I’m guessing that very few of the folk who used to follow my MS blog would have continued dropping in because I gave up posting quite some time back. February 11 in fact, I just noticed. If you have dropped in, I have been having a lovely time in ‘denial’ as much as possible and not giving MS too much attention. Recently, however, the needy little bastard that MS can be has been shouting, “Look at me! Look at me!”
Following my neuro appointment yesterday I have decided to keep a bit of an MS ‘diary’ – I could scribble it in a book, but I thought I might as well do it here. I will try and keep it cheery but be warned there may be mention of bodily dysfunction that one would not normally discuss in polite company.
Before telling you why the need for a diary, the top photo is a lovely pic Laura sent last weekend from Fisherman’s Wharf in San Francisco, the first stop on her journey of Around the World in 80 Days for her Gap Year.
But back to me! I have been taking a new DMD (Disease Modifying Drug) called Tecfidera for five months, pretty much since if became available. It is an oral drug, taken morning and night – that in itself beats the hell out of intra-muscular injections or monthly hospital infusions with a slight chance of death through a rare brain disease. The side effects of Tecfidera are occasional ‘flushing’ and diarrhoea, which also results in flushing. While irritating, these are far more desirable and manageable than death.
I’m having trouble posting pics in the body of the copy – will try to sort that tomorrow – in the pic of Laura with the two guys, that’s her second stop, New York City. They are two new Long Island friends helping her get to Times Square.
Anyway, Dr Noel says there is a new treatment now approved (but not through the PBS) that has come from chronic lymphocytic leukaemia stem cell research. He kindly wrote it down for me so I could Google it against his good advice – Alemtuzumab. Rolls off the tongue like sand. It has also been named Lemtrada, according to Google. I had heard a bit about this treatment – it is an infusion, done over five days, once only, followed by a three day infusion 12 months later. That’s it. And it has been getting some good results. To impress Dr Noel I commented that I believed that it basically re-boots the immune system and he replied, “Totally the opposite – it buggers it completely”. Oh. Yes, it pretty much strips the immune system bare and the ‘re-booting’ happens over the next eight years. Noel said that there are risks and side effects, mainly a low platelet count and thyroid problems that can also be treated, and no one knows the long term effects. I know why he prescribed non-Googling…
“Alemtuzumab has been associated with infusion-related events including hypotension, rigors, fever, shortness of breath, bronchospasm, chills, and/or rash. In post-marketing reports, the following serious infusion-related events were reported: syncope, pulmonary infiltrates, ARDS, respiratory arrest, cardiac arrhythmias, myocardial infarction and cardiac arrest. The cardiac adverse events have resulted in death in some cases.”
Oh! When Laura was in NYC as part of her exchange year she got a photo with two of New York’s finest policemen, wearing one of their hats. She bumped into another one and captioned on FB… “To Mum & Dad, apparently the drinking age in New York isn’t 18…”
Back to Dr Noel – he reckons the Tecfidera could still be finding its place in my immune system and suggests we stay on that for another six months and monitor for any changes before we take the giant leap into infusion land (they can do that at his main hospital, The Wesley in Brisbane). In the last five months we have noticed more weakness in my left leg and hand plus an increase in what they call ‘intentional tremor’ which means I now write like a doctor and can’t pick up pieces of confetti.
I was pleased to see that the new NSW Premier, Mike Baird, is looking at legalising marijuana use for terminally ill cancer patients. A step in the right direction that may assist people with MS one day. It really helps lots of MSers I know in the US. I have decided not to grow my own wee crop for now because I want to hold what cognitive function I have and because I don’t have spasticity that requires medication (weed works as a relaxant to improve sleep and lessen spasms and spasticity.
Speaking which, Laura bumped into a fellow MSer in New York and donated a dollar to his cause. Girl with a good heart. “She posted, I just love New York!” And I will try to keep posting, too.