Friday, 26 July 2013

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,


Friday, 19 July 2013

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. 


Friday, 12 July 2013

Week 44

I'm sure I mentioned to you recently that I started taking a new drug for spasticity. The plan was to replace the anti-spasticity drug Baclofen with a different anti-spasticity drug called tizanidine (Zanaflex). Well I got the latter up to the maximum dose, but I didn't notice any improvement. I did, however, find my legs weaker, so I immediately started cutting down on the Baclofen till I was right off it and taking only tizanidine. I'll get straight to the point - It doesn't work anyway near as good as Baclofen with me. 

There is an old metaphor: If it isn't broken, don't fix it. Well that's not quite the case, so I've invented a new one for you, ready? *drum roll*  'If it IS broken, but still works a little bit, don't try to fix it, as you'll make it worse!' I made that up all by myself. I am getting the copyright on it tomorrow, so plagiarise me and I'll sue! I won't really, I'll probably forget to. 

I've got a bit of a shitty story for you.  I had diarrhoea in the week. (Pun intended, by the way). Now you MUST be asking yourself why I am telling you this? I just wanted to make a note of it because it is a recognised side effect with Gilenya. I know it is nothing to do with Gilenya because I've been on the medication for almost a year, but I still thought it was worth the mention. 

I was reading an article  the other day about Gilenya and it said that it has been approved by the Food and Drug Administration  (FDA) for 3 years now. The original stage 3 trial started 4 years prior and as in a lot of cases, you are kept on the drug when the trial has ended, (I have a friend who has been on Tysabri for 11 years now!) means there are people that have been on this 'new' treatment for *gets calculator* - 7 years. I wouldn't mind speaking to some of these people to see how they feel their illness has progressed - if at all - in that time. A link to the article is at the bottom of the page. 

In the first 6 months taking Gilenya, I believe I had stabilised, but now that march towards progression is in motion again. 

I apologise about ending on a not so bright note, but I don't work for Novartis, so I'm not here to promote their product. I am just saying it as it is. 

Have a nice weekend, all. 


Friday, 5 July 2013

Week 43

I don't know about you, but where I am (the UK), I've been getting plenty of vitamin D. It's been hot. Too hot in fact. The weekend just gone has been a hot one. The actual heat, or the sunlight isn't the problem. In this country, you can't have heat without the dreaded humidity accompanying it. We are  all different. I know MSers that worship the sun. In fact, my old supervisor at work had MS too, and he actually moved to Australia  because the heat helped to minimise his symptoms. I have been told that the heat is different abroad. It's not so close as it is here, so it isn't humid like it is here in good old Blighty (England).

I haven't had the courage to try that theory out yet, but wifey and I have discussed the idea of going on a cruise on the Mediterranean maybe, catch a bit of sun AND sea air.  Call me a coward all you like, but the thought of spending all that money just to more than likely make myself feel more ill than I usually do seems futile. Anyway I take 5000 international units  (iu) of vitamin D3 every day. That comes in at  1250% recommend daily amount (RDA).

There are firm beliefs that a lack of vitamin D could be just one of many factors that could possibly contribute to you being at risk of having MS. There's a lot of ifs, buts and maybes in that statement and somebody of a more cynical disposition might say that they're saying it like that, because they simply don't know. They could also question the point in recommending you take high dose D3 supplements even though your MS has already been recognised (diagnosed), as it seems to be nothing more than a case of 'Locking the stable door after the horse has bolted'. I don't know, but for what they cost - peanuts - ill take them anyway. 

I do give vitamin D3 supplements to my children too. They are 10 and 6 years old and they both have 2000iu each day. They come in the form of a strawberry chew, so there's no difficulty in getting them to take them after they've had breakfast. Who knows if it will help, but it can't do any harm. If you have MS and kids, I would advise you to speak to your consultant about what dose they think you should give them. Here is what mine recommends:

If I knew the answer to that lot I would be a very rich man. Alas, a very rich man who still has MS and an expanded disability status scale (EDSS) score of 6.5. All of a sudden money seems pointless to me. Every penny in the world couldn't buy my health. 

Anyway, it could be worse. Some of my symptoms may be exacerbated due to the weather, but there is none of the worsening of fatigue, bladder and bowel (kiss my arse, fate) issues that I was expecting to appear with the warmer weather. Thank you, Gilenya. 

Don't forget the factor 50 suntan cream, people.