Having had two symptoms (attacks or episodes) that indicated a neurological issue, and then following the results of an MRI, I was diagnosed as having MS.
This diagnosis around 2nd March 2012, took place approximately 7-8 months after the first attack.
Subsequently, I'd had discussion with the neurologists about drug treaments, but had been given a couple of weeks to think things over as the initial results from the lumbar puncture were not yet in.
The "glass half-full" news, was that my symptoms had been very mild and were sensory only. This mean I had not experienced any difficulties with movement nor spasticity. And since everything was so mild, and because I was already of a quite senior age (MS normally being diagnosed between the ages of 20-40), it meant based on normal life expectancy, I'm not likely to be any more inconvenienced by MS than I would be for normal advanced age in the future (this is by following average disease progression trends).
As mentioned, it's now the sixth post, the previous ones covering the original symptoms and stay in hospital, as well as the first two (out of three) doses of corticosteroids that work as anti-inflammatories.
They were starting to work and as a result, the swelling that had caused the lesion I had affecting the
trigeminal nerve (resulting in the facial numbness), was now easing. This meant I was re-gaining the sensory sensitivity and the numbness I'd experienced was slowly fading away.
Some side effects of the corticosteroids, and ones I hadn't been warned of, were palpitations and also facial redness.
This came as a mild surprise when I came home and about an hour later, face beetroot red and a hot flush later, I thought I might be having a heart attack.
So, instead of settling down, I ended up researching the role of these drugs on subsequent side effects.
The same (ok, I can say mild now) mild symptoms happened a few times over that Saturday and the following 2-3 days and are quite common.
I was now back home after a day and night in the hospital - time to take stock and do a power of reading and research.
I'd been in touch also with my work who'd been quite understanding and put me under no pressure at all to return to work before I was ready. I am a UK citizen but I am currently working in Spain on behalf of my UK employers (NATS - http://www.nats.co.uk/). By the time I return to the UK, I will have been living and working in Spain for four years, during which time, my wife and I have also had a family (Kian and Ava).
It was now Saturday - I'd had two days to consider the new about MS. As I mentioned to my sister, Lee who had come over that day (pretty much dropping everything to do so, cheers), I felt as if I was an observer to myself. It seemed like I had been sitting in the back seat of the car whilst watching another
version of myself doing the driving.
I felt it was now time to read up on what MS was, particularly RRMS (Relapsing Remitting Multiple Sclerosis), how it might be triggered, treated (or at least managed) and long term prospects.
First up, just to confirm the drug based approach as suggested by my neurologist, I decided to look into Interferon and also if it was seen as a supported (prescription) medication in the UK.
Online Research - Not so NICE?
Having been told by the Consultant Neurologist at the Ruber International Hospital in Madrid that the current standard treatment for RRMS is Interferon beta 1b, I decided to investigate the clinical practices and proposals for drug therapy in the United Kingdom where, in 7 months time, I would be living again.
This means it would be a good move (I think) to investigate if the same drug approach is used in the United Kingdom.
In the UK, NICE is a department that publishes 'guidelines' for medical authorities. If NICE say a drug therapy or disease approach is recommended (cost effective equations based on Quality Of Year of Life or QALY), then NICE issue a guideline to health authorities that these are recommended drugs to be made available to patients.
Here is a statement from their website (correct as of 17 April 2012)
Recommendations on drugsOf course, if NICE do not recommend, or are tardy in finalising their recommendations, then it falls to the patient to either completely or partially self-fund the treatment, based on the QALY equation, because without the NICE guidelines, Health Authorities (I understand) are not likely to provide the treatment at all.
NICE's technology appraisals programme is designed to ensure that people across England and Wales have equal access to new and existing medicines that are deemed clinically and cost effective, reducing the risk of a postcode lottery of care.
Moving on then, I searched the NICE website for details about Interferon beta 1b treatment for Multiple Sclerosis. Again, the following quote taken directly from their website says:
"Technology appraisals, TA32 - Issued: January 2002and
NICE has very carefully considered the evidence about the effectiveness of these drugs in people with MS and how much they cost."
"After considering all of the evidence, including the views and experiences of patients, NICE has issued the following advice:
A recommendation to use these medicines (beta interferon and glatiramer acetate) cannot, presently, be justified, taking both benefits and costs into account."
"The Department of Health and the National Assembly for Wales, along with the manufacturers of the beta interferon products and glatiramer acetate, have been asked to consider what action could be taken so that the NHS could obtain these drugs in a way that would be cost effective
Note: The planned review date for this guidance was November 2004. In December 2004, NICE proposed that the review be deferred until November 2006, pending data from the Department of Health risk sharing scheme. Following consultation, NICE has decided to proceed with this proposal."
As I stated above, this is from their website as of 17th April 2012.
In summary then, neither of the two most commonly recommended or used drugs in the world for RRMS appear to be endorsed for cost-effective reasons in the UK (actually, England and Wales - I think Scotland pays heed to the guidelines but is not controlled by NICE in quite the same way).
I've subsequently heard that Interferon IS used, but it's down to individual Health Trusts - however, at the time of reading the NICE recommendation to NOT recommend Interferon, struck me as a bit of mental blow.
Remember, at this time, recently diagnosed and feeling quite vulnerable and I suppose, not a little anxious about what the future would bring, finding out that the proposed drug wasn't even supported in the UK was a bit of a shock.
However, all clouds have a silver lining.
Next Post? yes i think so...
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