Back to square one

Just like the election of a pope, or the announcement of the winner in some Saturday prime time family entertainment bollocks, I expect you’re all on tenterhooks wondering which disease modifying medication I’m going to plump for.

I don’t know 100%, but here’s my quick notes so far (apologies for superficiality):

Beta Interferon (Rebif, Avonex, Betaferon, etc)

– It’s a no for this as I’ve just given it up after six years. It made me extremely depressed – see Beta Interferon Blues.

Glatiramer Acetate (Copaxone)

– a big possibility. The only things against it are the injection site reactions and the daily injections.

Teriflunomide (Aubagio)

– no greater relapse reduction than copaxone, I think, but with a few extra side effects such as hair loss, gastric nastiness etc

Fingolimod (Gilenya)

– a risk of some heart problems, including arhythmia and in extreme cases cardiac arrest. Also a risk of macular oedema in the eyes. It’s a no to this as I’d rather eliminate the risk completely.

Alemtuzumab (Lemtrada)

– It’s a no to this as it can make you vulnerable to infection. I am married to a teacher and I have two primary school age children. I also spend a lot of time with my hands in the earth on my allotment. I’m exposed to a lot of infections. Also there could be blood clotting and thyroid issues. Once you have the infusion, there’s no going back – it’s not like you can stop taking it.

Natalizumab (Tysabri)

– The brain disease PML is documented among Tysabri users, but thankfully extremely rare. I think I would only be eligible for this if I had extremely active MS anyway. I don’t fancy having infusions every four weeks – they’re not something I can do quickly and easily in the comfort of my own home.

Dimethyl Fumarate (Tecfidera)

– this is my number one choice. In trials it has reduced relapse rates by something like 45-50% and is delivered twice daily in tablet form. There are gastric side effects – nausea, diarhoea etc, but I’ve done my homework and there are coping strategies and the nastiness should wear off over time. Worth a try, I thought. There’s one little drawback: it hasn’t been approved by NICE yet, so isn’t available to NHS patients at the moment. A decision is due in August according to the NICE website.

So there you go… I have more reading to do, but at the moment, it’s Dimethyl Fumarate first, and if that doesn’t work out Glatiramer Acetate is the fall-back.

I had a wobbly moment while talking to my better half last night (lost my balance slightly as I turned round). I think she’s worried that I’m not on any meds at the moment, but I think I would’ve done that anyway. I guess whatever medication I choose doesn’t guarantee a long term improvement in conditions.

Advertisements

The Beta Interferon blues – update

After just two injections I can feel the familiar feelings returning. Aside from the flu-like side effects (achey joints), I have been waking up, not suicidal, but with little enthusiasm for life shall we say?

One phonecall to my MS nurse later and I can announce that Rebif and I are officially no longer an item.

A(nother) month of no drugs should clear my system and by that point I’ll have a meeting with my neurologist about possible alternatives.

Of course, one of those alternatives might be a lower dose of Rebif, because whatever I say about it, it has done its job by keeping relapses at bay.

But I’m going to celebrate tonight. I’m looking forward to being officially completely drug free for the first time in six years with all the benefits that brings.

The Beta Interferon blues.

I’m about to go back on Rebif after a four week trial period of coming off it.

It wouldn’t be the first time I’ve done this, I tend not to take it on holiday (just a hassle) or over Christmas (to give myself a break).

So, have I noticed any changes?

On the negative side, I’ve noticed some extra dizziness and tingling arms and hands. A couple of days ago I woke up with a partially numb right forearm extending into my little finger, which isn’t usual for me.

And that’s it!

Of course I realise that a prolonged period off the meds increases the chance of a relapse etc, so I’m going to start injecting again tonight to see what happens next.

On the positive side (and this is a big one) I’m happier.

Granted, I’ve been on holiday to Florida over the last four weeks which might explain my improved Disneyfied mood, but I haven’t had the usual back to work blues this time.

I can quantify the improved mood as well.

A couple of months before I came off Rebif, my GP asked how I was feeling and handed me a mood questionnaire. The same questionnaire is available on the NHS website. I scored pretty highly: 15 out of 20, I think, which puts me bubbling under ‘severely depressed.’

If I complete the questionnaire now, I score 3 or 4, and I get those for MS related things rather than anything mood related. I might get up a lot in the night, for instance, because of my bladder.

Because my mood has improved, I’ve been eating less and been more energetic. I’m also sleeping better. My wife jokes that she doesn’t know many people who can go on holiday to the States and lose ten pounds, but I did. Ten pounds!! In two weeks!

Among the listed side effects of beta interferon 1a (Rebif and Avonex) is suicidal thoughts and depression, so it will be interesting to see what happens when I resume the meds. I’ll be monitoring my mood score and contacting my MS nurse if my situation changes.

The medication choices have changed in the six years since I was diagnosed, so if the worst comes to the worst I’ll have some research to do.

Anyway, wish me luck. Time to get those syringes ready.

Back to Blighty blues

I’m just back in the UK after a fabulous trip to Australia and Singapore.

I don’t normally do this, but while I was away, I re-evaluated things a little. What I should be doing to make myself happier, more comfortable and healthier.

The thing about Australia is that there are so many similarities to home – the food is similar, they drive on the left, they seem to have a similar dry sense of humour – that the differences really stand out. Here are a few things I noticed:

  • Jogging is a big deal – I counted 100 joggers on one stretch of path within a couple of minutes from my Brisbane hotel window one morning, and everywhere we went, I’d see people in lycra shorts, tracksuit tops etc just going about their business.
  • Families and social life are a big deal. Parks, green spaces, football stadiums, museums – they all have little huts with barbecue equipment underneath for anyone to roll up and insert a coin or raised wooden picnic platforms.
  • Friendliness – I was only there for a couple of weeks, but they couldn’t have been more accommodating. Even the supermarket shelf stackers were matey when pointing out the milk aisle.

Arriving back to the 70s monstrosity of Manchester Airport, the racist cab driver and people with a weary chip on their shoulder, accentuated things even more and brought me back to Blighty with a bump.

It might just be my holiday state of mind and the places we stayed, though, because I’m sure that Australians can be as grumpy, un-fit and unhappy as the best (worst?) of us. With the wide-open spaces and the better weather, though, it certainly seemed that the quality of life down under outstripped anything we enjoy.

It also probably helped, that I’d deliberately left my medication at home.

After popping that first injection when I got back, I felt a familiar weariness in my limbs that wasn’t anything to do with jet lag. My clay legs couldn’t bear to climb the stairs any more times than they had to and the energy I’d had exploring the streets of Singapore had been sapped. A day or so later I had my first big argument with a misbehaving daughter. The idea that I might get up early and start a pre-breakfast jogging routine seemed more and more unlikely.

It’s been a few days since I got back, now. I wisely took a few days off work to get over jet lag and this has been achieved more or less. But the idea that a week ago I was walking through a humid Singapore with a backpack creating a sweaty square on my t-shirt and a camera that immediately fogged up as soon as we’d leave anywhere air-conditioned, seems almost unbelievable. Particularly when you consider that I was striding through the streets with the rest of the family lagging behind and begging me for a rest.

So what can I do back home?

The biggest issues for me that I can do something about, MS-wise, are fatigue and the pain due to muscle spasms in my legs and feet. Of course, the pain feeds the fatigue and most certainly, vice versa.

I don’t take any pain medication as everything I’ve tried so far (gabapentin and amitriptyline) has given me unwanted side effects ranging from more fatigue to hallucinations. I met my wonderful MS nurse before I went away and she suggested that I give pregabalin a try, so I may do that. I guess it works on the same centres of the brain that gabapentin does though (?) so that’s something to bear in mind. She also mentioned a muscle relaxant, but that might be a bit full-on at the moment and could be a last resort.

The fatigue could be combatted by changing from beta interferon to the relatively symptom-free copaxone with the added complication of daily injections (which, perversely, might be easier to remember).

More importantly, a major contributing factor to both of these symptoms is the fact that I spend seven and a half hours of the day sitting at a computer. I don’t want to keep taking sick leave, but I easily could, I feel dreadful at the end of each working day and even worse by the end of the week.

It’s taken a long time to consider my options, and I’ve spent more than a year weighing this up as it’ll inevitably lead to a drop in wages, but I’ve requested a reduction in work hours to a four day week spread over five days. This would effectively give me a six hour working day. When you consider that I work flexible work hours anyway, this would be a dream come true, give me some much needed space and improve the quality of my life no end.

It would give me the space I need to move at a less hectic pace, to drop the kids or pick them up at school without worrying about making up the hours at work. I would be a less grumpy dad in the evenings and I’d have more time to take up some gentle exercise. I could even water my tomatoes and weed my allotment plot before heading to work in the morning. When I think of the possibilities, the image I have is suffused in a golden glow… an ideal world.

I have requested this as a necessary adjustment to my working life under the Equalities Act. I work in a large public sector organisation and everything they have done regarding my MS to date has been exemplary. I even have paid time off to attend meetings of our disabled workers group if I want to (I don’t, but that’s another story).

I made my request two months ago to the day and apart from an occupational health appointment before my holiday, I’ve heard nothing so far. No letter from human resources, no email in the inbox.

It’s a bit disappointing, but I don’t work for the DVLA, so I expect I’ll get results when I chase it up. I’ll look forward to it opening a new chapter in my life. I’ll keep you all posted.

Mild relapse?

I have been on beta interferon (Rebif) for nearly two years now and in that time I haven’t had a relapse.

Or have I?

Beta interferon is supposed to reduce the likelihood of having a relapse and minimise the effects if you do get one. Back in January 2009, when I came off gabapentin, I experienced a temporary worsening of symptoms such as fatigue, pain, heavy legs and one instance of flashy lights in front of my eyes. Was it a minor relapse as the neurologist thought? Was it the side-effects of coming off the gabapentin? Or was it the underfoot rumbles of the MS volcano?

I don’t know. I suspect all three depending on when you ask me.

I have a similar thing going on at the moment. In addition to the usual symptoms, I have had a couple of weeks where I have had a worsening of pain in my arms especially, mild spasticity in my left arm and both feet, hands that feel as if they are gently transporting a cactus as opposed to the usual background tingle, heavy legs again, fatigue, mild vertigo, uncontrolled movements in my calf muscles and last night, definite phosphenes in my right field of vision as I moved my eyes around.

So is it the hot weather?

Is it the MS Monster rolling over in it’s sleep?

Or is it a mild relapse?

I’m not inclined to bother anybody about it until my next yearly meet up with the neuro. My neuro is “running late” this year, apparently. Running late in the sense of he can’t see me in June as would normally happen, but will be able to when his appointments begin again in August, and the 115 people in front of me in the queue have been seen first.

In the meantime, I have restarted taking the amitriptyline.

RIP John Hicklenton

The graphic artist and subject of the documentary “Here’s Johnny!” John Hicklenton died last month in an assisted suicide, taking his MS with him.

As evidenced by the film, he would anthropomorphise his illness – he likened it to both a terrorist and being in a bad relationship. It was reported that prior to his death he had taken some delight in the fact that his MS also had a week or so to live.

I have reported quite recently that I had a few issues around John Hicklenton. By way of explanation, I was disappointed that the documentary showed him refusing beta interferon on the grounds that he would have nothing to do with medication that had “interfere” in it’s name, preferring to take the path of unproven and sometimes discredited alternative medication. Each to their own and all that, it’s just the reason he gave irked me a bit.

Despite these misgivings, the MS world has lost a strong character who fought for the rights of people like me with MS, for which I can only be eternally grateful.

His death was reported on the Forbidden Planet website.

Yearly neurologist meeting – 2009

Yesterday, I saw my neurologist’s registrar – Dr Somebodyorother plus one student.

I had to recap my entire MS history from Day 1 again. I always find it difficult to remember the relapses prior to diagnosis as I didn’t recognise them for what they were at the time.

I did my usual set of tests. I had my reflexes tested, walk/limped from one line of old red tape stuck on the floor to another one and back while he timed me on his iphone, I walked an imaginary tightrope heel to toe, I read the eye chart, I resisted the pulling and pushing of my arms and legs, I had my eyes examined and I watched his finger move from left to right…

…my eyes were flickering…

“Do you want to come and have a look at this?” as he singled out my nystagmus to his student.

…and back again as his finger became two fingers as if he was making bunny ears behind an invisible head.

Back in the consultation room, my regular uber-neurologist breezed in with a student in tow. He flashed me a grin and told me how well I looked (see pet peeves part one) and leant against a bank of xray lightboxes with chin in hand as the registrar recounted his findings. At the mention of nystagmus, he lurched himself upright and held his biro vertically in front of my nose. I dutifully followed the pen, demonstrating my wonky eyes to the second student.

Excuse me while I digress – I have no idea if my nystagmus is a particularly textbook example or whether nystagmus cases are hard to find, but it is always singled out to the accompanying student. So if you are reading this blog and you are a neurology student (or otherwise), it will be quite easy for me to post a film of my oscillating eyes on this blog. If you would like me to do so leave a message in the comments and I will be happy to oblige.

He also noted my intranuclear opthalmoplegia, which his registrar had missed (my left eye moves a bit slower than my right).

Anyway, summarising the meeting:

  • I have only had one minor relapse in the last year, so the medication (Rebif) is working and I can continue with it.
  • An appointment is to be made at my local hospital, so they can try me with prismatic lensed spectacles that may correct my doublevision (no obligation to take them).
  • I have regained my balance. Good old self-healing magical brain. Standing up straight with my eyes closed, I don’t keel over and I can walk heel-to-toe across a room neither of which I could do a year ago.
  • I need an extra blood test to see how my system is coping with the Beta Interferon

“You’re doing very well” grinned my neurologist (cheerfully disregarding my mentioning pain and fatigue) before fielding a couple of my questions, shaking my hand and breezing out again.

So there you have it.

All being well, I won’t see him for another year.

In a rare moment of symmetry, my car passed it’s MOT a day later only needing a headlight adjusting.