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