Stopping Brain shrinkage, new research on statins in MS, MS Trust Annual conference 2013

mstrust annual conference 2013I’m Warwickshire at the MS Trust annual conference! Most impactful new learning so far?

Ok, soon to be published research by Jeremy Chattaway on the use of statins in progressive MS to reduce brain shrinkage.Everybody’s brain shrinks! by 0.2% a year. But for people with MS, the average is 0.6% a year.

This was a phase II trial of Simvastatin, a commonly used drug fro cholesterol ( that’s right, it reduces fat in the bloodstream). It also has ‘profound immunological effects’ and can cross the blood brain barrier ( ie get into the brain)

10-12 years ago this was trialled in relapsing remitting MS, but did not become an accepted treatment. Because secondary progressive MS also has features of inflammation, though in a more slow burning sort of way, it was decided to trial it, at 80mg daily. That’s a high dose, double what a lot of people with high cholesterol might take.

140 people were randomised to take this or a placebo. after 7 years, brain shrinkage in the group taking the drug had halved to 0.3% ( almost the normal rate).

Now I really hate putting my hand up to ask questions at these dos, because it’s really scary, you have to use a mike, everyone looks at you, and some neurologists are very dismissive and make you feel like an idiot in front of all your peers…. but I had to ask

” Do you have any idea what the mode of action is for simvastatin, and is it associated with reduction in saturated fat in the bloodstream, or not?”

With great releif, that was replied with ” Very good question!” .. and the answer that they really don’t know. Could it be “microvascular? a protective effect? or to do with cholesterol? All of this is discussed in the paper, which will be out soon!”

Phew. I hope someone will appreciate my sweat and blushes.

Also in Dr. Chattaway’s presentation was the new research recruiting now for people with 2ndary progressive MS, which I already shared in the post on MS Smart.

Additional understanding for me was the process they did of trawling 30,000 existing drugs that could possibly have form in protecting brain volume or nerves, to come up with the 3 most promising –

  1. Ibudolast, a Japanese asthma drug, which reduced the rate of brain atrophy in people taking it for asthma
  2. Riluzole – a drug that people with Motor Neurone Disease have already been taking for some years which showed that it reduced shrinkage of the spinal cord ( showing that it reduced loss of neurones, and
  3. Amiloride – a well known blood pressure drug in the UK, which blocks calcium channels in the brain, and reduces brain shrinkage.

People who enlist in the research to find out if any of these agents can protect the brain from axonal ( neuronal) loss, and thereby slow or halt progression, will be put on either one of these drugs, or a placebo ( dummy drug) for 2 years, and followed up with the usual clinical assessments, plus about 3 MRIs. There will be centres all over the UK so that you don’t have to travel too far.

Right. Now I’m off to get ready for the fancy dress gala dinner, subject, favourite childhood character. anyone else remember Pippi Longstocking? And later, i will be able to have a bath, with Nobody interrupting me!! More info, plus Photos( but not of the bath) later!

APS Therapy for pain, pilot study

APS Therapy update; our first results for people with pain

APS effective for pain chart

At the MS Therapy Centre, we are trialling a new electrical treatment for pain, called APS Therapy (See previous issues for an explanation!)

Here’s a round-up of our results so far.
Some people have completed a course of treatment, some are ongoing, and some have only just started and had a few sessions. We are working hard to make sure we collect better data in future so we can answer more questions. We used the ‘Visual analogue pain scale’ which measures pain out of 10, with 0 being ‘no pain’ and 10 being ‘the worst possible pain’

Neuropathic pain in limb:  7/10 down to pain free; complete pain relief which lasts 4-5 days, but appears to need long term treatment as comes back after this time.

Neuropathic pain in the feet  and feeling  ‘like walking on hot sand’, constant, 6-7/10 down to 3-4/10 in 3 weeks, hot sand feeling down to ‘not very often’ and improvement in blue-ish discolouration due to poor circulation..

Hip pain 6/10 constantly, complete relief since the first week, has not returned, and a decrease in neuropathic pain in the leg from 4/10 to 2/10 in 3 weeks.

Back pain, 8-9/10, worse on exercise, down to pain-free, 2-3/10 on exercise. Treated x 2 weekly for 6 weeks. Has not returned, 1 month after end of treatment. Leg pain, ‘pounding, throbbing’, 8/10, down to pain-free, has started to creep back since recent sensory relapse.

Long term shoulder pain, 2-7/10 to ‘much better’ but has since had to stop treatment for personal reasons.

Hip pain 10/10 plus, no benefit. This could be because there’s a serious problem that needs attending to underlying the pain, or because high doses of opiate painkillers make the treatment less effective. We’ll be helping this person get the right investigations and treatment, and maybe try again later.

Arm pain, possibly radiating from shoulder, no cause detected by GP, 2-3/10 with episodes of stabbing pain 5-6 x a week at 10/10; down to 1& half/10, no episodes of stabbing pain after 2 weeks of treatment

Headaches, constant, 7/10 down to pain-free, and back pain 7/10, down to 1/10, plus complete relief from insomnia.

Chronic pelvic pain, 2-4/10 normally, 7-8/10 when bad, happening less frequently, tramadol usage has dropped from daily to 2-3 x a week, now reducing Amitryptilline also.

Hip pain, 8&1/2 /10, very severe, ‘sickening’, no change, although improvements in sleep pattern. We are helping this person get investigations carried out.

Hip pain, 7/10, 8/10 when worst, down to 4/10 after 3 treatments, but also had deep physio manipulation prior to starting!

Severe muscle spasm and spasticity, no change after 12 weeks +

MS fatigue; no change

MS fatigue; no change

Headaches, 4-6/10, 9/10 when worst, 2-3 x a week, for most of life, worse since starting Rebif, down to pain-free; has had one headache since starting therapy, when had not drunk enough water. Has not taken regular painkillers for weeks. Back pain, 4-6/10, 7-8/10 when bad, down to 3/10. Stopped Naproxen and Co-codamol use. Knee pain (which was unreported, as forgot about it) has disappeared. Much more energy, staying up past bedtime, cleaning.

People who’ve just started:

‘Squeezing’ altered sensation feeling, 7/10, 9/10 when worst, no change yet after 4 sessions; muscular pain in shoulder blade area, 4/10, 8/10 when worst, down to 2/10 after 4 sessions.

Shooting, stabbing, intermittent pain in knees, 5-10 -11/10 down to 4/10 max after approx 2 weeks

Tennis elbow, 8/10, worst 10/10, now 6/10, worst 8/10, significantly improved range of motion and no sleep disturbance due to pain, after one week’s treatment ( and also carrying on with Bowen treatment)

So in summary, in our study so far, 18 people have used the APS Therapy at the Centre, 17 with MS and one member of staff. 2 tried APS for fatigue, and 1 for spasticity, and disappointingly, these conditions have not experienced a significant benefit to date.

15 people used APS Therapy for pain. Of these, 13 have felt a significant reduction in pain, and 2 have not. 2 also report a significant increase in energy. Of the people with pain, 5 have achieved pain-free. Of these, 2 people’s pain has not come back since completing the course, one needs to maintain therapy once a week, and 2 are still completing their course of treatment.

We’re delighted that Denise, who many of you will know already from the Gym, has now been employed 3 days a week to also help run this project and help people to use the APS machines at the Beds and Northants MS Therapy Centre. If you are having a problem with pain, you can come and see me (Miranda) for a full pain assessment. If APS Therapy seems like an appropriate course of action and you:

a) Can get in 3 x a week ideally; twice if necessary, and

b) Can drink 1&1/2 litres of water a day, and

c) Have none of the following: heart attack, deep vein thrombosis, stroke or pulmonary embolus in the past 3 months, cancer, epilepsy, or pregnancy.

I will refer you on to Denise, to start a 6 week treatment plan. For some pain, APS Therapy may be able to completely and permanently resolve the problem. For some people it may not help at all, and for others, it may significantly reduce or resolve the pain, but need to be continued to keep getting the effect. In those cases we can help you to purchase your own machine direct from the manufacturers if you wish, and also to apply for charitable funding if money is a problem.

It’s very exciting to be working with such a new, drug-free treatment. We intend to start helping people to review their medication once they get a good result, with a view to reducing pain medication.

APS chart, pain, fatigue, spasticity

APS chart, percentage pain-free