Blitzkrieg post-script

Well, everything was a bit miserable at the end of my last post so apologies for that.

I’m a week or two further along the line now and I’ve been applying the patches to their designated places in the literature and experimenting with each zone.

I’ve found that the only place that works is my upper arms. I just have to find out how I can rotate the patches so I’m not sticking them in the same place every 14 days (space is limited), as all the literature says “do not stick the patch in the same place in a 14 day period,” without explaining why – will my arm fall off?

Anyway, it’s 7 days of patches just above the left elbow, followed by 7 days above the right. After that it’ll be 7 days just below each shoulder (on the non-hairy bits).

Sleep is blissful again, but I’ve found that I’m very weak in the legs when I wake up, and fairly weak during the day so I’m thinking about referring myself to the physio again.

Blitzkrieg

One of the things my brand new neurologist did for me when I met him earlier this year is confirm my diagnosis of restless legs syndrome (RLS). It’s something that I’ve been wondering about, on and off, pretty much since diagnosis, so it’s ‘nice’ to have it confirmed.

It’s not a symptom of MS, but there’s a higher incidence among MS patients than the general population.

In fact, what I assumed was leg cramps associated with the MS is actually RLS.

Where it has been an inconvenience before, it has suddenly decided to ramp things up a notch or two. Instead of an uncomfortable build-up of tension in a calf muscle followed by my leg clenching (bad enough), the build-up is leading to a muscle explosion. Don’t forget that, along with most others with the condition, this happens in the early hours of the morning.

It really impacts on my quality of life, and on Mrs Dave’s too when I wake her up with it.

Over the years, I’ve tried different meds (Gabapentin, Amitriptyline, Baclofen) to smooth it out but been flattened by the side effects instead. I ended up ditching Baclofen last year after increasing the dosage to a level that I really wasn’t comfortable with before the initially calmed legs started playing up again.

The last ditch attempt to do something about it came in the last week or so when I tried rotigotine patches that the neuro had suggested. At a higher dose they’re normally prescribed for Parkinsons patients, so they’re a pretty serious drug.

My word they worked!…

…they worked for three whole days. For three days I was restless leg free.

Bliss!

I mean, I woke up in the morning feeling nauseous and headachey as side-effects of the rotigotine, but that’s still heavenly compared to the daily blitzkrieg of RLS.

I could still feel that something wasn’t quite right; there was still a little bit of tension build-up, but not enough to cause distress or explode in a massive leg spasm, more like a stiff leg. But then, after sitting down yesterday evening to watch TV, it returned – bang! – out of the blue.

I wondered if it was a one-off and made sure to do some stretches before bed, but it came back with a vengeance at 2am.

It feels a little bit like I’ve kidnapped my neighbour’s barking dog and dumped it on the far side of town – just far enough to hear it at night in the distance – and now it’s found its way back home.

So I’m feeling quite glum.

My glumness has been compounded by restless leg message boards which state that it’s a common occurrence with this disease. It gets blasted with medication and then decides to go “f**k you! – I’ll show you what happens when you try to fight me” and then untangles its way out of the medicinal straightjacket you tried to put it in.

Restless legs can be so distracting that I’ve even had fantasies of blowing my head off with a shotgun when it flares up at the end of the day when I feel fatigued. Thank crikey for British gun laws as these aren’t light-hearted fantasies in any shape or form at all. The rotigotine prescription is pretty much the final straw medicine-wise, as far as I can see.

So what can I do?

Before the patches, I’d called in on Holland & Barrett, after a discussion with the MS nurse, to see if CBD oil supplements and magnesium tablets might help (as suggested by some on MS message boards). They didn’t, but the CBD oil has helped a lot with balance and leg strength, to the extent that I really notice if I forget to take it.

So I’ve been down to Holland & Barrett again and I’ve stocked up on Vitamin D, because it’s MS innit? And we all know of the potential link between MS and vitamin D, don’t we? I’ve also bought some B12 tablets, primarily because I haven’t eaten red meat for 30 years and I think I probably need to supplement my diet with this, anyway.

I’m not giving up on the rotigotine yet. I’m going to see out the course of this set of patches before making my mind up, but as I’ve been typing this my right calf muscle hasbeen jumping.

Carbon brainprint

I’m quite happy with the fact that, as a family of four (six if you include Fluffles and Fudge our guinea pigs), we’re pretty good at recycling. Our youngest even has the job title of Recycling Officer to encourage her to weed out things that could be added to our recyclable waste.

On top of the fortnightly ‘black bin’ collection, there’s a fortnightly ‘blue bin’ collection for the usual recyclable materials and a ‘green bin’ collection for garden waste, which includes guinea pig bedding and poop.

I also have an allotment, so a lot of raw vegetable kitchen waste and cardboard gets added to a caddy and taken to the compost heap. I re-use our jam jars for my home made jams (rhubarb jam currently in production), before they’re added to the glass recycling.

Every regular black bin collection day, our landfill waste fills only about half a bin, which I think is not bad for a family of four (six).

It pains me, therefore, at the amount of waste having MS generates.

On the bladder front, I use approximately six catheters a day which come in individual hard-plastic screw-top sheaths. These need disposing of, and to do this I have some black granny-scented ‘nappy sacks’, there’s also associated wet wipes and hand gel. The only things I can recycle here are the info leaflets, the plastic bottles the hand gel comes in and the cardboard box that contains the catheters. Also the larger cardboard box and brown paper packing that the cardboard boxes are packed in when they’re delivered. The majority goes to landfill.

Medication-wise, I’m currently injecting Copaxone seven days a week. The syringes are supplied in plastic cases with peelable seals. The seal is somewhere halfway between plastic and paper and is (as far as I know) unrecyclable, so gets sent to landfill. The plastic cases are pretty much the same plastic that supermarkets use for fruit and the like, so they can go in the blue bin, as can the cardboard box the syringes get supplied in and the cardboard box the cardboard box comes in, when it’s dropped off at my GP surgery every month. Although, there’s that many luminous “chillcare” labels and cellophane invoice wrappers attached to this box, I’m unsure how much I’m contaminating the recycling with this when I dispose of it.

Of course, once I’ve done with them, the syringes are popped into a yellow, plastic sharps bin, that I drop off at the GP when it’s full and ask for them to dispose of as medical waste.

The company that supplies my Copaxone, rings me once a month to arrange delivery. Each time they ring I have to make a conscious effort to remember to ask them not to supply a new sharps bin as each one can last several months until full. If I don’t, they supply a new one by default.

Last month I forgot to ask and a new unnecessary one arrived. I’ve added this to what I consider to be my ‘accidental backlog’ because the GP surgery won’t take it and neither will the pharmacy over the road (I’ve asked) and I can’t contemplate chucking it in the bin.

So that’s sharps bins full of used syringes and approximately half a metric tonne of used catheter waste in bags and any other associated medication packs (inter-Botox solifenacin blister packs, for example) either going straight to an incinerator or landfill because of my MS.

So how is all this offset?

The only thing I can think of is that every now and then I work from home as a necessary adjustment, saving 20 miles worth of petrol each time, and the Botox injections have cut down the catheter waste and toilet flushes considerably. Other than that I’m struggling a bit, so I’ll just have to concede that these things are unavoidable and make a concerted effort to reduce waste further in every other aspect of life.

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.