chicken Pox (another virus).

- She had recently met a leading French researcher on stem cells at a conference. The researcher had no time for the stem cell treatment being offered in Holland (which is in the UK press on a daily basis). This researcher was of the view that stem cells for treating diabetes was probably five years away and that stem cells were also likely to be beneficial for Parkinsons as damage was mainly restricted to one part of the brain. The researcher thought MS was less likely to benefit from stem cells because the damage was so widespread in the CNS. [My view - there are lots of researchers looking into stem cells for MS. Also other options include molecules which encourage repair etc]

- On the plus side she knew one of the MS consultants I had seen (and one of his colleagues). She mentioned how 'driven' they were, which can only be good in the long run.

Just thought others might be interested in the experience / views of somebody involved in MS.

Ian

I had chicken pox and measles as a kid, no problems until mono(EBV) at age 51 about 3 years ago. Now in all probability PPMS?

I have no clue on what could trigger this but it seems suspicious to me.

TheSleeper,

You might want to see the thread on infectious cause. There may of course be many triggers but EBV (Glandular Fever in the UK and Mono in the US) looks likely to play a role for some with this disease. A virus would explain some of the MS outbreaks and the clusters that are seen in some areas / institutions (eg Universities). It would also explain the age of dx (usually between 20-40). Young children with MS had a much higher incidence of infection with EBV than controls (children without MS).

One of the top UK MS experts at the Institute of Neurology is holding a conference on EBV and MS in May.

Of course, if EBV was involved, it might be a trigger for the cascade of events associated with MS, or may lie within the CNS and be the cause of the immune system involvement!

You said that you might have PPMS - there is currently a trial taking place with a drug called Rituximab. Not sure if the trial is closed but you might want to ask your neuro.

Ian

bromley,

I am disappointed in the nurse's view of Aimspro and her patients. It is due to be released soon and I had been hoping for good patient progress when it was available again.

There seem to be a few people that have had symptom relief on it, but this news is tempering my initial enthusiasm for Aimspro's return.

gwa

Ian, I saw a MS specialist at the Cleveland Clinic`s Mellen MS center and I am waiting for my referal back to him. At this point anything seems less risky to me than the chemo.

I certainly intend to ask about any opition available to me the next visit.

Sorry for relaying the news on Aimspro. But it's not just the MS nurse who has expressed reservations. My father knows someone who used it and while initially they got some benefit it wore off in a few months. The real issue is the trials which were either halted or failed to show any benefit. When the stories broke in the UK 18 months ago, there were reports of people throwing away their wheelchairs etc. I suspect much of this was hype.

I'm much more hopeful about Rituximab.

Ian

bromley,


One of the things that has concerned me about Aimspro is that there have been no studies on its efficacy and yet the backers of the serum keep pushing for its release.

The last news item released on it told that it will cost about $300-400 a week and that Daval was trying to get it worked so people from the US could get it in the UK and take it home with them.

I know for myself that I would not be able to afford a plane trip to England and that much money weekly for a product than didn't make my current symptoms A LOT better so that I could return to work in order to pay for the serum.

There are a couple of research projects going on now that seem to be more realistic in bringing a helpful medication to market than Aimspro.

Aimspro people can prove me wrong any time with a terrific product and I will gladly eat my words.

gwa

GWA,

There were two trials (see the Aimspro section). The optic neuritis (sp?) showed no real benefit and the trial of SP patients held by a reputable UK hospital was stopped - Daval claim that the hospital did not store the drug properly!

My issue is this. The press articles claimed that sufferers threw away their wheelchairs / canes etc. If someone in an MS Society walked in one day after using a cane / wheelchair, others would want to get access to the drug (which was available in my area from GPs on an informed consent basis). A head of steam would build up and lots of people would be throwing away their wheelchairs / canes. Neuros would begin to take notice. But this hasn't happened and the proper trials did not deliver such results. When I mentioned Aimspro to the neuros I have met they all shook their heads. It's all gone a bit quiet here on Aimspro but I think they have tried to get apporval in Australia.

I would love to be proved wrong but given the results in the two trials to date I wouldn't hold your breath.

Rituximab is being properly trialled for SP and PP (and RR). As I noted before one of the neuros I am in contact with said it was very promising. But we will not know for sure until the trials are completed and the data analysed. I've seen no references to any proper trials for Aimspro.


Ian

Well, I was a bit upset about the stem cell comment but I just found this which is sort of positive, works for rats, but to be tested on real people soon....I hope the link works.....and I hope the results turn out to be good.

http://www.townhall.com/blogs/c-log/Mic ... 85981.html

Goodnight all. (there's no emoticon for sleepy!)


J.

Jaded,

Here are two factsheets by the UK MS Trust - one on the stem cell treatment offered in Holland and the other on stems cells and their potential use in MS.

http://www.mstrust.org.uk/news/article.jsp?id=871

http://www.mstrust.org.uk/downloads/stem_cells.pdf

Stem cell treatment for MS is still some way off - maybe 5-10 years. Professor Neil Scolding in the UK is looking at stem cells for re-myelination but the trials are still 2-3 years way.

The debacle in South Korea shows that there is still some way to go. But of course, advances can come quickly in these fields. But trials will need to be undertaken - the last thing you would want is for the stem cells to create even more problems e.g. tumours.

But there are other options for repair - finding out why re-myelination fails, chemicals to encourage nerve growth, therapies to protect nerves etc. The key issue is to stop the de-myelination in the first place. So there are other avenues being pursued, but stem cells may not be the answer (particularly in the short term).

The really sad point is that sufferers of this disease, particularly in the progressive stages, have little option as there are no current licensed treatments. At the end of the day the NMSS has spent $500 million on research since the mid 1940s, the revenue for the CRAB drugs is over $4 billion a year, and neurologists will retire on their fat pensions. Meanwhile some sufferers in the progressive stage are forced to spend $20,000 of their own money to be injected with cells drawn from an umbilical cord. Doesn't seem quite right to me. The UK government sometimes raises extra taxes on companies which make excessive profits e.g. the oil companies. Perhaps governments might conside doing the same for the CRAB maufacturers and using the money to help those with this disease.

My rant is based on two factors (i) Serono were fined yesterday for too pushy marketing following the withdrawal of Tysabri (ii) when my Rebif arrived I got a 'free' shoulder bag with Rebif on the side. Do I sound like the sort of person who would use a bag with the name of an MS drug on the side?


Ian

Ok, I know it's not funny...but it really is. A tote bag with "Rebif" blazoned on the side?!! It's so absurd! MS fashion accessories? A little gift with purchase? Oh yes, that's exactly what I want - and let's face it, these drug manufacturers don't make enough money, they need some extra promotion. I need a bag that says "CRAB"...it will announce my mood about ms and about the drug manufacturers....

lol, Mary seriously!

Thanks Ian.

I can understand your rant - it's a bit of a joke, but as Mary says, you gotta laugh. It's crazy. It's ridiculous, in fact.


I wish there was something that we could do about the injustices of the pharmacueticals making money out of us. It makes me fume.

J.