This Is MS Multiple Sclerosis Community: Knowledge & Support

Muu,

Your comment, "Do not believe that Lamotrigine is expected to repair just protect but if effective that would be a HUGE advance." is given a big "DITTO" by me. Hope it works for you.

Thanks for the research data, Ian. It does sound promising for those of us with SPMS.

gwa

Muu,
Thank you for your detailed reports on your experience with the Lamotrigine trial. I understand that you are not sure if you are taking the real thing or a placebo, but have you gone up to a 400mg dosage yet?
BTW, twelve months on a placebo would be a bummer!

Toyoterry,
Thank you also for reports. It sounds like you are getting some terrific help from your nurse practitioner, especially with lyrica, amytriptyline etc. You mentioned that you tried lamotrigine but stopped because you had reservations. You also mentioned that some of your nurse practitioner's other (MS?) patients had used lamotrigine, with success. Would you know any more, such as dosage, time taken, level/type of success etc?

Thanks and regards,
Phil

Sorry Phil that I don't know any specifics about dosages and such. When she first prescribed it for me she said that it seemed to be helping some of her patients. She prescribed it for my neuropathic pain but I'm not sure if she uses it for other symptoms as well. I'll try to remember to ask her next time I talk to her. As for reservations, I'm something of a hypochondriac when it comes to meds. I thought the pain I was feeling, particularly in my skin, was a possible side effect. As it turns out, I still have the pain and I've been off Lamotrigine for over a year so it was not the drug. One thing that makes this disease so frustrating is trying to distiguish between symptoms and side effects. I've been doing better since early last summer but is it because of the drugs I'm on or just a remission. I hope it's the drugs but I just can't say for sure.
Terry,

Whilst Lamotrigine is presently being trialled in the UK for neuro-protection of MS, I picked up on an MS spasticity website which discusses all the usual suspects (baclofen etc) that lamotrigine can be used as another option for spasticity. Anyone have any experience with this?

Phil

Hello everyone,
Phil- a belated response to an earlier query- yes I am on 400mg of Lamotrigine or placebo as the case may be. I started of at 25mg last June which increased by increments to 400mg over 2/3 months.

Not aware that L being used in connection to spasticity altho have seen some articles (where?) that Botox is also being used for spasticity as well as for bladder treatments (and wrinkles!)

I also want to update you all on an add on a study to the L trial that I've been invited to join. Hopefully I'll have time to post that soon.
Muu

Hello all
just wanted to update you on a recent development. I recieved a letter from the National Hospital in London where I am taking part in the Lamotrigine trial inviting me to participate in an add on study.

The hope is that "this study would provide landmark data on how to monitor MS patients" by monitoring "biomarkers" ie soluble molecules in blood, urine and cerebrospinal fluid. One given example is the oligoclonal band diagnostic marker. The letter continues...

" In the last decade we have developed a panel of markers to look at different aspects of MS pathology. Our markers monitor inflammation, neuronal degeneration including axonal damage and regeneration."

This last word sparked my interest. Reading on...

" It is hoped that in the future patients can have these measured at point of diagnosis and at stages throughout their care to see whether they are stable, whether they have very active disease, or whether they are progressing....and importantly to assess the efficacy of new drugs in MS trials."

"The purpose of this study is to search for a simple way of predicting which subjects with SPMS are more likely to respond to the putative neuroprotective drug Lamotrigine."

"With Lamotrigine , we are particularly interested to see whether it is able to help regenerate the damaged nerves in MS."

Gwa- you asked me about regeneration a few posts ago.
The issue for me now is whether to agree to participate or not. Currently I'm in the "or not" camp. I'm quite happy to give as much urine and blood (within reason) as they want but I have an absolute phobia of lumbar punctures. To volunteer to have two in a year breaks me out in a cold sweat. I've been through all the arguments in my head about advancing research but as this is not required at this stage for either my diagnosis, acceptance on to or continuing with the lamotrigine trial or indeed any other aspect of my treatment I'm reluctant to agree to it.
Muu

New lamotrigine abstract...



Axonal protection achieved in a model of multiple sclerosis using lamotrigine.

J Neurol. 2006 Dec;253(12):1542-1551.
Bechtold DA, Miller SJ, Dawson AC, Sun Y, Kapoor R, Berry D, Smith KJ.
Dept. of Clinical Neuroscience, King's College London, Guy's Campus, London, UK, kenneth.smith@kcl.ac.uk.

Axonal degeneration is a major cause of permanent disability in multiple sclerosis (MS). Recent observations from our and other laboratories suggest that sodium accumulation within compromised axons is a key, early step in the degenerative process, and hence that limiting axonal sodium influx may represent a mechanism for axonal protection in MS. Here we assess whether lamotrigine, a sodium channel-blocking agent, is effective in preventing axonal degeneration in an animal model of MS, namely chronic-relapsing experimental autoimmune encephalomyelitis (CR-EAE). When administered from 7 days post-inoculation, lamotrigine provided a small but significant reduction in the neurological deficit present at the termination of the experiments (averaged over three independent experiments; vehicle: 3.5 +/- 2.7; lamotrigine: 2.6 +/- 2.0, P < 0.05) and preserved more functional axons in the spinal cord (measured as mean compound action potential area; vehicle: 31.7 muV.ms +/- 23.0; lamotrigine: 42.9 +/- 27.4, P < 0.05). Histological examination of the thoracic spinal cord (n = 71) revealed that lamotrigine treatment also provided significant protection against axonal degeneration (percentage degeneration in dorsal column; vehicle: 33.5 % +/- 38.5; lamotrigine: 10.4 % +/- 12.5, P < 0.01). The findings suggest that lamotrigine may provide a novel avenue for axonal protection in MS.

Pubmed reference

Muu,

People that put their own lives at risk to participate in clinical trials are very special people. I am sure that I would back out if I had to go through an MRI twice a year.

If you decide to go for it, perhaps you could ask whether an anesthiologist could do your LP's. Let the right people know that you are afraid of the punctures. These doctors do so many a year and my experience with them has been very good. At least I don't dread an LP as much as another MRI.

This sounds like a drug to watch closely. Anything that targets regeneration is at the top of the meds list for me.

Another thing I like about this drug is that it may be able to determine if the current drugs are really working and to what extent. Right now I believe too miuch stock is put into lesions observed using MRI's. It is known that there is ongoing trauma to our gray and white matter and that part of the brain is not being tested, as far as I know.

Also, lesion load and physical symptoms do not correlate, so the observance of new or fewer lesions does not seem to be a good marker for the CRABS in my opinion.


gwa

Am off to see my "new" consultant tomorrow Dr Raj Kapoor at the National Hospital at Queens Square, London. Incidentally he also oversees the Lamotrigine trial which is over a year into its 2 years. Shall ask if there are any interim results available.
Muu

Hi Muu!

I am new here in this forum. I was very interested into your comments on the Lamotrigine study, it seems do be the only drug promising for SPMS.

You said you would see Dr. Kapoor these days, are there any preliminary outcomes? He is the only one in the world performing a clinical study with this drug, I was emailing with the Yale School of Medicine some days ago and they are still at the laboratory stage, but are also very convinced about this approach.

I have seen that one of the exclusion criteria for the study is "severe heat dependent symptoms". Do you know the reason for this? I heavily suffer during these hot summers, but I hope there are no real contraindications for this drug.

Cheerio, Tony

Hello Tony - welcome to the club.
Yes, I did see Dr Kapoor. I asked whether there were any interim results for the drug and was told not. Personally, I think he must have some insight as to how it's going but presumably doesn't want to in any way compromise the trial by revealing anything at this stage. I do have a following up visit next month relating to the trial and another marathon mri and associated tests. I'll see if their response is the same.
I can't remember the heat issue being raised. I'll have a look over the literature they gave me prior to the trial and see what, if anything, I can find. I agree Lamotrigine does sound promising - really any degree of neuroprotection is better than none. All digits crossed.
Muu

Hi Muu,

I have seen this exclusion criterion on ClinicalTrials.gov where you find the whole design of any study, you will most likely know this page. If you could ask Dr. Kapoor about this somewhen you seem him, that would be wonderful!

Tony

Tony,
I wont be seeing Dr Kapoor next month but will ask the research fellows about the heat issue and report back. They are both really clued up so hopefully they can shed some light on the matter.
Muu

I was at the National Hospital yesterday for my marathon mri session and check up. I asked Tony's question relating to heat intolerance and whether that would be a problem if taking Lamotrigine. The answer was that it shouldn't necessarily prevent someone from taking the drug altogether.

The drug is given in steadily increasing dosages over the initial 8 weeks until the upper limit, in my case 400mg daily, is reached. Some patients feel better at a slightly lower dosage and stick to that. It seems to be a try it and see approach tailored to the patient. If heat intolerance is an issue one possibility appears to be to increase the dosage more slowly, monitoring throughout and perhaps settling at a lower dose.

My recollection as to why heat issues may be a problem - Lamotrigine works by closing off some of the sodium channels (which hopefully will serve to protect the axons). This partial closure may also have an impact on the body's own thermostat controls! not a very scientific explanation I know.

I also had a guided tour of my mri scan - yikes!
Muu

Hello Muu!

Thank you so much for asking, that's really interesting and great to hear that heat symptoms will not preveng people generally from taking the drug. It think your non-scientific explanation sounds very logical though! I will see what my professor here in Germany says about all this next week, but there is no research with regard to the sodium channel blockers in Germany, so they will not know very much... If so, I will let you know!

Tony