Copaxone changes

Thanks to a comment from HoneysuckleB on a recent post, I rang my MS nursing team at big-city hospital to find out if I could switch from the daily Copaxone injections to the three-times-a-week version.

The reasoning behind this is a fairly straightforward one: rather pathetically, I’m dependent on my Outlook calendar at work to remind me to inject.

It actually has a dual purpose. I currently leave work at 3pm, so I set the reminder for then just so I know it’s time to go home. I’ll then ‘snooze’ this reminder for an hour or two after I’ve left the office. When it pings up at the start of the next day, I’ll pop the injection while I’m waiting for the day to start and the kettle to boil.

It’s a seemingly faultless system. It falls down, of course, on the days I’m not at work.

I don’t know how crap my memory is. I like to think I’m still OK but surely it says something when you can take an injection every day at the same time for five days of the week and then completely forget about it for the other two.

And let’s not forget that when I cook at home, make a cup of tea or want to put some marge on my toast in the morning, I have to move that box of Copaxone to one side to reach various items in the fridge.

It couldn’t be more in-my-face, but I still forget to take it.

Anyway, the MS nurses said yes, no problem, and they’re altering my prescription accordingly.

If I were to faultlessly take my medication, the daily shots should deliver 140mg of medication into my system. The three-times-a-week shots will deliver 120mg (with no loss of effectiveness).

I knew the new dosage has been available in the States for a while, but hadn’t realised it had come over here until HoneysuckleB’s comment, so thank you HoneysuckleB!

The sting

Well, I’ve been taking Copaxone (Glatiramer Acetate) for about a week now. I administered my first injection under the gaze of my wonderful MS nurse last Monday.

When I was on Rebif I didn’t really inject into my arm or leg, favouring the fattier parts of my anatomy. It has been my arse and my belly that have borne the brunt over the years, frankly, and as such, I am only now, months later, starting to lose the red patches below my navel.

Injecting with Copaxone however is a more serious prospect in terms of injection site reactions. You really do need to set up a rota of sites to pierce as sustained injecting into one area can cause the destruction of local tissue – quoting my newly copaxone-free friend: “You don’t really think about your ass till it’s kinda disappeared.”

It’s particularly important as my injections are now part of a daily regime rather than being a three-times-a-week occurence.

The thing they don’t tell you is how much it HURTS…

“Yeah, it’s like a bee sting,” smiled my nurse, breezily. “I thought I’d tell you AFTER you’d injected.”

Bloody hell!

I felt like my daughters might have felt after they’d walked a mile, on a promise, to the local ice cream factory and found the little hatch had shut early.

It took about an hour for me to be able to bend my arm again.

I asked my friend if the pain got better over time. “Maybe a little,” she lied.

To be fair, the arm is the worst. I can shrug off the pain in all the other areas, but with the arms, I can’t even shrug. It’s like those “dead-arms” we used to administer to each other as an endurance style contest at secondary school… bruised and pummelled limbs hanging weakly at our sides to the puzzlement of our teachers as we entered each lesson.

The plus side is that a daily injection is easier to remember than a Monday, Wednesday, Friday injection. Particularly if you have trouble remembering what day of the week it is or how old you are, like I do.

A tip I learnt off YouTube is to take one of those Sharpie pens and write the days of the week and the injection site on each of the packets. So it might say “Monday left bum,” “Tuesday left leg,” “Wednesday right leg” etc. I also now know a new spot on my legs as well (top rather than side) so that will break things up rather nicely.

Today is “Tuesday left arm” though, so not looking forward to that, particularly as yesterday it was “Monday right arm.” I’m gonna have to rethink my rota, I reckon.

Anyway, in six months time I will have built up enough Copaxone in my system for it to start properly working. It’s the best option for me right now. I’ll keep my ears to the ground with any new developments in disease modifying treatments, and I can always ditch and switch if anything better becomes available.

New medication

Well, I’ve made the big decision and I’ve had confirmation from my nursing team. I will be starting a course of Glatiramer Acetate (Copaxone) soon.

I had joined a number of social media groups to get the low down on real experiences of the different medications open to me and the copaxone route seemed to be the most suited to my needs.

More details as I get them…

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.

Making lemonade #2

Way back when I started secondary school, a rumour went around that all the boys would need a medical during the first term. This would involve a procedure where a nurse would hold our testicles while we coughed.

This never happened, of course, but a part of me believed it. It made the eleven year old me unduly anxious to say the least.

I often think about how cool it would be to be some sort of guardian angel to my awkward, shy, younger self. I’d put a supportive arm around my own shoulders and whisper something into my ear… some mature advice to make me feel better: “That thing about a nurse holding your bollocks? It won’t happen. It’s utter nonsense… ha ha! Just you wait another 30 years.”

Fast forward to the other week…

I’ve learnt a new skill!

It involves passing a foot long length of tubing into the most sensitive and private part of my anatomy.

The first time I did it, I had my trousers round my ankles, while a nurse (female), who I’d met for the first time barely 20 minutes previously, looked on, rubbing my shoulder in a supportive, encouraging manner.

Yes, I have to catheterise myself at least twice a day, now, due to the fact that I retain approximately one pint (500ml) of urine in my bladder, even after visiting the loo. The urology nurse who came to visit told me that anyone who regularly holds 400ml of urine is advised to catheterise (the MS Trust say anyone holding more than 100ml), so I fall (un)comfortably into that bracket.

I’ll be performing this procedure for approximately… hmmm… how many months? Oh wait!… The rest of my bloody life!

I’ll be honest with you. The first few days you try it, it isn’t easy to do. I winced each time at the prospect of threading the tube into such a seemingly tight space. I also had to change the type of catheters I was using as the initial bendy latex ones were causing too much pain and I was finding blood in my urine. Plus I found them as easy to hold as a live eel. But two weeks on, with stiffer, differently lubricated catheters, it’s a lot better, and I feel a lot calmer doing it.

So has it worked? Do I visit the loo less urgently? Do I go less often? Do I finally have an unbroken night’s sleep?

The answer to that is yes and no.

I can’t describe how crestfallen I felt on the first night. After painfully tubing myself before going to bed, I woke up at 2am, 4am, and then 6am desperate for the loo. It was as if nothing had changed. Nothing except for the fact that I now had to perform some sort of low level surgery on myself.

After a few nights of this, a phonecall to my MS nurse and a visit to the GP meant that I’ve started taking solifenacin tablets to relax the bladder muscle and reduce the urge to pass water.

It’s early days still, but I mostly wake up with my bladder just once a night now (and I catheterise when I do). During the working day I might make a trip to the loo, two or even three times in my six hour shift, instead of three times an hour, so to me, it’s an unbelievable turnaround. In the daytime I couldn’t be happier. I’m getting to be friends with my bladder again and it turns out he’s quite a nice guy.

There’s still the element of waking halfway through the night to contend with, though. I wonder if part of it is to do with learned behaviour. Perhaps my body automatically wakes up at regular points during the night and now needs to be retrained. I’ve tried to combat the night time loo visits by cutting down massively on the amount of caffeine I take in and the drink of water I have with my evening meal is often the last liquid to pass my lips every day.

It’s early days on the pills, though. Tomorrow marks one week of taking them and the GP told me it takes about seven days for them to kick in (the MS Trust says up to four weeks), so we’ll see how it goes. I don’t remember the last time I managed to sleep through the night without waking. The day I finally do, I’ll be partying.

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.