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. 

Dan

http://www.medicalnewstoday.com/articles/244466.php

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: 

http://multiple-sclerosis-research.blogspot.co.uk/2012/08/at-last-some-movement-upwards-on-rda-of.html?m=1

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. 

Dan

Week 42

Before I start, I feel like the need to apologise about last week's blog. Lets be honest, it was pretty crap - more so than usual, even. I was on holiday (kind of), it was pretty much chucked together at the last minute and I even forgot to talk about what had been in the news concerning MS that week. Not my fault, it's the MS, blah blah blah. 

Had I made more of an effort, I would've mentioned the exciting news to come from the  Northwestern University Feinberg School of Medicine, in Chicago where they have been working on a new treatment that targets only the proteins that come under attack when the immune system fails to recognize them as a normal part of the body. Researchers hope they will be able to cure the disease but leave the rest of the body's defences on guard.

Good old copy and paste, eh?

What they are basically saying is that current medications are immunosuppressive - they stop the entire immune system from working, whereas this new medication only targets the parts that come under attack, leaving the rest of the immune system to do its job and fight off infections and other foreign bodies. 

These results are taken from a small stage 1 trial, so it is still a long way off from being administered to the masses, but it is another step in the right direction, and Dan likes this*.

Obviously this news is over 2 weeks old, so it's 'old hat' now, and you're probably telling yourself that you've read about it via a million links that have already appeared on your Twitter timeline. Well, what can I say? I am a bit slow on the uptake, but that's not my fault, is it?

Before I go I want to tell you that I have restarted my exercises and I have got a bit of much needed strength back in my legs. I've lost count how many times I've fallen over in the last month, or so. The humid weather saps my energy, so much so, the mild exercising regime that I have got actually makes me worse. Anyway, the milder weather this week has got me back on track and I haven't falling over for over a week. 

*I am aware that referring to yourself as the third person is a sign of madness, but I firmly believe that a little bit of insanity gives you great armour in this battle with MS and your homework this weekend is to do something frivolous. 

Stay crazy, people. 

Dan

Week 41

I've spent the last week at my Dad's in Norfolk. It's been nice to run away from Essex and all the stresses that come with it. I don't know who bloody invited MS though, but it came with me *colon/hyphen/close bracket* At least I tried!! Wouldn't it be great if we could have a holiday from illnesses? I'm not greedy. The last week in July, and the first week in August please? Oh, and a couple of days over Christmas too, if possible. 

One of the listed side effects with Gilenya is diarrhoea ( thank you for that, auto spell). Despite all the spicy food I eat, I never get this bowel problem - yep, tempting fate again. It's true though. My bowels were regular before I got ill. Every day without fail, I'd empty them. MS though, has made them go from one extreme to another. I could go 7 to 10 days even, without going, and when they Finally did go, boy do they go! Enough of that. 

This has got me wondering: since I stated taking Gilenya, I now go regularly. I believe that what some people would say is a negative side effect affects me in a positive way possibly?

My fatigue has been rubbish  since I last wrote. Even in the country, the humidity has been quite intense and in turn , my legs are crap and my hands are so numb its like wearing boxing gloves. It makes mealtimes a challenge, I can tell you. Roll on Autumn...

Dan

Week 40

I have been on Gilenya for the same amount of time as a gestation period of a human baby. Where does the time go?

I went to see my Neuro last week for the usual six monthly check up. I've been given an extended disability status scale (EDSS) of 6.5. I don't know how the point five has come about. I thought it was a straightforward one to ten, but there you go. 

We also spoke about the fact that I am entering the secondary progressive stage of the illness. I've spoken about this before, so I won't bore you twice on the same subject. That would be really boring! The bottom line is they will more than likely stop treating me with Gilenya in a year's time. At least I've been given a year's notice. The only concern I have with this is the theory that once you've stopped taking an immunosuppressive drug like Gilenya, your immune system kicks back in again, only it's more aggressive. Fingers crossed, I won't have slipped any further down the EDSS scale and they can see that my stability IS cost effective, and they keep me on it. It's all about the money at the end of the day. 

She also wrote me out a script for a drug called tinizidine (trade name Zanaflex). This is an anti spasticity drug, like Baclofen. My legs have stiffened up a fair bit of late, and as I've already said about my reluctance to increase the Baclofen, it was agreed I should take something else. That's where the tinizidine comes into play. It can either be taken alongside Baclofen, or it can replace it altogether. My plan is to do the latter. You can't go in at the desired dose, but you have to titrate the drug slowly. I am up to three 2mg tablets per day. I think you can go up to 16mg per day. I know I can go a lot higher than what I'm on at present. The plan is to hit 12mg, then cut down on the Baclofen and see how it goes. 

So what next on the SPMS and treatment front?  Keep my ear to the ground and try to get my backside on a drug trial for people that are SPMS. That something that they're finally looking into. Up until recently, if the word 'progressive' was included within your diagnosis, you were put in the corner of a room to waste away, because it was universally believed that there is nothing they can do for you. 

They are recruiting for people with SPMS to go on a Tysabri trial that I know of. They're also recruiting primary progressive MSers for a drug called Ocrelizumab, so we've all got some hope, regardless of where we're at with this illness, so I'm not prepared to give up yet, and neither should you be. 

Speak soon,

Dan

Week 39

Well, guess who's having a right crap time at the moment? Yeah, your's truly. It's the weather. It has made a mess of of my legs and my hands are so numb, I can barely hold a knife and fork. My legs are rigid most of the day. I can only bend them at the knee using my arms. 

I tried to combat this by increasing   my anti spasticity drug Baclofen from 40 mg a day to 60. This has made no difference whatsoever. I'm reluctant to go any higher as the drug does have a bad press. You see, Baclofen relaxes ALL of the muscles in your body. It doesn't just target the area's that need it. Prolonged use can make your muscles weak, eventually causing muscle wastage. I want to hang on to what I've got for as long as possible. I even know of some people's claims that Baclofen has put them in a wheelchair! I don't know about that, but it is considered a very controversial drug to take in some circles. You're damned if you do, and you're damned if you don't. Anyway, I've gone back to my original dose of 40 mg of the Baclofen. There's no point taking the extra if it isn't helping me. 

So why the change? It happens every year. It's the weather. Although I am worse this year. It's not even particularly hot. It's just hitting 20 degrees, but it has literally changed overnight. We had snow at Easter on the Costa-del-Southend, and in some parts of the UK they had snow in May! It's the sudden change in the weather that's done me. That's my opinion anyway. 

Fortunately the Gilenya is still doing its bit. I had wondered if my body was starting to build up antibodies against it. Fatigue has made sporadic appearances, but it's still only minimal and I am keeping my eye on it. However, I am expecting to see more of it as the temperature rises. I haven't had to go to bed at any stage since I've been popping this daily pill, so when it does crop up, it is manageable. 

It's just a shame that this treatment never made an impact on my ability to walk, or even the spasticity. That's one symptom I could really do a bit of relief from at the moment. 

Dan

Week 38

I did something the other day that I haven't done for well over thirty years: I fell out of bed! Serious. It was time to get up anyway, so no big deal. I don't want to include it on my tally of falls in May, but I suppose hitting the deck is a fall, so I have to include it Hang on, no I don't. My blog, my rules (stop calling me a fascist!). I was asleep, it had nothing to do with MS and I didn't hurt myself. Therefore it's off the list! 

I did, however, manage to unintentionally go to ground on two occasions in May, neither of which were under the influence of alcohol, but that still ain't bad. They were at the beginning of the month too, so I'm doing okay despite this warm weather making my legs somehow manage to resemble jelly and lead at the same time. 

I am attempting to shit on fate once again because as I am writing this blog, it's still May. The date is  Tuesday 28th. It's half past three and I'm already drinking Vodka.

The Gilenya is a case of 'Same old, same old...' That's not a bad thing. It means I am stable(ish), and I'll take that for now. The 'ish' bit is included because my legs are rubbish at the moment and my extremities are numb. That is nothing to do with the meds, it is due to the glorious weather we're enjoying at the moment in the UK! Okay, we've had a couple of days in the late teens; I think the temperature even hit 20 degrees one day last weekend in sunny old 

Southend-on-Sea. 

I find myself getting more sensitive to the heat as each year passes which is a bummer.  I am presently house hunting in Finland. I wonder if the NHS deliver my tablets to Helsinki?

I could move to Scotland, it's always cold there. Well  if the weather forecast is anything to be believed. The only problem with Scotland is that they have the highest (or is it lowest?) ratio of people to MS in the world. It's about 1 case of MS per 400 people there, whereas on this side of Hadrian's wall, it's about 1 in 600 odd. That would be just my bloody luck to get it twice!

Guess who fell over yesterday (29th)? Yep me. 3 falls in May - provided I don't fall over tomorrow. 

Have a good weekend. 

Dan