Important news if you are on, or considering the new oral drug Tecfidera ( also known as BG12). On 22nd October Biogen Idec reported the first case of progressive multifocal leukoencephalopathy (PML) in a Tecfidera patient, who had been part of a clinical trial and was taking the drug for 4-1/2 years. PML is the rare but potentially fatal brain infection that is a serious possible side-effect of Tysabri, but until now had not been reported in people who had only taken an oral medication. 11 people taking Fingolimod have had PML; 10 of these had previously been on tysabri, and one is considered to have had PML before commencing fingolimod.
If you are on Tecfidera, the advice is not to panic. This patient, who died of pneumonia, had been suffering severe lymphopenia, a low white blood cell condition, for more than three years, which Biogen said was a risk factor for developing PML. A more in depth discussion about this is on neurologist Gavin Gionvannoni’s blog, here:
Now here’s the More …
Not to be confused with personal budgets (!) which means you get to control the money for any social care, a Personal Health Budget is a one-off payment that can be used to pay for something that helps you in your life with a long term health condition. It could be something like an air conditioning unit, or piece of medical equipment, or it could pay for regular therapy or exercise classes, transport, or help to remain independent or at home. If you receive Continuing Health Care -( extra money to support your health if you have complex needs which are rapidly changing and you need nursing type interventions fairly often), then you now have the right to have a Personal Health Budget. There’s a lot of talk about how other people with long term conditions now have a right to ask for one – but sadly neither Bedfordshire or Northamptonshire are offering these to people with MS at this stage.
On a lighter note,
New and more effective treatments are becoming available for overactive bladder. If you’ve been through all the firstline treatments and are still suffering from urinary urgency, ask about Mirabegron, which is having great effects for some people.
Also becoming more easily available on the NHS is Tibial Nerve Stimulation, a treatment that developed from acupuncture, where a course of treatment using a tiny needle, inserted just behind the ankle, can calm down both an overactive bladder, and sometimes also be very effective for bowel urgency.
Another area that affects some people with MS, where advances are being made, is in treatments for Trigeminal neuralgia. If you have been plagued for a long time by this very painful problem, have a look at Sterotactic radiosurgery on the NHS choices website, or ask to talk to someone about this. http://www.nhs.uk/Conditions/Trigeminal-neuralgia/Pages/Treatment.aspx
Reasons to be cheerful – part 3 … wish I could sing it like Ian Dury…
Following the success of APS Therapy for many people’s painful conditions, and noticing that many people have reported other unexpected benefits, we are now opening APS therapy at the Bedford MS Therapy Centre up for other problems that members may wish to use it for. The most noticeable and frequent ‘other’ benefit is improved length and quality of sleep, so for sleep problems. Some people, though not all, report improvements in energy, so; fatigue. Significantly, 3 people have reported that they were having recurrent urinary tract infections prior to starting APS, which resolve when using it, so; recurrent urinary tract infections.
Anyone wishing to discuss this, please make an appointment to see Miranda or Emma.
and Part 4 –
Training going on apace all over the place! I’m doing the first presentation and training course for practitioners from the MS Centre on Saturday 1st Nov
Ovecoming MS evidence based approach to stabilising MS as per http://www.overcomingms.org in Birmingham on 6th November
Updating modern matrons on MS on 14th December, and, nudged by recent bad experiences one of our members recently had in hospital, Emma and I will be offering MS updates for hospital staff, and instigating working with hospital staff to improve the ‘pathway’ – ie -what happens to a person with MS when they interact with the NHS in Bedfordshire.
Also, if you don’t follow my online blog, you will have missed me banging on again about the importance of gut health etc. It’s all coming together, so watch this space for the ultimate plan!
Busy times! Keep well 🙂