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Has anyone tried or thought of trying Lamotrigine? It's in trials at present for MS for neuro-protection etc., but is a drug normally taken for epilepsy and bi-polar.
Phil.

Phil, Muu is part of the lamotrigine trial. I think it looks like one of the most promising things out there in the pipeline right now.

Thanks Dignan,
I'd be interested in Muu's experience with lamotrigine. My neuro has offered to put me on it, if I'm interested.
Phil.

I think the brand I took was called Lamictal. I was only on it for about a month. I freaked myself out worrying about the possibility of getting Stevens-Johnson Syndrome so I quit taking it. Probably completely without cause. I saw too many pictures of the disease on the web. My skin hurts sometimes because of my neuropathic pain so I wasn't taking any chances.

Hi there. Muu here- official Lamotrigine guinea pig.
I have been on a Lamotrigine trial at the National Hospital in London since June 06. It's another double blind trial so I don't know if it's the real thing or not. I am constantly changing my opinion as to whether I think I'm on the real thing or not. I will give progress reports from here on and will do my best to answer any questions. Post them here or pm me. All the best.
muu

Phil
You asked about the Lamotrigine trial....here goes.

First a little background. I'm 41 whilst only officially dx in 2005 with SPMS. MS was first considered 13 years ago and it looks like I've had ms since aged 20 and my first attack of Optic Neuritis. In what must have been the RR phase my attacks were v mild and the course it has taken non aggressive hence the delay in a firm dx. It was only when I developed foot drop that the matter was taken up again. I was diagnosed by Dr Giovannoni (Bromley mentions him from time to time) at the National Hospital in London. There are no drugs currently licensed on the NHS for SPMS but Dr G put me forward for the Lamotrigine trial and after jumping through various hoops I was accepted for it.

I discussed the drug with my own GP and did a little research of my own. As a drug that has been used for several years in the treatment of epilesy my GP considered Lamotrigine a known quantity. I am monitored closely under the trial and there is always someone there to answer questions. I have regular MRI's and general neurological tests ie. peg test, eyesight test, walk test, dreaded cognitive maths test, strength tests plus blood tests. Nothing painful!
Being in the SPMS stage the idea is to test the efficacy of the drug as a neuro protector and the level of progression of degeneration in those on the placebo compared to those not on it.
The drug is administered on an escalating increments starting at 50mg a day and rising to 400mg over 2/3 months. As mentioned in my last post the trial is double blind so I'm unaware as to whether I take the drug or the placebo. As already mentioned by another poster the real drug has mood stabilising qualities and is used for certain bi polar conditions where conventional therapies cannot be used. The only time I was convinced I had the real thing is when I was on 100mg and in an extreeemely (!) good mood for a few days. The general view was if that was a side effect I would be unbearable at 400mg!
One potentially harmful side effect is a rash that can develop. The rash is apparently quite noticeable can last a while and must not be ignored. I developed an unsightly rash on my trunk 4 months into the trial- but after an initial panic it disappeared in approx 24hrs indicating that it was viral or allergy based and not directly connected to the Lamotrigine. There are other considerations for women on the trial such as the affect of the drug on the effectiveness of the contraceptive pill and a woman wanting to have another child could not do so whilst on trial. I have experienced none of the listed side effects.
Personally, I feel that my condition has stabilised although i can't say whether that's due to the drug or not. I think participation in trials has to be within a persons comfort zone. This is within mine but not everyone feels that way and those views have to be respected. I have had no second thoughts about my decision. This is partly due to how I'm feeling, partly due to the excellent monitoring I'm getting at the National and partly due to the lack of alternatives for those of us with SPMS.
Muu

Muu,

What is the purpose of this drug?

gwa

gwa
my non scientific understanding is that the idea behind Lamotrigine is that it will partially block the sodium channels which it is hoped will provide axonal protection. I am now quoting from a MS News Report from the 2006 ECTRIMS conference as to the mechanics of how it is intended to work-

"Exposure of an axon to nitric oxide (NO) (eg. at demyelinated areas) which the axon is conducting an impulse can damage the axon. The cause of the damage may be that NO inhibits mitochondrial activity and therefore slows the production of ATP, a molecule involved in pumping sodium ions out across the cell membrane. An increase in sodium results in a build-up of calcium ions in the cell, and this can eventually kill the neuron."

One thing that I still need to clarify at my next check up is that if there is a partial block of sodium channels whether this will inhibit the pumping out of the damaging sodium as well as the pumping in of it. There may of course be some molecular one way system.....
muu

Muu,

I would also like to find out if this med is supposed to help us regain lost function or if it is an axonal damage slower downer.

How long will your trial last?

gwa

I'm glad I read this thread, I hadn't earlier. Congratulations muu and I wish you the very best in this.

I think participation in trials has to be within a persons comfort zone. This is within mine but not everyone feels that way and those views have to be respected. I have had no second thoughts about my decision.

Absolutely right and I can't imagine anyone faulting you for what you're doing.
Bob

Bob,

Here is an article from the UK MS Society's MS Frontiers conference in 2005 about the trial which MUU is on. It's pretty clear from this and the other presentations that MS is a complex disease involving many mechanisms. Harry Z does these researchers a disservice by suggesting that they are stuck in an 'MS is an auto-immune disease' rut. They've moved well beyond this and are trying to unpick the various strands of this disease. It is highly likely that different therapies will be required to tackle this disease - stopping inflammation / relapses; protecting nerve fibres and cells; and repairing those nerve fibres and cells which have been damaged.

As for 'cancer drugs', the jury is still out but they have shown some promise. Those in the RR phases have seen good results from Campath and Rituxan may well show promise (we await the results of the RR and PP MS trials). The work undertaken by Dr Freedman in Canada (Bone Marrow Transplantation) which uses high powered cancer drugs also looks promising. Cancer drugs can look scary, but so did Richard Pryor in his final years! In Harry's world no-one should take the CRABs because they are useless; Tysabri is expensive and doesn't do much; anti-cancer drugs just shake-up the immune system. Lucky for him that he doesn't have to make such a decision.

As MUU says, it's up to individuals to decide what is in their comfort zone in terms of treatment / trials. I'm convinced that the experts are unpicking this disease and are making progress - it's taken a long time because it is complex and new technology will provide more insights.

Ian

MS Frontiers 2005 - Trials of neuroprotection in MS: present and future

Dr Raj Kapoor from The National Hospital for Neurology and Neurosurgery, London, focused on clinical trials of neuroprotection in MS.

Until recently, it was thought that disability in MS was caused mainly by the gradual loss of the fatty insulating layer of myelin which surrounds nerve fibres (axons), and which allows them to conduct electrical signals. However, we now know that most of the permanent disability in MS occurs because the axons themselves degenerate.

Experience suggests that the current strategy of modifying the immune system may not be able by itself to prevent this axonal degeneration and consequent disability, and that we will need to develop a second strategy, called neuroprotection, to achieve this goal. In order to do so, we will need to identify and to inhibit the mechanisms by which axons are damaged.

Research work has already identified several such mechanisms. For example, our group has shown that axons may be flooded with toxic levels of sodium from the surrounding tissue fluid as a result of inflammation in MS, and that the resulting damage can be prevented by drugs which reduce the entry of sodium. As a result, we have been awarded a grant by the Multiple Sclerosis Society to carry out a clinical trial to test the neuroprotective effects of one of these sodium channel blocking drug, lamotrigine, in people with the secondary progressive form of MS. We will randomize people in the trial to receive treatment either with lamotrigine or with an identical placebo (i.e. dummy) tablet for two years.

We will be able to compare the effect, of lamotrigine with the placebo, on the gradual shrinkage of the brain caused by axonal degeneration. This will be done by carrying out MRI scans at regular intervals. We will also measure the actual levels of disability in the two groups to assess the extent to which the treatment slows down its progression. This is likely to be the first of a number of trials which seek to block axonal degeneration by inhibiting the mechanisms by which the axons are damaged, and which offer new hope of treatments which can prevent people with MS from becoming disabled.

Hi Ian,
Yeah, I'm still not sure if Harry really believes the things he says or if he's purposefully being the devil's advocate in order to make people think.

I just dropped my son off at basketball practice and I was thinking all the way there and back, so intentional or not, Harry is making people think.

Your insight is very good Ian,
Thanks,
Bob

Bob,

My frustration with Harry Z is that there is a lot going on. MUU's trial is just one of many, including a cannaboids trial for those with progressive MS. I'm lucky to have met with some excellent MS researchers in the UK. They are not stuck in a rut or on the payroll of large drugs companies. To prove this, here are two extracts from the e-mails I have received from these researchers:

What I do know is MS is a complex disease and that if it was simply an autoimmune disease it would be much easier to treat than it currently is. I am sure the inflammation is modifying the disease course, but it may prove to be secondary to what is causing the disease.

RESEARCH IS A BIT LIKE A LOTTERY – YOU HAVE TO PLAY AND THEN SPREAD YOUR BETS IN THE HOPE OF HITTING THE JACKPOT. I THINK THE ODDS ARE GETTING BETTER.

The future must be better and the trials of neuro-protective agents strike me as a step in the right direction and hopefully will provide treatment options to those where there is currently none. And buy some time before the therapies to repair damage become available.

Ian

My nurse practioner is a big believer in nontraditional drugs/methods and has worked with me to try some of them. I am currently taking Baclofen, Lyrica and Amytriptiline. I have been on the Lyrica and Amytriptiline since Feb. and my symptoms have shown considerable improvement. My balance problems and my orthostatic hypotension are about 80% better and my headaches have almost completely disappeared. My muscle stiffness has improved to the point where I am once again lifting at nearly full strength and I can run about 3 mile a session. For those of you that have been around this site for awhile, my meds are very similar to those researched and used by Deb (OddDuck) except she used Keppra and Despirimine. I also use Copaxone. I am not advocating these drugs for anyone just stating that I believe they are working for me. That being said, my improvement could be no more than a long overdue remission. I was dx in May of '04 and this has been the only real remission I've had, if in fact that's what it is. She has also used Lamotrigine on some of her patients with some sucess.

Toyoterry
glad that things have settled down for you- and a 3 mile run - I'm green with envy! I look ok walking but picture Dustin Hoffman in Rainmain- thats me running. Oh well. You sound like you're in good hands with your nurse/practioner.
Bob,
thanks, as always, for your support.
gwa,
the trial is for 2 years. The participants did not all start at the same time. t's already been going a year- even tho' I'm only 6 months into it. Do not believe that Lamotrigine is expected to repair just protect but if effective that would be a HUGE advance.
Ian,
thanks for filling in the gaps and keeping the discussion rolling. I fully intend to take you up on your offer of lunch in 2007.
Muu