Saturday, 29 September 2012

Day 25. All quiet - 29.9.12

Dear anyone,

I haven't written for a couple of days because I haven't had anything to say.

My cold has gone, but that is the only thing that has changed over the last 48 hours. I did wonder if these ailments I've been getting could in anyway be down to the Gilenya, but it is probably more to do with the fact it is nearly October and I am still sitting around in shorts and a T-shirt. Well I was, but I'm not now.

I noticed that I referred to the drug as Gilenya. That's a first. I've been following Fingolimod for a good few years - since it was at the stage 2 trial stage. It has been Fingolimod for 5 or 6 years, so I'll forget about the brand name.

I was chatting to a friend at the pub last night. She has MS too and she calls it Gilenya, so that's probably why it's in my head.

Apologies for the waffle, but I felt the need to write something, anything...

Best Regards,


Thursday, 27 September 2012

Day 23. Coughs and Sneezes - 27.9.12

Dear anyone,

Something has just occurred to me, and that is I've got a rotten cold. So what, you're thinking? I make you right, but I thought I would mention it because I also had a sore throat the other week that lingered on for over a week. Basically I've pretty much had an ailment of some sort since I started taking Fingolimod.

I never get colds. Ever. I've always attributed this to my highly overactive immune system. But has this changed? Is it the Fingolimod? I can't answer that just yet. Watch this space.

I may well have found myself a Bona Fida side effect - I hope not.


Monday, 24 September 2012

Day 21. 3 weeks - 25.9.12

Dear someone,

I am starting to struggle to find things to say in this blog. I've been on Fingolimod for nearly three weeks now and I haven't really noticed any real changes. This is good news from the lack of side effects point of view, but it don't half make boring reading!

I do still get times at night where my hands are free of numbness and pins & needles, which is great. Fingolimod probably isn't the reason, but who knows?

I have to go and have a blood test once I have been on the drug for a month. I don't know why, but then I did want to start taking the drug ignorant to everything about it. I also have to give a liver function test too.

I'll let you know all the ins and outs of it all when I've had the tests. Until then, I'm sticking to the blissful ignorance view.



Friday, 21 September 2012

Day 17. Feeling fingers - 21.9.12

Dear anybody,

I haven't blogged for a few days because I haven't had much to tell you. In fact, as far as Fingolimod is concerned, there has been absolutely nothing to report.

Actually that's not true. I mentioned the other day that I got brief moments at night, my hands feel free of numbness and pins & needles. This has continued, so much so, I even got out of bed last night, got a pen and an old envelope and wrote on it. I have barely been able to hold a pen of late - let alone actually write! Anyway, my handwriting was barely legible before I got MS, so this effort is definitely considered a success in my eyes.

Even right now as I type, my hands feel a lot less numb. My fingers work normally, well that's assuming I can remember what 'normal' is.

Please, God, let this be Fingolimod starting to make a difference?

Kind regards,


Tuesday, 18 September 2012

Day 14. 2 weeks - 18.9.12

Hello somebody,

Today is the day I have officially hit the two week mark on Fingolimod. 14 tablets, I've taken as of today.

I haven't experienced any side effects, and putting a positive spin on it, I don't expect too either.

As previously mentioned, I did notice a need to use to toilet at night, but I can report that I have been fine for the last few nights, confirming my belief that it was the Magnesium Citrate making me wee and not the Fingolimod.

I have also observed the pins and needles in my hands has lessend, as has the numbness over the last few days. At one point on Sunday night, my hands felt completely normal. It felt amazing. They stayed like it for over an hour too.

Now you are probably thinking what I first thought - steroids? But over the 7 years since my diagnosis, I have had steroids on 7 or 8 occasions and they have never done that to me before. Maybe it is the 'placebo effect'? Maybe it is because 2 weeks must be too soon for the drug to be working its magic already. And lets not forget that these disease modifying drugs are not designed to make you better, they are designed to slow down the rate you get worse. Having said that, when I started taking interferons, they sped us my disease progression and when I switched to Tysabri, I improved quite dramatically, so I can be positive about hoping Fingolimod will actually improve things.

I am living proof that MS drugs don't do just 'what is says on the tin'

Take good care,


Sunday, 16 September 2012

Day 12. Nearly 2 weeks in - 16.9.2

Dear all,

I have been taking Fingolimod for nearly 2 weeks now and apart from my nightly bladder emptying sessions, I have nothing else to report in the way of noticeable changes since I started taking the medication.

I did still need to get up and use the toilet last night, but it was only once, it was becoming more frequent than that - 3 times on Friday night! Still as the Magnesium leaves my system, I believe my bladder is returning to normal. The time is 10:15 am and I haven't had my recent mad dash to the toilet as soon as I have opened my eyes this morning.

Yes that's right, I am still in bed. As soon as I finished taking the steroids last Tuesday, I was up and about and I think (know) I did too much and I am back at square one! I am really not happy about this, so my plan is not to get out of bed for a few days in the hope that I can get some benefit from the drugs before they wear off.

Speaking of drugs, the other day the FDA approved the licence for a new disease modifying drug. Teriflunomide taken orally and can be used around the same stage as the illness as the interferons. This could potentially be the first nail in the coffin of injectable medication for early relapsing remitting MSers.

I have got to go now as I need to use the toilet. Ironic , or what?

Kind regards,


Friday, 14 September 2012

Day 10. Double figures - 14.9.12

Hi nobody,

I've lost count how many days I've been taking Fingolimod. [Hang on a second] 10 days!

I've been taking Fingolimod for 10 days now. I take most of my meds first thing in the morning. I still have no news to report in the way of side effects, but I feel there are one or two things that I should make a note of.

I seem to be getting up every night to use the toilet - twice last night. Certainly not an issue of any importance, but worth a mention as I had been lucky enough to sleep through the night without the need to wee.

There is one issue I have though. As well as starting the new drug, I recently started taking magnesium citrate, so I have absolutely no idea if it is Fingolimod or the magnesium that is causing my night time 'pit stops'. Or if it is even a coincidence. This means I am going to lay off the magnesium for a month so I can assess any changes I notice on Fingolimod.

With hindsight it was a stupid idea to try something else when I had just started a new drug, but that's me, I'm afraid.

One change I noticed when on the magnesium though, is my bowels are a lot more regular - every day. I know this IS the magnesium, as I've heard plenty of MSers say this in the past.

Lets see how we get on now.



Wednesday, 12 September 2012

Day 8. One week on - 12.9.12

Dear reader?

I think I should explain the name of this blog to you. In the late 80s when I was just starting my young and disillusioned teenage years, I was a fan of an Indie band from Manchester called the Happy Mondays. If you hear it now, most would think them terrible, but they were great back in the day. Anyway, they did an album called 'Pills, Thrills and Bellyaches', and I've nicked the name. So that's it, boring, but now you know.

All's quiet on the Fingolimod front. I've been taking the drug for a week now. There is something I am going to mention. I know it sounds, almost pedantic, but this blog is all about any noticeable changes, so are you ready for it? Here it comes... I had to get up in the middle of the night to go to the toilet! Two days running! I know, hold the front page!

It may sound silly, but since I started self-catheterising before I go to bed, I never wake up in the night with a mad dash to the loo. That's it though.

I feel much better now I have finished the steroids. I'm back on my feet again and getting on with an exercise regime to keep me on them.

I've got my hands on some Magnesium Citrate. Magnesium is a very diverse vitamin. It has many properties, and one of them is that it helps with spasticity - stiffness. You have to get the right type and the dose that works best for you, so it is a bit of trial and error. I tried it for my overactive bladder earlier on in the year, but it wasn't as good as the Oxybutynin that I was taking, so I stopped. Hopefully I will be able to get off Baclofen if it helps my stiff legs. I have heard some real horror stories about Baclofen.

Yes I know, research can be bad for your health!

Kind regards,


Monday, 10 September 2012

Day 5. No news is good news - 10.9.12

Dear somebody,

Well this blog could be on the verge of becoming a damp squib.I've been on Fingolimod for 5 days and the plan was to catalogue any noticeable changes. I doubt I will feel any positive effects - I can sit back content that my white blood cells are being kept away from my nervous system, but that's about it.

On the side effects front, there are none - which is good, right? It's still early days, I know, but so far it's all good good.

When I was at the hospital for my first dose of Fingolimod, it came in a box with the price of £40.95 on it for the tablet. Now over 365 days, it comes in at a total of a few quid short of 15 grand a year! This is very similar to Tysabri, but all this is, is a tablet! I think Novartis are maximising the ability to re-coop their research costs. Fair enough, though.

Hopefully the next time I write, I'll have something worthwhile to say. No, hang on, no news is good news.



Saturday, 8 September 2012

Day 4. Bye bye relapse - 8.9.12

Dear Anybody,

The Fingolimod is passing by smoothly. Obviously I am two days into a course of oral steroids, so I am feeling pretty good. I don't think for one minute the Fingolimod is adding to the mild euphoria I am experiencing. But let's not forget that it is playing a small part in my recovery by stopping my immune system crossing the blood/brain barrier and gaining access to my nervous system.

I have bought some Magnesium Citrate with a view to coming off the Baclofen as it is supposed to help ease spasticity. I'll keep you informed.



Friday, 7 September 2012

Day 3. Same old, same old... - 7.9.12

Dear nobody,

It's day 3 on Fingolimod and I have nothing to report. No news is good news, right? Unless you're a journalist and good news is no news and bad news is good news.

I started my course of steroids today. Ready - methylprednisolone. Twenty five 500mcg tablets to be taken over 5 days. I don't feel any improvements after the first day with oral steroids. Here's to tomorrow evening then...


DEMYELINATING (But not for much longer) DAN

Thursday, 6 September 2012

Day 2. The morning after - 6.9.12

Hi all,

I forgot to say yesterday that whilst I was at the hospital, it got confirmed that I am currently in a relapse. My recent MRI scan shows active lesions on my immune system. Positives to be taken from this: I am still classed as relapsing remitting MS - I have believed I had turned secondary progressive; I have been offered steroids to help speed up the recovery; and this shit I've been feeling is not what I had feared I had progressed to.

Enough of that, since my first dose of Fingolimod, I haven't experienced any side effects whatsoever - yeah, yeah, he's only been on it for a day, you're thinking, but I am trying to be positive here. I took my second dose this morning, and again, no side effects yet.

I don't know what to expect in way of side effects as I'm taking this drug 'blinded'. I have deliberately avoided researching it or reading other users blogs. When I first got diagnosed with MS I nearly overdosed on all the information about it on the web. The same with Rebif, and more recently Tysabri. I know how it works and what it does, but other than that? Nothing, what will be, will be.

Kind regards'


I can't believe what a mong I looked in that photo I took of myself in hospital yesterday!

Wednesday, 5 September 2012

Day 1. - 5.9.12

Dear all (nobody),

Today is the day I start taking my new medication. In fact, I just took it. I am now officially on Fingolimod or Gilenya as it's now known.

I have got to stay in hospital for 6 hours after my fist dose - that's 5 o'clock tonight. It's a precautionary measure, they need to do an ECG before I go.

I suppose I had better introduce myself on the off chance anyone is interested in what this drug does to you.

My name is Dan Cooper. I am a 38 year old man who was diagnosed with multiple sclerosis in December 2005. At first this wretched illness that us MSers have to live with was invisible to others, but over the years my illness has progressed. I have lost the ability to work full time; I cannot walk unaided - I use crutches or a mobility scooter for longer journeys and I now empty my bladder by way of intermittent self-catheterisation. I also have (what is seemingly compulsory) pins and needles in various extremities around my body. I have mild neuropathic pain, which I manage to control with 30mgs of Amiteiptyline at night.

Other medication I take are: Bsclofen - 40 mgs; Oxybutynin - 20mgs; Trimethoprim - 100mgs and Cialis - 5 Mgs. All those doses are daily.

I also take 5000iu vitamin D3 daily.

When I first got diagnosed, I chose to take Rebif as my disease modifying therapy. I was on it for just over 2 years before I came off it and started taking Tysabri. Again, I came off it after 2 and a bit years. I'm hoping it's third time lucky with Fingolimod.

Well that's about me, my illness and my meds all done, so I'm off.

Kind regards,