Week 90

I said a while back that I would no longer publish a weekly blog for the sake of it, or because it's a Friday, or whatever other reason. I haven't written recently because of just that. 

When I first started taking Gilenya - nearly two years ago - it had only just had its licence renewed after it had been withdrawn because a patient died after taking a single dose. 

My consultant told me I would be one of the first people to be given the treatment since its re-issue. I knew that there were people out there that were curious about Gilenya, so I decided to record any improvements or side effects I got whilst on the medication. 

At first, I had so much to talk about, so writing a weekly blog was not a problem. However, now we are at the...er...now. There hasn't been any real noticeable changes for a long time, thus leaving me with nothing to report - not even in the month since I last wrote. 

That means I'm closing this blog down. Its usefulness has run its path and it is time to call it a day.  I have enjoyed the 'ride' and I hope it has given you an insight into what it is like to be on the medication.  Maybe it's helped you make a decision on whether to go on it, or not. For me, it's a no brainer. I take 16 tablets and vitamins per day. 17 now, including Gilenya. I haven't had a relapse in the 20 months I've been on it and I haven't endured a single side effect in that time either. Not bad, eh?

Should anything worth writing about occur, I'll be in touch. 

Enjoy your fingolimod,

Dan

Week 83

I had to get up at half past five the other morning. I can't remember the last time I got up that early. I think it was when I worked in London. I used to start at 7 o'clock  and the hour journey meant that my alarm would start going off just before five. I always needed to hit the snooze button for half an hour before I could drag myself out from my slumber. 

As this was going to be a very long day, starting with a two to three hour car journey through the London rush hour traffic - as a passenger, I have stopped driving now - I knew this would be a big test on my fatigue. 

Well it all went quite well (understatement). I got up with absolute ease. Just a couple of snooze button pressing - I know that sentence is grammatically incorrect, but I don't know how to make it right, so it's staying as it is, I'm afraid. Ha! I should've said 'presses', not 'pressing'! I'm not going to correct it though. With this blog, you get my tedious thought processes along the way. 

Anyway, after I sprung out of bed, I got through the tedious car journey and spent a tedious morning watching the tedious football team I support undertake a tedious 'open' training session, where the supporters can watch said tedious training session. It's at this point, I need to point out to any reader who must be completely mad to still be reading this drivel, that there is absolutely no way that this tedious morning's 'entertainment' was in any way my idea. Thanks, son. 

All in all the fatigue monster kept itself at bay all day, despite many opportunities to show itself. So much so, in fact, I was still wide awake when I took myself to bed at gone one in the morning. That's something like 20 hours! My fatigue is now back to its pre Christmas levels where I was able to do things like get out of bed before lunchtime without feeling like a zombie all day. 

I still get tired easily, but I'm not getting so much of the physical effects that fatigue does to my body. 

Happy Friday,

Dan

Week 82

My vitamin B capsules turned up the other day - my God they smell awful - and I'm taking 2 a day. 

I don't expect to see any improvements taking vitamin B. I'm doing it to keep my B vitamin levels as high as I can. They are also a source of folic acid, and for whatever reason, those levels dropped very low recently. 

I've been taking folic acid for nearly a month now and I don't feel dizzy  or light headed any more. I assume my anaemic symptoms have 'left the building' because I'm no longer deficient in folic acid. I've still got another 2 months worth of folic acid to take, and I'll continue to take them until they're all gone.

So what happens next? That's where the vitamin B supplements get involved. As well as the promised vitamins, they also contain folic acid. 200% recommend daily allowance (RDA) in fact, so this means I can now stop smoking asparagus and stop injecting grapefruit juice!!

So how does Gilenya fit in with all this? It doesn't. I've rummaged around the web and I didn't find any incidence where a link between a folic acid deficiency and Gilenya (or any another MS treatment) has been mentioned. We need to remember that not all of our health issues are because of this illness. I need to try and 'practice what I preach' because I blame everything wrong with me on MS. 

So how comes I became deficient in folic acid in the first place then? It's quite possibly diet related, but it's more than likely because I've got MS. Oh...?

Enjoy the natural vitamin D, all. 

Dan

Week 80

The folic acid tablets are going well. I did a 12 mile run the other day and I didn't fall over asleep once. 

Okay, some (all) of that isn't completely true, but my fatigue ain't too bad at present. That could be the drugs, it could be that the invisible monster is on the decline anyway, or it could be a combination of both? Does it really matter? Who cares? Not me. 

One thing that has improved over the last few weeks is my balance. I haven't had a single fall in that time because of lack of it - I won't be publishing this blog until tomorrow, let's hope I don't have to delete this paragraph between now and then. That surely is the increased levels of folic acid in my system preventing the dizziness, that caused the head spins and potential falls when I stood up, or even when I changed direction when walking. 

I have met a lot of people with MS over the years and I consider most of them as friends, so I do get to chat to MSers about this wonderful illness that we share. They're the best people to talk to about it; forget you're Consultants, your Doctors, even your MS nurses, your fellow MSers really do understand you. 

I was speaking to someone about it recently. I was moaning about my fatigue issues and she suggested I start taking 'B' vitamins. I had already tried taking vitamin B12 in tablet form, all to no avail, so I stated my reluctance to try them as if you start going down the supplement trail, when do you stop? You'll rattle every time you move and it'll cost a fortune. However, they contain so much potential benefits, I've decided to give them a bash. I mean, what harm can keeping your B1,2,3,6 and 12 levels topped up do? They're not expensive either. It's just two more pills added to the ever increasing list of tablets I take each day. If you're interested in trying them, here's a link to the ones I've just ordered. Cheap as chips:

http://m.hollandandbarrett.com/pages/product_detail.asp?pid=60&prodid=607&cid=67

Once again, I have managed to get through a Gilenya diary entry without actually mentioning the drug. Why do you read this drivel?

Happy Friday, folks. 

Dan

Week 79

As expected, I got a phone call from my Doctor's surgery last week, telling me that my vitamin B12 levels are normal, but - wait for the but - but, they told me my folic acid levels were low. So low, in fact, my GP had written me out a 3 month prescription for folic acid supplements. I asked the receptionist what the symptoms of a folic acid deficiency were, and she informed me that common symptoms are tiredness, having little energy (lethargy), feeling faint, or dizzy and becoming easily breathless. Well that explains a lot!

A bit of research with my mate Google, and I also discovered that not so common symptoms include headaches, heartbeats suddenly becoming noticeable (palpitations), altered taste and ringing in the ears (tinnitus). You may look pale.

Other symptoms may include numbness is your hands and feet. Some people may also have depression. Numbness in hands and feet, you say? Ha! I'm not a Doctor, but I can tell you that my numb hands and feet are nothing to do with me not eating enough broccoli, brussels, or any other vegetables high in folic acid!

Does this mean I'm anaemic then? The Pharmacist told me not necessarily, but I could've ended up that way had my blood not been checked. Yay. Go me! Going to see my Doctor wasn't 'an exercise in futility' (Pulp Fiction) after all. 

I've been taking 5mg of folic acid daily since Monday and so far there hasn't been any noticeable changes, but it's probably too early. As well as the fatigue, I'm hoping my dizziness will subside too. I've had a few falls this week. Three already in March to be precise, and a fair few of my recent 'carpet dives'of late have been due to a loss of balance, rather than a slump to the ground because of a weakness in the legs. 

Here's hoping the 'proper' falls start to stop (???) soon. 

Happy Friday ,

Dan

Week 78

Did you have any pancakes on Tuesday? I did. I had five. Lemon and sugar. No messing around. I love Pancake(s) Day!

In other news, I FINALLY got to see my Doctor this week and I was told that I need to have a blood test to see if I am deficient in vitamin B12. I already knew that. It feels like the whole world has told me that recently. All seven billion of you!

I had my blood test today and expect to hear the results confirming my B12 levels are completely normal in a week or so. 

Where does that leave me? Well, to be honest with you, I probably won't approach my Consultant and ask for more drugs. My fatigue definitely feels like it is on the wane. I said a little while ago that it's either improved, or I've just got used to it? Can you get used to living with fatigue? Probably not. So assuming my B12 levels are normal, I'm not going to ask for medication either. So it's all been a waste of everyone's time? Well, yeah, but, no, but...

Whilst I was there, I asked to swop the  Anticholinergic

medication I was taking (Oxybutynin) for one of the newer ones that don't have an impact on the cognitive issues that are associated with the older ones as suggested by my Consultant. 

Anticholinergic medication is used to  stop the spasms and calm down the muscles in an over active bladder. In other words, you don't have that massive urgent urge to run (ha!!) to the toilet every 20 minutes. You can take my word as an expert on this subject, when I say bladder incontinence most certainly is NOT an invisible symptom!!

Doctor 'Doolittle' (No he doesn't talk to animals, he doesn't do much for his patients) told me that he hasn't ever heard of what I told him and that oxybutynin is his antichloergenic of choice. I repeated my neuro's advice - a Professor of Neurology, no less - and he reaffirmed his view and said that if I could get my Neurologist to put this in a letter, he would then (reluctantly) swop my oxybutynin for a newer antichloergenic. 

He did, however, write me out a prescription for a drug called Loperamide. This is just like Imodium. It hardens the stools, so it gives more feeling when your bowels need emptying. With that you would expect more warning too. Let's hope so, eh? So my visit to my GP wasn't a waste of time then. 

Do something frivolous this weekend. That's an order. 

Dan

Week 77

I haven't updated this blog for a few weeks now   So what has been going on in 'Dan's world' in those last 14 days, you're probably not thinking. 

I have been talking about the fatigue issues I was  having. 'Was!' he spoke of it in the past tense. Hurrah! At this point, I feel that I should apologise for my bad grammar, because 'was' should've said 'am'. Why did i just write all that nonsense? I genuinely have no idea. So why haven't I done anything about it? Well, I have. When I spoke to my MS Specialist nurse recently, she told me that she couldn't request my Doctor prescribe me vitamin B12 injections unless I was actually deficient in iB12.  She also said I would need to come in and see them if I was after medication for fatigue. My endeavours had basically drew a blank then. 

More drugs are a last resort for me, so I booked an appointment to see my GP last week. The earliest I can get in as a 'non emergency' appointment is in TWO weeks time (it's in five days if you're reading this on Friday). I'll be attending with  all of my extremities crossed as an aid to the hope that I am lacking in vitamin B12. 

By the time I write next week, I should have some answers for

you which (unlike this blog) means I should actually have something worth talking about to say. 

I have had some toilet issues recently. On two occasions this year, I have been in a situation where I didn't have the necessary control of my bowels. In layman's terms - I shit myself! What a horrendous experience that was. The first time, I was at home, but the last one was in public. Fortunately, I was in an MS therapy centre where I attend on a Friday. So although I was 'out', it wasn't 'out-out', if you know what I mean. 

If it happens once, you can put it down to food poisoning, or a virus, or that dodgy kebab you had at the end of a drunken night out. But twice? The alarm bells are ringing here and I know I have to do something about it. I could change my diet. It contains a lot of fruit and a lot of dairy products, neither of which I really want to cut down on, let alone stop. More drugs then?

Diarrhoea (thank you, autocorrect) is a side effect people can get from taking Gilenya. There is no way I am thinking along these lines though, because I've been taking the drug for nearly 18 months now, so it would've reared its ugly head a long time ago if that were the case. I'm going to ask my Doctor for some Loperamide. It hardens stools and I know a couple of MSers with bowel problems that take it and highly recommend it. 

I've got a list of requests as long as your arm for the Doctor when I finally get to see them. 

Have fun this weekend. 

Dan

Week 74

Fatigue has been back in my life recently for the first time in about 12 months. I'm quite content that its reoccurrence is in no way related to Gilenya. I don't know whether it has receded, or if I've just got used to it. It is quarter past nine in the evening and I'm wide awake. I'm probably not helping the situation much because as well as stimulating my tiny mind by doing this diary entry, I have got the darts on telly and nearly all the lights on in the flat. Phil Taylor has just got spanked 7-0, if you're interested 

I did tell myself that I wouldn't leave these blogs until the last minute, but just like most weeks, I have done exactly that. It is Thursday evening. I like to publish it on Friday mornings, that way I know where I am with regards to the current week I am in. 

I did seriously consider not doing a blog this week because there isn't much going on with me other than the fatigue. 

I did leave a message with my MS nurse a week ago, but I never heard back. They are very busy and nearly always return your call the next day, two at the absolute most. It's never taken this long for them to get in touch, so I can only assume my answerphone message has got lost in their voicemail system somewhere   I did leave them another message to call me. Hopefully they'll contact me before I post this blog tomorrow morning. If they do this blog will be even longer and more boring. Sorry. 

I looked into medication for fatigue. I'm going to see if they can write a letter to my GP asking them to give me some vitamin B12 injections. I know a few MSers who regularly have these jabs. Is it 3 monthly? I'm not an expert at all on this, but people that are anaemic tend to have them with that regularity. 

There is a drug that has been suggested that's called Seledigine. I think it's spelt like that. There are other treatments called Modafinil and Amantadine. I'll be honest here, I'm not keen on the drug route. I pollute my body with many toxins as it is. Think I'll go for B12 if allowed   

Do something silly this weekend. 

Dan

Week 73

Last week I moaned a bit about the return of the invisible monster that is fatigue. I ended the blog with questions about why it is back. 

I've had a couple of good days and a couple of bad days since I last wrote. The bad days culminated in falls. That's 6 now in January, one every five days on average.  Not great, a bit more than the previous few months, but my falls have been more frequent in the past, so I'm not complaining. Okay I am, but I'm not, if you get me. It does seem like the falls are more common of late though. 

It could be fatigue that is related to the falls. That would make sense, I suppose. Fatigue in MS is physical as well as mental. My muscles are weaker when I'm fatigued. The falls aren't balance related. It's a case of me not having the strength in my legs to keep me standing. I don't fall when walking (well, sometimes I do), my problem at the moment is transferring. I seem to struggle a bit getting out of my mobility scooter and getting onto the bed/chair/toilet, or getting back on my scooter from one of the above. 

I've even questioned the Gilenya and wondered whether it wasn't working anymore, or if my body had built up immunity to it. Hang on, isn't that the same thing? Anyway, this is a tricky one to answer, but I'm going to give it a go: My body has been in decline for a few years now. All the different medications I've tried haven't stopped progression. Some ofdrugs have given me symptom relief, but it hasn't done much for the actual illness. Maybe they have and I would be so much worse if I hadn't taken the disease modifying drug route. There's one way to find that one out, but no, I'm not going to stop it. 

If my fatigue is a sign of Gilenya losing its effect, you would assume that the other improvements I've noticed would also be on the wane. Well, there's a good bit of news. I still have the best control of my bladder and bowels that I've had since diagnosis. 

This is the reason why I am not entertaining the idea that the Gilenya has stopped working. I've left a message with my MS nurse to see if there's any advice she can offer me any advice on my new companion fatigue. Vitamin B12 maybe?

Have a good weekend,

Dan

Week 72

I didn't do a blog last week because I didn't feel like I had anything new to say about Gilenya and as my blogs of late seem to me to be getting pretty repetitive anyway, I decided not to put you through the misery of reading the same recycled rubbish again. 

Over this last week though, hindsight smacked me right between the eyes as it struck me (pun intended) that there is something I should have been sharing. 

One of the improvements I observed after starting Gilenya was a massive improvement in my fatigue. It was after 3-4 months on the treatment that it happened. It's stayed this way too - with the odd fatigued day or two, here and there. If I had a busy day (by my standards), I would get the fatigue of old, but a lay down on the bed for half an hour or so was often all it took for the 'head mist" and muscle tiredness to subside. 

I have already mentioned that fatigue seems to be creeping back on slightly more and more frequent occasions. Well, I feel like I've had it practically every day for the last two weeks. Not the best start to the new year, eh? I fall asleep after lunch practically every day. Before Gilenya, I used to go and sleep on the bed for a couple of hours after lunch every day and even then I'd still feel pretty crap the rest of the afternoon, until finally coming round in the evening. It would often feel like I've wasted the day. 

Getting out of bed in the morning is becoming increasingly difficult. I have to set my alarm for nine o'clock and I'm hitting snooze for an hour. Today (Wednesday), I didn't get out of bed till midday!

When I look back, I could say it's been on the up since Christmas. Christmas is traditionally a busy time of year, as any parent to two young children will agree. Christmas is the time of year were we all eat too much and drink too much too. Come on, admit it, you're nodding in agreement, aren't you. Obviously I've got no right to categorise everybody this way by saying 'we all'  but I bet there's quite a few nodders out there. 

So this blog finishes with questions, not answers, I'm afraid. Is my fatigue on its way back? Does this mean the Gilenya is losing its effectiveness? Has my body built up neutralising antibodies towards Gilenya? Or is it some kind of MS 'hangover' from the  food and alcohol indulgences over the Christmas period? Who knows? 

My life is a bit stressful at present, and I know that isn't helping. 

I apologise about such a melancholic diary entry, but this blog isn't just about the good things about Gilenya. It is about a bloke who takes the drug and how he feels, good and bad. 

Have fun this weekend,

Dan 

Week 70

I took over the Shift MS Twitter account last weekend. It was a very enjoyable experience; it was good fun and I met some MSers that I can have a laugh with. When I say 'met', you know what I mean. I have been asked if I would like to do it again in a few months. Of course I said yes. 

The Gilenya is ticking over okay. There really isn't any change from last week, so this blog is going to be a lot shorter than it usually is. I like to keep them short and sweet because, firstly, there isn't much change in what the benefits or problems (none) I get from the treatment on a week by week basis; I feel like they are pretty repetitive as it is - read one of my blogs and you've read them all! Secondly, I believe that if a blog goes on too much, the reader will lose interest. Let's be honest here, I doubt anyone is still reading this by this point. If I was reading this, I'm quite sure I would've given it the sack by now. 

I do read quite a few other blogs. Mainly ones by people with MS. I find it interesting what other people say and think, but I do have a low concentration span, so I've a habit of skimming through them after the first couple of pages. It's not my fault, I've got MS!

All jokes aside, I never had this problem before I had this illness. I used to work in London, and it's an hour's train ride away from the Costa del Southend, so when I wasn't sleeping, I was reading. I'd get through a book in a week, if not more if I had one I couldn't put down. 

The book I'm reading at the moment, I've been reading for 3 or 4 months now. Seriously. I just cannot pick it up. It would be a really good book too. It isn't anything to do with the author, or the story either. It was the same with the last 2 books I read too. It must be a year since I read an entire book. Ha, listen to me, I make it sound like I'm trying to move mountains, or something. 

I resolved to stop falling over and to stop swearing on New Year's Eve. I've done both twice in the  9 days since I declared my abstinence. I'm relatively content with these stats. I've got an excuse for the profanities. Actually I haven't, I've got a reason though. My football team has conceded 11 goals in a two game period that has seen us knocked out of two cup competitions. Bollocks! That doesn't count because I didn't say it out loud. 

The falls can't be helped, but I can make sure to listen to my body more. Both falls could've been avoided in all honesty. I feel my legs weak, I'm low on energy, so I tell myself 'I'll just finish doing (insert the chore of your choice here) and I'll sit down'. This is when I just slump to the floor and that's when the aggravation starts. Now I've stopped that and when my legs tell me to stop, I don't tell them "In a minute", I stop. 

Happy Friday, people. 

Dan

Week 69

Happy new year to one and all. I hope you saw in the dawn of the year in in the way that you wanted. 

I did, I spent the evening with wifey, the children and a large bottle of Vodka. Yes, I did drink far too much. No I didn't fall over. Not once. That itself is a good start to 2014, let's see how long I can keep it up. To be honest, I'll have probably fallen over by the time I publish this on Friday. I've got a whole 2 days to swerve the carpet till then. 

After my diary last week, I had a few tweets asking me about why a diagnosis of secondary progressive MS (SPMS) can affect an MSers eligibility for Gilenya? I probably didn't explain it properly, but in the UK, Gilenya is used as a second line treatment for people with relapsing remitting MS (RRMS). 

Gilenya's primary function is to reduce the amount and severity of relapses. In doing this, it is hoped that this will delay the transition to SPMS. When you officially get diagnosed with SPMS it is because you have stopped relapsing and your body is in decline. Your disability is slowly progressing. 

The scientists are pretty much in agreement that Gilenya doesn't help with the actual progression itself. Therefore it is pointless giving a treatment that at £41 per tablet, and approximately £15,000 per year to somebody who has stopped having relapses. It sounds harsh, but I can understand the decision. 

I have been given the Shift MS Twitter account to use and abuse for the weekend. Think I'll use it to 'shamelessly' advertise my blog...

NO FALLS!

Have a good one,

Dan