Week 68

I hope you all, like me had a very merry Christmas. I don't know about you, but I'm glad it's all over now. What do you mean it's still Christmas? 

My Gilenya never turned up the other day. It was due last Monday, which isn't a problem as I always have a two week surplus when my bi-monthly delivery arrives. I usually get 56 tablets, but last month they sent me just a month's supply with a delivery schedule showing my deliveries a month apart (4 weeks to be precise). The system never got updated, so although the letter and the amount of meds with it said otherwise, they thought I was still on a two monthly delivery schedule. It's all sorted now though. They delivered some more on Christmas Eve. My God, that was boring, wasn't it? Sorry. 

I shared my mobility scooter escapades with you the other week. Since then, I have been given the 'marvellous' news that my wheels are a write off.  " Bollocks!", I replied to my phone when given the news. I have, however, got a happy ending to the story. The owner of the shop that had my now deceased scooter offered to sell me one of theirs for £400. I went to have a look and it is the same make as the one that has gone to silicon heaven. It is bigger, has a greater battery life and is MUCH more comfortable than its predecessor. It is second hand - hence its ridiculously cheap price tag, but it has hardly been used. No tread has worn on the tyres, and if you were to buy one brand new, it would set you back £2000. Having to shell out four hundred quid that side of Christmas certainly wasn't  ideal, but what a bargain! I'm well chuffed. 

My illness seems pretty stable at present. A few niggling issues, but there always is, eh?

The fact that I wasn't given the secondary progressive diagnosis means they won't be withdrawing Gilenya just yet. 

Have a very merry new year, all. I will be. 

Dan

Week 67

I had a clinic appointment with my consultant today (yesterday if you're reading this today. Assuming today is Friday, that is) I think I'll start again...

I had a clinic appointment with my consultant during the week. His name is Professor Giovannoni, and he's a part of the Barts and the London  school of Medicine and Dentistry. 

I was expecting to get my official diagnosis of secondary progressive Multiple sclerosis (SPMS) and subsequently have Gilenya whipped away from me as it isn't considered to be cost effective to SPMSers. I wasn't phased at the thought of this. I've been expecting the diagnosis for 5 or 6 years now. Seriously, that's how long my MS has been progressing now, with the odd relapse here and there. 'Progressively Relapsing' I got told a while back. That's a new one, eh?

I was going to ask him about getting on the Laquinimod trial for people that are SPMS or maybe get some Novantrone (Mitroxantrone), which has been given to people who are borderline secondary progressive, but without that diagnosis, it was pointless asking. I still did though. 

What to do now then? I did what I always do when I see him, I asked him for some Campath! It's name had been changed to Alemtuzumab after a few tweaks and it has since been rebranded as Lemtrada since it got its Food and Drug Agency (FDA) (for the US) and European Medical Licence (EMA) licences. Despite its licence, the National Institute of Health and Care Excellence (NICE) won't touch it with a barge pole over the cost. This decision is under appeal. That means I can't have that either. 

 All this means that until NICE and Genzyme (the makers of Campath) agree on a more suitable price; or until my diagnosis of 'Highly Active Progressively Ralapsing Borderline Secondary Progressive Multiple Sclerosis' turns into 'full blown SPMS, I shall continue to take Gilenya and write this weekly rubbish.

As I've been enjoying acronyms this week, I've got one more for you before I go: HAPRBSPMS. That's my very own self titled MS diagnosis from above. It's what they have told me over the years. Are youHAPRBSPMS too?

Happy Christmas, everyone. 

Dan

Week 66

I spent the whole of last week's blog going on about my mobility scooter adventures that I never actually mentioned the Gilenya related news that I wanted to share with you. But that is me, I'm afraid. 

Had I not bored you with my self indulgent story of crashes etc, I would've told you of the visual fields test they did on my eye. For those that don't know, a visual fields test is when they get you to look into this white box and stare at a black dot. Then very small lights will flash intermittently at different places outside of the black dot. Every time you see a light, you push a button on the clicker thing they give you to hold. 

The lights can be a distance from the black dot, so it's checking how far you can see out of the 'corner of your eye'. I never really understood that saying. Your eyes are spherical, circles don't have corners! Anyway, who cares, back to to point, you repeat the test with the other eye and the results will show what lights you missed and the ones you saw. That is your visual field. 

Mine is okay. My left eye isn't as good as my right eye, but I know that anyway from whenever I do that optician's eye chart, where you read through a row of letters that decreases in size every time you you go to the line beneath. 

They then put in some eye drops to make my pupils dilate so they can look into my macula - a spot in the centre of the retina. Because of the Gilenya treatment, they check it for swelling and whilst they're there, they check the optic nerve for signs of disease activity. They didn't find any lesions or swelling on the nerve and my macula is normal too. 

The consultant also informed me that I don't need glasses either. This news leaves me content that the issues I was experiencing with my eyes in the summer haven't left any permanent damage. Dan likes this. 

If you're taking Gilenya, or considering switching to the medication, I would advise you to keep an eye on your vision (yeah, I know) and report any visual disturbances you may encounter. 

Getting cold in the UK. Keep warm people. 

Dan

Week 65

So what happened to last week's blog, you (probably don't) want to know? Well, I fell off my mobility scooter, head butted the road and gave myself concussion. When I got home, I was too confused to work out how to open my front door (that simple task took me 5 minutes). I could hardly put a coherent sentence together, let alone write a blog! I had flashing lights in front of my eyes anyway, so I have the perfect excuse for not bothering!

I had been to my local mobility shop to order a part I needed for my scooter. Afterwards I made my way back home. I wasn't 20 feet from the shop front door and my scooter just stopped. I had charged the battery the previous night, so I guessed it was something pretty serious. How's that for luck though? Of all the places to break down, it is directly outside a shop that fixes and sells mobility scooters. I think you'll agree, this story has a whiff of irony to it. Is it whiff or wiff? I've never written that word before. Probably should've just said 'smells of irony' and saved all this drivel. I still could, I only have to delete all this as far as the word 'it' and just be done with. I more than likely won't though. I quite like to share my thought processes at the time I am writing. Note to self: You're typing, not writing. 

Anyway, the shop very kindly loaned me one of their scooters and took my one in for repair. I carried off on my journey back home, unhappy that I had an impending bill to pay on the wrong side of Christmas, but relieved at the point that my wheels chose to stop. I had only been talking about my breakdown plans to the bloke in the shop 5 minutes previous. 

Rochford is an old town - it's practically a village - and the pavements are just as old (obviously)

I'm bombing along on the pavement and it's a bit uneven and I bump myself onto the edge of the kerb. The front wheel on the left goes over the edge and that's my lot, I tip into the road. Fortunately (expressed with sarcasm) my head broke the fall. I was shaken and concussed, but no real harm done. It's a busy road. 5 seconds either way and I would've had a head as flat as a pan...pan...panini. 

If there's a lesson to be learnt from this adventure, it's don't leave writing this till Thursday afternoon (like I am right now), oh! 

I'll talk about Gilenya next week, I promise. 

Happy weekend,

Dan

Week 63

I've had a pretty good week compared to most of last week. My MS feels pretty stable. I've only had one fall since I last wrote, so Dan's a happy man. 

Having said that, my fatigue has been present for the last few days. Nowhere near the Pre-Gilenya levels, but it was there nevertheless. The reduction in fatigue is probably my greatest asset (that's not the right word, but you get me) I've gained since taking the medication. 

I didn't wake up this morning until gone 11 o'clock, which is a sign that something isn't quite right. I didn't go to bed late, it was about half past eleven, so a solid 12 hours sleep is a lot more than my body usually needs. I usually sleep right through the night without needing to get up and use the toilet too. 

I do believe that too much sleep is worse for my MS than not enough. If I don't have enough sleep, I spend the day feeling lethargic (kind of stating the obvious there) and I might need to have '40 winks' in the afternoon. But when I'm mobile, my body largely does what I want it to. Compare this to when I have too much sleep and when I get up in the morning, my legs are rigid, and the rest of my body is limp. My balance is non existent, so sitting on the edge of the bed can be troublesome. 

That's how I managed my fall recently. It wasn't a fall as such, but I ended up on the floor, so it counts. I was sitting on the edge of the bed and I couldn't bend my knees, so I just slid down onto the floor. It's like my body seizes up if it is motionless for longer than it should be. 

Unfortunately getting off the floor is far more troublesome than getting onto it!

Happy weekend. 

Dan 

Week 62

When I did the blog last week, I was feeling pretty rubbish. No reason to it, it's just MS, isn't it? We put all of our ailments down to MS, don't we. I blame everything on MS. That nasty headache I had the morning after my recent Guinness binge. That was the MS. When I fell over that night, it wasn't anything to do with my intoxicated state either. You can even blame the third world debt on my demyelinated condition if you like, I do. 

I did seem to pick up slightly at the weekend, but I wasn't tip top. My walking hadn't been great and my balance was rubbish. I know, I know, I had been boozing a bit, but then my bladder became very unpredictable. I know for a fact that alcohol doesn't play a part in my newly found urgency to use the loo. It should do, and many MSers will confirm this, but with me it rarely does. Note to reader: I said 'rarely', not 'never'. 

Hang on a minute. Legs, balance and bladder? I've got a bloody urinary tract infection (UTI)! But how? I take a low dose antibiotics every day as a profilaxus   (I know I've spelt that wrong!).  What I'm trying to say is I take antibiotics as a precautionary measure. They do say prevention is better than a cure. The reason they give them to me daily is because I self catheterise every time I piss - sorry, pass urine. 

UTIs are fairly common if you self catheterise, but personal hygiene is an important factor. I have a 'gentleman's wash' every day and I wash my hands before I pi.. pi...pass urine. My plan isn't fool proof, but it puts your chances of getting bugs in your urethra at an absolute minimum 

As I have antibiotics here anyway, there is no need to take a sample to my Doctor, for them to tell me what I already know and give me something I already have here. I just cut out the middle (wo)man. A couple of days of an extra antibiotic and my bladder is tip top. *smiley face* A small glass of cranberry juice in the morning doesn't go a miss either. 

It's prophylaxis, by the way. 

Happy Friday,

Dan 

Week 61

I haven't mentioned my fatigue for a while. The reason being, I haven't had any. None at all. 

The dreaded dark cloud came back and bit me firmly on the bum yesterday. I've still got it today (Thursday). My whole body feels really weak. So much so, I fell over yesterday. I had a fair bit of difficulty getting back up again. I managed to though. I always do. Well I'd be writing this laying on the floor if I hadn't!

I'm having a day off my legs today. I think I'll use my wheelchair when I go to the 'battleship' (pub) with friends later. We're supposed to be going out for lunch, but I've eaten already, so I think I'll just hit the Guinness instead. Well, why not? It's good for you. It's got iron in it! It also helps you with the psychological battle against MS. When I probably fall over later, I will dismiss MS and put it down to alcohol *pulls smiley face*

I was talking about fatigue, but (as usual) I managed to distract myself, and go off in tangents, culminating in me banging on about my impending exploits with alcohol. 

Staying OFF topic, I am pleased to announce that a lot of alcoholic drinks don't have an adverse effect on my bladder. Fizzy beer does, and cider, but I can drink copious amounts of the 'black stuff' without the urge to wee all the time. The same goes for Jack Daniel's, red wine and believe it or not, vodka and Red Bull. Caffeine AND alcohol in the same glass. Seriously? Now that really doesn't make any sense. 

I'm not condoning alcohol, it should drank responsibly (yeah right), but having MS can cause problems when drinking. I know a few MSers that steer clear of it because of the urgency and regularity created by an alcohol induced irritable bladder. My bladder is over active anyway, although since I started self catheterising, I am now able to hold onto my bladder for a lot longer than when I didn't. 

Anyway, fatigue. I think an early night and a long lay in is required. MS is winning today, as it did yesterday. Tomorrow is another day. 

Stay well, people. 

Dan 

Week 60

I didn't do a blog on Gilenya last week as I didn't have anything new, or of interest for you. I haven't got much more this week to be honest. I wouldn't blame you if you switched off right now. 

A few weeks ago, I renamed this blog. It's now called Pills, Thrills and NO bellyaches. This is referring to the complete lack of side effects I've had (not complaining) since I've been on this medication. See, I said you should've hit that red X in the top right hand corner of the device you're reading this borefest on. 

The last time I looked at my blog statistics, it had  9997 page views. That means that one of you reading this right now is the ten thousandth site visitor. I'm sorry, but there ain't not no prizes or nothing (how many negatives in that apology?) but you can rest assured knowing that I very much appreciate the thought that people do read this rubbish I spout most weeks. 

I hope that my documented side effect free year on Gilenya has helped to alleviate any concerns, fears even, about switching from a time consuming and possibly painful disease modifying treatment to the simple daily tablet. Gilenya does have side effects, but don't ask me, I don't know anything about them. 

Oh, I nearly forgot, I have had a side effect - regular bowels. Add that to the most minimal fatigue I've had in years and better bladder control, I can't see why anybody wouldn't want to stop regularly injecting themselves and pop a pill. 

Happy Friday. 

Dan

Week 58

I spoke last week about my appointment with an ophthalmologist who had absolutely no idea why I was there. I also said my eyes were given a clean bill of health (ish). What I never said, is that the eye doctor said that she was going to to arrange for me to go back and have a 'Visual Fields' test. 

What is a Visual Fields test, you could be wondering? This time, it is me who has 'absolutely no idea' about what this Visual Field test is, but fear not, I shall endeavour to find out what it involves before I publish this diary entry. 

All of these eye tests I've already had had told me one thing - I need glasses. I've known that for a while now, if truth be told. I'll have to 'bite the bullet'' and go and see an optician. 

Wikipedia has very kindly informed me that a visual field test is an eye examination that can detect dysfunction in central and peripheral vision which may be caused by various medical conditions such as glaucoma, stroke, brain tumours or other neurological deficits. Visual field testing can be performed clinically by keeping the subject's gaze fixed while presenting objects at various places within their visual field. Kind of obvious really, eh?

I got the letter with the appointment date, it's on my son's birthday, in November, so that won't be happening then   It'll probably the new year before I get this test now, but to be honest, my concerns have passed, so  I'm seeing it as a routine check up. I shouldn't have said that, should I? No 'eye' puns here.

Stay well. 

Dan 

Week 57

I had my hospital appointment today and they checked out my eyes. They lost the notes as to why I was there, but having bored you all with stories about swollen maculas on more than one occasion I was able to remind them why I was there. All in all, it's been a bit of a cock up. They got my appointment date wrong last week and now I have the Doctor asking me why I was there and what department had referred me to her!

Anyway, I did the usual triangle of letters where each row gets smaller. It was at this point all was agreed all round that I probably need glasses as I am a bit short sighted. Then the Doctor puts some drops in my eyes. One lot to make my pupils dilate, and another to 'make my eyeballs numb'! I assume the patronising old bag meant anaesthetic, but I did turn up for the appointment in a wheelchair and the general public do have a tendency to believe wheelchair users are mentally disabled as well as physically. No wait, she's a professional. She should know better. 

She then looked into my eyes (not lovingly) through some microscope type thing, before giving me the good news: There is no sign of any damage to the myelin surrounding the optic nerves, and there isn't any swelling in or around either eye. Happy days! You was expecting a sarcastic reply to my 'good news' announcement just then, wasn't you?

So where does this leave me with the eye issues I had this summer? It must've been just that. The hot weather. Not optic neuritis and not a Gilenya caused side effect. And that's official 

When I think back, I was getting some neuropathic pain in my legs during the night I the summer too. Not often, but more than one occasion. That too has died right down recently.  It really must be a case of the weather exacerbating my symptoms. 

Any chances of an Indian summer have completely gone now, so all in all, Dan's a happy man. 

Have a great weekend,

Dan

Week 56

Week 56

I have been talking about MS related stuff that's not Gilenya recently. The reason for this is that I don't have much to say about Gilenya. In fact, all I do seem to say about it is that I don't have anything to say about it. 

 Therefore Ive decided to create a second blog. This new one will not be so factual. It will be my ppinion, merely my inane ramblings about MS.  I'm going to call it 'Dan's Inane MS Ramblings'. I promise it will be as boring as the title suggests.  

I will keep this one to talk about Gilenya and possibly other disease modifying drugs. It might become bi-weekly now, I suppose it all depends on what is going on in the world of Gilenya. 

I spoke recently about an issue I was having with my eyes. Was it optic neuritis? Was it being caused by the Gilenya? Was it the hot summer (by the UK's standards)? So many possible factors. My eyesight has settled right down of late, which suggests the problem could be to do with the weather. The heat, the humidity.

I have got an appointment to see an ophthalmologist (eye doctor) next week that I arranged back in July when my eye issues were at their peak. Even though they've settled down, I've kept the appointment. I though it was today (Thursday). I was going to give you an update, but when I checked in, they told me I was a week early! Well, I was not prepared to wait that long, obvs (sorry, but I only wrote that sentance so I could write the word 'obvs.) so I came home and rued the fact that I had got up early for nothing. Whose fault was this admin error ? It certainly wasn't my mistake. Even if it was, I'm not to blame because I've got MS! This has messed my diary entry right up!

What they WILL do is make sure there isn't any Gilenya caused, swelling of the macula (a spot in the centre of the retina). They will also be able to tell me if there is any damage to the myelin around the optic nerve. 

If both of these are okay, it will leave me happy that my troublesome eyes played up because of the humid summer we had and that there is nothing sinister going on just yet. 

I feel like I am just repeating what I've already said, so I'll stop wasting your time (again). Don't blame me though, blame the appointments clerk at Southend hospital: or my MS, you can blame that too. 

Happy Friday

Dan

Week 55

The other week, I mentioned a new drug, potentially for people at a further progressed stage of MS called laquinimod. It is an oral therapy that is made by a company called Active Biotech, who are in partnership with Teva - the company that make Copaxone. 

I'm surprised that the progressive side of MS hasn't already been tapped into by the drug companies. Up until now they've put all their eggs in the 'Relapsing remitting' basket, which from a business sense is wrong. A person with MS will generally spent a lot more of their life in the progressive phase of the illness as opposed to the relapsing remitting one. Therefore, if they can come up with a treatment for primary and secondary progressive MSers, they'll be able to sell their medications to the care trusts for the rest of the patients life, as opposed to the, 5+ years that an MSer will be 'just' relapsing remitting. 

Now that might all sound a bit cynical, but lets be honest, treating MS is BIG business. We are talking a multi-billion pound industry here and all these companies would go bust if they ever did find a cure for MS. 

Take, for example, the company that have the licence to sell Lemtrada. It is called Genzyme and 2011, a French pharmaceutical company called Sanofi bought them for over $20 Billion! That is not a typo. They paid over twenty billion US dollars, or +$20,000,000,000. They won't be looking for a cure anytime soon. 

This is why I believe the Pharmas are only interested in treating MS and certainly not curing it. Our best bet is with all the research into Stem Cells. There's the answer, it's just waiting to be discovered. 

Anyway, that's my conspiracy theory over. I am supposed to be talking about Gilenya, but I have no new news on the current treatment that I am on. The symptom relief I get is stable. Well, bar a few heat related hiccups I've had of late, but in the northern hemisphere, summer is over, so my nagging eye related and neuropathic pain issues have died down too. 

Maybe Teva could trial Copaxone and laquinimod? I'd give it a go. 

Happy Friday, people. 

Dan 

Week 54

Campath 1h, alemtuzumab, Lemtrada - call it whatever you like, has been given approval by the European Commission to be used as a disease modifying treatment within the European Union. Hurrah! This means it can now be presented to the individual European governing bodies for a safety, efficacy and all that assessment. In the UK it's called the National Institute of Health and Clinical Excellence or NICE as the acronym goes(don't ask me where the H went, it's not my acronym, I just use it?). 

Hopefully, it'll get approval pretty quickly as the treatment has far better results than any other drug on the market to date and will make a massive improvement to the lives of many MSers around the globe. 

It is a very aggressive treatment. It kills your immune system, resetting it in the process and then your body will naturally rebuild it, but without its aggressive tendencies that we all know and hate. Obviously, no initial immune system will leave you open to all sorts of viruses and infections, so you have to watch who you socialise with for the first few weeks!

I tried to get my grubby mits on some Campath 4 (or was it 5 or 6) years ago when my hospital signed up for the CARE MS1 and CARE MS2 trials all those years ago. CARE2 was for people that had already tried other treatments and 1 was for those that hadn't yet tried any medication - recently diagnosed. I was on the CARE2 list and just as the trials were about to start, they decided to take part in just the one trial. Yep, you're right, CARE MS1! That's when they offered me Tysabri, which in all honestly was a pretty good 'runners up' prize. 

The Pharmaceutical company that has just been given the license to sell Lemtrada to our primary care trusts (PCTs) is called Genzyme and it is up to them what they charge. Now, they have got research and trials costs to recoup when pricing the treatment, but if they price it too high, our PCTs won't use it. Us mere mortals could be the losers in the potential financial 'Tug of war' battles between 'Big Pharma' in the red corner and Governments/Private Medical Insurance companies in the blue corner. Place your bets...

Seconds out, round one! 

*Ding ding*

Dan

Week 53

Well, I've now started my second year on Gilenya. Lets hope the symptom relief continues for me and the primary care trust will be of the opinion that that is worthwhile for them to continue paying Novartis' extortionate fees for my medication. 

So what's my disease modifying therapy plan for the next 12 months? You're probably asking yourself why am I asking you, but I'm talking to myself really. First sign of madness and all that...

I hope to be kept on Gilenya for as long as possible, but I believe it will be withdrawn at my next Neurology appointment in December. Happy Christmas, Dan!

My neuro is called Professor Giovannoni and he and his team do a research blog that I do regularly read it. It's far more interesting than my feeble effort. 

I recently read one of his entries about a stage 3 drug that's been on trial. The drug in question is called Laquinimod and the best part about it is... wait for it... drum roll... it has been tested on people with  progressive MS! 

Laquinimod is the first drug to show positive results in that helps with disability and brain atrophy (shrinkage). Most disease modifying drugs work by targeting the relapsing and the 

inflammatory side of the illness. It looks like this one is neuroprotective, which in layman's terms means it's aim is preventing progression - something that no other drug has managed to do with me. 

Prof G would like this ORAL therapy to be used alongside other medicines that work against the relapsing remitting side of the illness. This is exciting times for people with ALL types of MS. 

Don't take my word for it, take the scientist's. Link at bottom

Happy Friday,

Dan

http://multiple-sclerosis-research.blogspot.co.uk/2013/09/is-laquinimod-new-wonder-drug-that.html?m=1

Week 52 - A whole bloody year!

I can't believe I've been taken Gilenya for a whole year. Doesn't feel like it. Doesn't time fly when you're having fun!?!

On Wednesday at around 9 o'clock in the morning, I took my 365th tablet of Gilenya *note to self: check calendar to make sure it wasn't a leap year*.

365 tablets at a cost of £42 per pill comes in at a nice fat £15,330 per annum. (Kerching, as they say at Novartis) Wow! So what have the NHS got in return for their investment? In terms of symptom relief, my main benefit is, and continues to be a large reduction in fatigue. I've also noticed improvements with bladder and bowel function. 

What about its affect on the illness itself? No idea. I have been slowly deteriorating for quite a few years now, and this has continued whilst I've been taking Gilenya. That's not saying that the medication isn't helping to fight disease progression. I could be progressing quicker without it.

On the face of it, I think it comes down to the path that MS is on for each individual. Mine is very aggressive. That's why my diagnosis is 'Highly Active Relapsing Remitting MS'. I'm still waiting for these remissions though!

It's been the same on Rebif though. And Tysabri. On the latter, I also found symptom relief despite there being no obvious changes with the progressive nature of the illness. I had no symptom relief at all on Rebif. Everything worsened considerably. My God, that stuff was like poison to my body. 

I hope I'm not putting off anyone who might be contemplating switching to Gilenya from their current medication. I am just telling you how it is with me. No disease modifying therapy has had any real impact on the progression of the disease, and the symptom relief I get is on a par with Tysabri. The difference is that the Gilenya way is a pill, that's it. 

So is symptom relief enough for the NHS to continue paying out up to £1300 a month for?

I don't think so either. 

Have a good 'un,

Dan 

Week 51

I didn't so much as type the word Gilenya once in last week's blog. I feel like I've let you all down, but don't worry, I've got over it. I shall, however, endeavour to talk about it a bit in this one. But not just yet. 

I've been getting a bit of neuropathic pain recently. Only Intermittently though, not constant. Usually at night - Just as I want to sleep! A horrible stinging and burning sensation, It feels like my feet are on fire. It goes up to my knees and stops dead. It's my legs, it's ALWAYS my legs!

I've been 'lucky' when it comes to MS related pain. It's always been present, but it has been of a minimal significance. Recently it has struck with a vengeance on a couple of occasions. On one, it kept me awake almost all night. I was not happy. 

I currently take Amitriptyline for neuropathic pain. I was on 50mg daily. I should actually say nightly really, because those babies make you sleep like a, erm, a baby, but I cut down to 30mg as I was aware that they were having an imparing (is that such a word, or have I just invented a new verb?) effect on my cognition - you know, when your brain takes that extra second or two to acknowledge something has been said to you, or when you temporarily forget something unforgetful. That's an oxymoron, just for you MSers

I was initially reluctant to increase my neuropathic pain medication because of the potential weight gain as well as the cog-fog issues already mentioned. I did a bit of research on some other neuropathic pain drugs, - Pregabilin, Gabapentin and duloxitine in particular - then I spoke to my MS nurse about my options. 

She told me that all these drugs work in a similar way and the side effects are all pretty much the same. As my body tolerates Amitriptyline well, she's suggested that I stick with what my body knows and increase it as needed. 

Oh (*insert your choice of swear word here*)! I don't want to increase my medication, but I have a plan. Unless this pain becomes a regular occurrence, I think I'm going to stick to the dose that is good 99% of the time, and when the pain starts the other 1%, I'm going  to dose myself up with Tramadol. Obviously, it won't take the pain away, but it might make the pain not bother me and it might help me get off to sleep too. 

I've got a stash of 100 50mg tablets from a time I was given them, but I never used, for a reason that escapes my mind just now. See, the cog fog is bad enough, WHY would I want to increase my meds and make it worse?

I promise to talk about Gilenya next week. Have a good  one,

Dan

Week 50

It says 50 weeks at the top of the page. That's nearly a year - I state the obvious and everything in this blog. Such a 'must read', eh?

Before Gilenya, I was on nataluzimab (Tysabri), and when I had been on it for the same amount of time, I would be half way between my 12th and 13th infusion. That was 12 whole days spent travelling to London, having the hour long intravenous medication and then the second half of the hundred mile round trip back to Southend in Essex. It was pretty much an all day affair. 

The highlight of the day was the 'pit stop' at KFC on the way home. 2 piece variety meal with gravy by the way. Even though my Mum very kindly drove, I found the day exhausting usually and I always slept like a baby that night. 

Now I just take a tablet first thing in the morning. 

Before my stint on Tysabri, I was on Beta interferon (Rebif). As most of you will probably know, this medication is a three times a week injection beneath the surface of the skin. It is self medicated and the needle is less than an inch long, so injecting yourself really isn't a major issue. You do get given one of those awkward and fiddly auto inject gadgets, but to be honest, by the time you've set the thing up, you might as well do it yourself. 

In 50 weeks, I would've done this 150 times! That's a lot of itchy site reactions and a lot of 'flu-like' symptoms that night and the accompanying broken sleep that leaves you feeling like crap the next day. 

The 'experts' do warn you that you might endure this side effect the first few times you inject, maybe the first few weeks, even. What about the first few months, or the first few YEARS, eh, EH? Seriously, I was getting the same nasty side effects after two and a half years, as the ones I got after the very first injection. 

390 times I subcutaneously injected that stuff. Why did I stick with it for so long? Because I believed it was for the best in the long run. 

Now I just take a tablet first thing in the morning. 

Happy Friday,

Dan

Week 49

I moaned about my eyesight the other week as my vision was giving me a bit of jip (trouble). I didn't think it was optic neuritis and the Twitter community largely agreed with me. 

Anyway, my initial beliefs that it was what my MS nurse refers to as a heat related 'Pseudo relapse' seem to be the case. What's a pseudo relapse, you could well be asking? They call it that because this 'glorious' weather we have been 'enjoying' in the southern parts of the British Isles can cause some MSers to believe they are having a relapse because they are enduring a worsening of symptoms brought on by the humidity. 

Getting back on topic, my eyesight has got better since I last moaned about it as the humid and sticky weather has passed. Fortunately, summer doesn't last very long in this country. 

I didn't drive the car for over 2 weeks because I didn't consider myself safe, but I got behind the wheel yesterday. It felt great. I know that my eyes will eventually prevent me from driving, but not just yet. 

I have got an appointment to see an ophthalmologist (eye doctor) coming up. Although I don't believe I need it now, I'll still keep it. It doesn't do any harm to keep an eye on them (Ha! irony) as we all now know that Gilenya can cause a swelling of the macula (a spot in the middle of retina of the eye) leaving your vision in a similar condition of someone with optic neuritis. 

The weather hasn't had an effect on either my bladder or my bowels, so the Gilenya is doing its job with those two symptoms. And  my levels of fatigue are still pretty low *does smiley face* 

Well that's about me done for another week. Not much to say about Gilenya, I'm afraid, but it's continuing to what it has been doing, so I'll take that. 

Roll on Autumn. 

Dan

Week 48

Before I started taking Gilenya, I was on a drug called low dose naltrexone (LDN). It is a drug that isn't available on the NHS, so it has to be paid for by the patient with a private prescription. It isn't an expensive therapy. £20 odd per month, so I found it affordable. 

The reason the NHS didn't adopt LDN as a disease modifying therapy  is because the results from the clinical trials they did came back inconclusive. Some people swore by it, but many said it had no effect. Therefore, if you want to try LDN, you've got to fund it yourself. 

Naltrexone  is an opiate antagonist. That means the drug will stop any opioids in your system from working. It is used predominantly for treating heroin and morphine addicts, but it was tried in much smaller doses on people with MS with some success. 

During my time on LDN, I felt stable. I had no improvements or symptom relief, but I didn't progress in any way. 

Remember I told you about LDN being an opiate antagonist? Well, I'd been on LDN for around 6 months and I did one of my big stacks and broke my arm. It was a bad break and I would later go on to have surgery (1 plate and 7 pins). I was in a lot of pain, so the paramedics gave me some morphine nope, not a thing. They gave me some more. Nah, still in pain. They had to get another medic to give me a third lot as the other one had given me the most they were allowed to. "What do you mean you're still in pain? You should be as high as a kite!" The puzzled medic told me after my third dose of morphine 

I never gave it a thought at the time, but despite being in a small dose, the naltrexone was working against the pain relief. 

I carried on taking the morphine, despite it giving me no pain relief whatsoever for another few days. After a couple of days, the morphine did start to have a minimal effect, but my arm still bloody hurt. I was laying in bed one afternoon when it hit me. I remembered that I had Wifey bring my 'ever growing' medicine bag to the hospital for me, but the LDN has to be chilled, so it's kept separate from my other meds. I'd forgotten all about it. Hang on, that stuff is stopping the pain killers from working! I hadn't had any for nearly a week and the morphine was very slowly starting to have effect. 

I haven't had any since. As soon as I came out of hospital, I was told I would be having Gilenya in the near future, so I never bothered re-starting the LDN. 

I'm contemplating having another go on LDN. Shall I wait till they withdraw Gilenya or shall I get  back on it now? I don't know the answer to that just yet, but before you question why I've made you read all that, it's because I haven't got any updates on Gilenya, it's all ticking away quite nicely. 

Happy Friday,

Dan 

Week 47

Last week I spoke about a few issues I am having at present. I never gave it a thought, but they do have to test your eyesight when you've been on Gilenya for four months - I think it was four months. It was so long ago now, I can't remember? - Anyway, they did the tests and were happy with the results, so they discharged me. 

I doubted that the medication has anything to do with my current eye issues, but I didn't want to take a chance with my eyesight, so I rang up my MS specialised nurse and left a message with them to contact me.  After speaking with my consultant (via my nurse), I am expecting an appointment with an ophthalmologist who will examine my eyes. Lets see where that gets me.  They don't think it's optic neuritis either, so it's probably nothing. 

There has finally been the first case of progressive multifocal encephalopathy (PML) that has been attributed to Gilenya. I think 'finally' is the wrong choice of word, but what I mean is that it was always going to happen. Any treatment that stops the immune system from crossing the blood-brain barrier will have a PML risk. 

There are 71,000 MSers worldwide on Gilenya and to date there has been around...?...cases of PML  (At this point I was hoping to be able to give you a definite figure as I know there are examples of post Tysabri patients who've sinced moved onto Gilenya and subsequently been diagnosed with PML). These have all been attributed to previous disease modifying therapy - namely Tysabri - but the PML case that's hit the news over the last few days has no link to Tysabri whatsoever. It is the first and it certainly won't be the last. 

Tysabri, however, has had 350 odd cases as of April this year, and almost 1 in 4 have died. To be honest, I think they're the lucky ones. No seriously, if PML doesn't kill you, it leaves you heavily disabled. I do apologise if I've caused any offence with that statement, but if I had a choice between those two scenarios, I'd take the easy way out. 

Annnyway, so our chances of getting PML whilst on the oral therapy are greatly reduced. I don't know about you, but I have no intention of stopping this tablet a day therapy. If they take me off it, so be it, but until they do, I'll stick with it. 

Stay strong. 

Dan

Week 46

I feel like I have been banging on about a host of other stuff recently and not talking about Gilenya. Gilenya is stable, so I am afraid I won't be talking much about it, so please feel free to push that 'X' in the top right hand corner of your browser window, if you don't want to hear my inane ramblings about the next thing that enters my head. 

You still here? Well you have been warned!

I think I am starting to get optic neuritis. It is a common symptom of MS, and I suppose I am 'lucky' to have not had this problem previously in the seven years that I've officially had this bloody illness. 

I've noticed recently (7 days)  that when I focus on a certain point, it isn't instant and it feels like my eyeballs are rattling about inside my head until they get to where they're meant to be. This all happens in a split second and then they are fine again. I have been getting a fair bit of pain behind them too. No double vision yet. 

I don't know if this is the start of something or if it is down to this heat? Yeah, yeah 'I'm in denial' you're saying to your device right now. The thing is though, they are completely fine right now (21:45) and have been for hours - just like every day. When it's hot - forget it. When it's cooler, they are fine. It means I'm not driving at the moment and if it isn't a heat issue, then the car will be getting the Spanish archer (El Bow) Geddit? I'll hang onto the car until cooler weather and hopefully there'll be no further problems. I'll just have to wait and see. Only filled the tank up the other day. That was a waste of 80 quid! Still on a positive note, the fridge is rammed full of Stella. See my glass is half full! Hypothetically speaking, that is. In reality, mine is empty... 

*gets another beer from the fridge*

I looked into the drugs that are going to be used it that secondary progressive trial I spoke about last week and they're all tried and tested medicines. They're called ibudilast, riluzole and amiloride and are currently being used on ailments such as Amyotrophic lateral sclerosis (dunno either), hypertension, asthma, stroke and heart failure. 

I've probably bored you enough about non-Gilenya matters, so I'm off. 

Happy Friday,

Dan. 

Week 45

I mentioned the other week that they believe me to be entering the secondary progressive phase of the illness. I also said that I know that I have had secondary progressive MS (SPMS) for three years at least.

When I 'officially' get the word progressive attached to my diagnosis, they will withdraw my eligibility to have Gilenya. Sounds a bit harsh, right? Well, yeah, it is, I suppose. It's not the end of the world though. I know I am repeating what I have already said, but they have (only) just started looking into medicating people that are more progressed than the relapsing remitting stage of MS. Before a progressive diagnosis would mean you were given a wheelchair and sent on your way, but things are starting to change for (us?) more progressed MSers

This is where I get to my point. I have registered an interest with a drug trial for people with SPMS. It supposedly starts in the Autumn of this year. Now anybody that knows anything  about drug trials will tell you that that means it will more than likely start this time NEXT year. That should fit in nicely with my SPMS diagnosis. 

The trial itself is called MS-SMART  - who makes these bloody acronyms up? It is being funded by the Medical Research Council and the MS Society. It will use three different drugs. You will be given ibudilast, riluzole or amiloride. 

I've never heard of any of these drugs, but they have all shown promise when used on people with SPMS, so as soon as I've finished this blog, I'll be off to Wikipedia to do some research. I won't be reading about the side effects though!

I don't know what will happen with this blog when Gilenya has been withdrawn. I'll probably keep it going. I mean, Gilenya rarely gets a mention these days anyway. What it has helped with are stable, so no news really is good news. I'll just stop advertising it as a Gilenya diary, I suppose. 

Enjoy the sun, if you can. 

Dan