Friday 28 December 2012
Week 16
Well I thought it was about time I put er pen to, er paper and er, wrote to you lot. I can say that in a plural sense as my blog has had over 2,500 page views. So there are more than one of you reading this drivel. Unless, of course, it is just the one reader out there and you are reading it over and over again to make me feel good! Thanks, but to save yourself from getting square eyes, just hit the 'refresh' button, I'm sure that will work, and you won't have to read my inane waffle over and over.
I wonder if I can get myself up to a million page views by next week doing that?
Right, back to business. I don't even think about the possibility having a side effect or anything because I have had none. Nothing. I've been on the drug for nearly 4 months and I can honestly say that there hasn't been anything adverse going on with my body and I'm sure that nothing will. If something was going to happen, it would've done so by now.
You're thinking I'm a bit cocky, right? Well, you're right and wrong. Making bold statements is about as close to 'Living on the edge' as my body will allow. I always was a trappy so and so before I got ill and MS hasn't changed that.
Well that's it then, end of blog? Oh no, I plan to continue intruding in your lives with news of improvements with my bowels, my bladder and the fatigue that is practically non-existent.
Wishing everyone a very merry new year.
Dan
Friday 21 December 2012
Week 15
My Gilenya turned up on Monday. It was delivered bang on time by Dave W again just like the text said he would. Thanks, Dave W, I could set the clocks by you! *makes mental note to ask Dave W what the W is short for* Will he tell me? I don't know, his surname is none of my business, so we'll just have to wait and see. Although Don't lose sleep with excitement over this potential revelation as I will probably forget by February.
They deliver two months supply at a time, and when it arrives, I still have two weeks leftover from the last delivery. This gives them 14 days grace, should there ever be a distribution issue, although I am absolutely certain that should this situation arise, the delay will have nothing to do with Dave W. Oh no.
My fatigue is at an absolute minimum, which is fantastic. I did mention it to my consultant at my recent clinic appointment. I asked if she thought it was the Gilenya, but she didn't know. So then I asked if it could be the 'Placebo affect', and again, she sat on the fence! For what it's worth, I think it is.
The placebo effect, by the way, got its name from when people on trials were given either the actual drug or a placebo without knowing what they were given. Statistics show that the people not given the drug did actually improve slightly because they believed they had been given the drug and it was working.
Positive thinking can go a long way. A bit of food for thought to end on there.
Merry Christmas, everyone.
Dan
They deliver two months supply at a time, and when it arrives, I still have two weeks leftover from the last delivery. This gives them 14 days grace, should there ever be a distribution issue, although I am absolutely certain that should this situation arise, the delay will have nothing to do with Dave W. Oh no.
My fatigue is at an absolute minimum, which is fantastic. I did mention it to my consultant at my recent clinic appointment. I asked if she thought it was the Gilenya, but she didn't know. So then I asked if it could be the 'Placebo affect', and again, she sat on the fence! For what it's worth, I think it is.
The placebo effect, by the way, got its name from when people on trials were given either the actual drug or a placebo without knowing what they were given. Statistics show that the people not given the drug did actually improve slightly because they believed they had been given the drug and it was working.
Positive thinking can go a long way. A bit of food for thought to end on there.
Merry Christmas, everyone.
Dan
Saturday 15 December 2012
Week 14. - 15.12.12
I was at Southend hospital last week having my 3 month liver function test. That is basically giving blood. I don't know what they will do with it - they're obviously looking to see if something is present, (or missing) would be my guess, but what do I know? I'm not a scientist. I did ask the nurse, but her reply was as clear as mud - they were looking for any abnormalities. I guessed that much and needn't have bothered asking.
I don't know if I have already said, but when I wee, I self catheterise. I'm sure I have, but my memory is pretty crap these days. I can't blame it on my illness, because it always was quite bad, but now Ive got the perfect excuse to be lazy and not bother trying to remember things.
Where was I? Oh yeah, my waterworks. I've been performing intermittent self catheterisation for a couple of years. I do it this way every time I go. I use 6 or 7 catheters every time I go (unless I am out on the beer, and then it's 8-10!). 180 will last me just under a month, but over the last ten days, I've only been using 4 daily. I am taking in the same amounts of fluid each day - if not more in a bid to prove I can retain it better. I am passing more urine when I do go, so that means my ability to hold onto my bladder has improved. I think it's the Gilenya. What else could it be?
If the Gilenya is starting to take effect - and I firmly believe it is. Why is my ability to walk deteriorating so rapidly? I am struggling so much at the moment.
I am really looking forward to the new year. Starting off afresh. Close the chapter on this awful year I've had and get thinking positively again.
Dan
I don't know if I have already said, but when I wee, I self catheterise. I'm sure I have, but my memory is pretty crap these days. I can't blame it on my illness, because it always was quite bad, but now Ive got the perfect excuse to be lazy and not bother trying to remember things.
Where was I? Oh yeah, my waterworks. I've been performing intermittent self catheterisation for a couple of years. I do it this way every time I go. I use 6 or 7 catheters every time I go (unless I am out on the beer, and then it's 8-10!). 180 will last me just under a month, but over the last ten days, I've only been using 4 daily. I am taking in the same amounts of fluid each day - if not more in a bid to prove I can retain it better. I am passing more urine when I do go, so that means my ability to hold onto my bladder has improved. I think it's the Gilenya. What else could it be?
If the Gilenya is starting to take effect - and I firmly believe it is. Why is my ability to walk deteriorating so rapidly? I am struggling so much at the moment.
I am really looking forward to the new year. Starting off afresh. Close the chapter on this awful year I've had and get thinking positively again.
Dan
Sunday 9 December 2012
Week 13. 10.12.12
I declared my last blog as the three month mark, but officially 12 weeks isn't 3 months. (4.3 weeks in a month and all that) So NOW is three months on Gilenya.
When I last wrote, I left with lots of questions. I am not putting my recent problems down to a relapse. You KNOW when you are having a relapse. I have gone downhill of late, but I have had a difficult time. I was recently involved in an accident where my car was written off and that could be why I considered that I could be heading towards a relapse. I've rested a lot this week and I do feel better for it, so lets keep the thoughts of a relapse at bay. In fact, lets use a bit of positive thinking and forget all about it.
My fatigue is definitely a lot better. I finished off my bottle of vitamin B12 tablets over a week ago and I haven't bothered to replace them. I really do feel more alert, more awake.
I had an appointment to see my Consultant the other day. . It was my 3 monthly Gilenya review at the Royal London Hospital, which is a bit of a pain, as it is a 100 mile round trip from (the Costa Del) Southend. I've always considered it to be a worthwhile journey though, as you're in good hands with the Barts lot.
I saw a different consultant, and it turns out she is based in Southend. She is the new consultant there. Small world, eh? This is because Barts and Southend hospital are working closely together at the moment and there is now a Tysabri clinic set up there and they've even just started a few people on Gilenya. This means I can now have my clinic appointments locally whilst remaining under Barts and the London Trust, so all good news there
Dan
Wednesday 5 December 2012
Week 12
I've hit the 3 month mark. 12 weeks of Gilenya and I am definitely noticing some changes.
You may have observed that I call it Gilenya now and not Fingolimod anymore. Then again, you more than likely haven't. It says Gilenya on the box, so Gilenya it is. Fingolimod was the name of the drug when it was in trial form. Anyway, who cares, right?
I am still experiencing better bladder control and my bowels are nice and regular too. I am just hoping my balance improves. And my legs too, they're my Achilles heel these days. Ha! It's almost ironic. But seriously, my legs have really gone downhill since the summer.
I would even say that the weakness in my legs and my balance is so bad that the thought of me being in a relapse has crossed my mind over the last few days. I am falling over on a daily basis and although I haven't had any nasty falls, a few have been 'lucky'.
This blog is supposed to be about noticed changes, and here I am banging on about symptoms that have got worse!
I can only end this entry with questions - Am I having a relapse? Does that mean the Gilenya isn't working for me? Can some symptoms get better, whilst some are getting worse? answers on a postcard please?
Lets hope I can tell you the answers next time I write. (Check me and my cliffhanger out!)
Dan
Wednesday 28 November 2012
Week 11 - 28.11.12
It has been almost 12 weeks since I started taking Gilenya and I am happy to inform anyone reading this who may be contemplating trying the drug, that I have not experienced any side effects whatsoever.
Over the 3 months there have been ups and downs with my illness, but nothing more than the usual stuff. I have had a torrid 6 months. I spent 3 weeks in hospital after I fell over and broke my arm; I've suffered a relapse not long after my release from hospital. Also I was involved in a car accident recently where my car got written off. All of these incidents do have an effect on an MSers well being.
There have been a few changes over the last week though. Positive changes. Improvements, no less.
My fatigue feels better. I feel a lot more alert - Until the amitriptyline kicks in, in the evening, that is!
I've also been more regular in the bowels department. I never suffered with constipation before I got diagnosed with MS, but it's been a bit shitty since. Pun intended.
I've had control of my bladder since I was taught intermittent self catheterisation, but I have been holding onto it for longer and I am catheterising 4 times a day instead of 6. It's a piece of piss! Two puns in one blog. You are a lucky lot (person).
That's my observations of late noted. Lets hope things continue to improve and I can say that it definitely is the Gilenya. That would be happy days.
Dan
Over the 3 months there have been ups and downs with my illness, but nothing more than the usual stuff. I have had a torrid 6 months. I spent 3 weeks in hospital after I fell over and broke my arm; I've suffered a relapse not long after my release from hospital. Also I was involved in a car accident recently where my car got written off. All of these incidents do have an effect on an MSers well being.
There have been a few changes over the last week though. Positive changes. Improvements, no less.
My fatigue feels better. I feel a lot more alert - Until the amitriptyline kicks in, in the evening, that is!
I've also been more regular in the bowels department. I never suffered with constipation before I got diagnosed with MS, but it's been a bit shitty since. Pun intended.
I've had control of my bladder since I was taught intermittent self catheterisation, but I have been holding onto it for longer and I am catheterising 4 times a day instead of 6. It's a piece of piss! Two puns in one blog. You are a lucky lot (person).
That's my observations of late noted. Lets hope things continue to improve and I can say that it definitely is the Gilenya. That would be happy days.
Dan
Friday 16 November 2012
Week 10 - 16.11.12
I had an appointment with an Ophthalmologist the other day. It was a routine app that you need to have once you have been on Fingolimod for 2 months.
Ophthalmology is the branch of medical science that deals with the anatomy, functions and diseases of the eye. Yep, I admit it, I lifted that from Dictionary.com - They've got a bit of free advertising, so lets call it quits.
Anyway, I did the usual pyramid of letters test and they plonked some drops in my eyes so that my pupils dilated and looked into the back of my eyes with a couple of different gadgets. After being told everything is okay, I was sent to the photographer to have pictures taken of my pupils. The end result is that I've been discharged with no need for a follow up appointment.
Lets carry on with the Fingolimod then.
Dan
Ophthalmology is the branch of medical science that deals with the anatomy, functions and diseases of the eye. Yep, I admit it, I lifted that from Dictionary.com - They've got a bit of free advertising, so lets call it quits.
Anyway, I did the usual pyramid of letters test and they plonked some drops in my eyes so that my pupils dilated and looked into the back of my eyes with a couple of different gadgets. After being told everything is okay, I was sent to the photographer to have pictures taken of my pupils. The end result is that I've been discharged with no need for a follow up appointment.
Lets carry on with the Fingolimod then.
Dan
Monday 12 November 2012
Week 9. - 12.11.12
Lots has happend this week. Good and bad. Lets start with the good news.
There has been improvements with my symptoms on a few occasions where I genuinely wondered if the reason I was feeling so well was because of the Fingolimod. Anyway, I've noticed that my walking was less laboured, my fatigue was non existent and I had more movement in my fingers and toes. My neuropathic pain, which is minimal anyway was non existent. I really did feel tip top. It was never for long periods. Say a couple of hours one morning and the same again the next day in the afternoon or evening.
Now you've probably noticed the constant use of the past tense, so here comes the bad news.
On Friday, I was involved in a car accident. I was driving. Nobody was hurt, but I can comfortably tell you the airbags in my car work! The accident was the other driver's fault, by the way. I just hope Motability can get me a courtesy car with hand controls sooner, rather than later.
All day Saturday, I felt like crap. My walking was extremely difficult and I laid on the bed for most of the day. I was in a foul mood too, which worried me, because that is a sign of a relapse with me...
Not one to end on a downer, I was much better Sunday, so maybe I was in shock. Lets hope so.
Dan
Friday 2 November 2012
Week 8. 2/11/12
I've been taking Fingollimod for 8 weeks now. It's actually a couple of days over, but I've spent the last 48 hours trying to think of something to write. Not literally, mind. I'm not that dedicated to this blog!
8 weeks in and still no adverse effects at all. I just got de jà vue then. Replace the number eight with seven or six and I'm certain it has been said before.
I haven't noticed any improvements. I have spoken to a couple of people on Twitter who are from the States who have been on Fingolimod for around a year now and they both told me that after 3-4 months they noticed improvements. The drug is about stopping relapses, it doesn't repair myelin, but maybe the fact that your immune system is suppressed, your nervous system has a chance to repair itself free from attack from my white blood cells. I'm not a scientist, so don't quote me on that.
When I started Nataluzumab (Tysabri), I did pick up after a few months, so I'm crossing my fingers on this one. Like I've already said, I am hoping this medication will slow down my disease progression, and any improvements will be a very gratefully received bonus.
Dan.
Wednesday 24 October 2012
Week 7. - 24.10.12
Week 7
My Fingolimod turned up yesterday. The text informed me it would be delivered by 'Dave W between 12.15 and 14.40'. Dave W is employed by BUPA, and he knocked on the door right in the middle of the 2 hour and 25 minute time slot. No queues, delays or cancellations with those babies! I wonder how much it costs the NHS to have a 'profit making' private healthcare company deliver my medication? Mind you, compared to the amount Novartis are stinging them for the tablets, a 6 times a year delivery charge is probably like a drop in the ocean.
If I had money, I'd probably invest it in pharmaceutical companies. Big Pharma is a money making machine, no doubt about it. If they found a cure, these companies would go broke. On second thoughts, I'll keep the £7.36 in my pocket. Or go down the pub!
You probably don't want to hear me waffling on about my thoughts and views that are borderline conspiracy theory, you want me to update you on how I am getting on with the new medication, right?
Well, it is going great. 7 weeks in and it has made no difference to my life whatsoever. I already take 9 tablets and vitamins first thing in the morning, so what harm is one more? None of those regular injections with their side effects, etc. No more 80 mile round trips to a hospital in London for a 1 hour infusion. I'm am completely side effect free too.
From a disease modifying drug point of view - it's happy days from this happy bunny!
Kind regards,
Dan.
My Fingolimod turned up yesterday. The text informed me it would be delivered by 'Dave W between 12.15 and 14.40'. Dave W is employed by BUPA, and he knocked on the door right in the middle of the 2 hour and 25 minute time slot. No queues, delays or cancellations with those babies! I wonder how much it costs the NHS to have a 'profit making' private healthcare company deliver my medication? Mind you, compared to the amount Novartis are stinging them for the tablets, a 6 times a year delivery charge is probably like a drop in the ocean.
If I had money, I'd probably invest it in pharmaceutical companies. Big Pharma is a money making machine, no doubt about it. If they found a cure, these companies would go broke. On second thoughts, I'll keep the £7.36 in my pocket. Or go down the pub!
You probably don't want to hear me waffling on about my thoughts and views that are borderline conspiracy theory, you want me to update you on how I am getting on with the new medication, right?
Well, it is going great. 7 weeks in and it has made no difference to my life whatsoever. I already take 9 tablets and vitamins first thing in the morning, so what harm is one more? None of those regular injections with their side effects, etc. No more 80 mile round trips to a hospital in London for a 1 hour infusion. I'm am completely side effect free too.
From a disease modifying drug point of view - it's happy days from this happy bunny!
Kind regards,
Dan.
Thursday 18 October 2012
Week 6 - 18.10.11
Dear Anyone,
I have decided to update you on my disease modifying therapy on a weekly basis. This way you only have to endure my banal blog about nothing once every 7 days.
As all I have to inform you about Fingolimod is that I still haven't had any side effects at all in the 6 weeks that I've been on it, I am going to talk about me.
I've had a pretty crap summer. In June, I fell over whilst at home and as I landed, my arm twisted around my back, breaking it at the top where it joins the shoulder. Ouch!
I spent a month on a surgical ward as it needed to be operated on. I now have a plate and 7 pins in my arm. By the time physio got involved, I hadn't used my legs for nearly 3 weeks. The muscles in my legs were completely gone due to my inactivity and I had an effort standing unaided, and it took a while to be able to walk - with a Zimmer frame. I got discharged from hospital with the assurance of 6 weeks of daily physio.
I was making good progress with the rehab. I had a regime of core stability, leg and shoulder exercises and I was slowly rebuilding the muscles that I had lost whilst in hospital. Then my body decided to remind me that I have MS in the way it knows best - I had a relapse! This was confirmed with MRI results at the hospital when I went there for my first Fingolimod tablet, so they sent me home with a months supply of my new disease modifying drug and a 5 day course of oral steroids.
How am I now? I'm back from square one. The prednisolone did its job and I have re-started my exercises. I still need a Zimmer frame to walk, but my legs are getting stronger and I was using aids to walk anyway in the form of a stick or a crutch. I WILL get there eventually.
Hopefully my next blog will have something to do with Fingolimod. Or not...
Kind regards,
Dan
I have decided to update you on my disease modifying therapy on a weekly basis. This way you only have to endure my banal blog about nothing once every 7 days.
As all I have to inform you about Fingolimod is that I still haven't had any side effects at all in the 6 weeks that I've been on it, I am going to talk about me.
I've had a pretty crap summer. In June, I fell over whilst at home and as I landed, my arm twisted around my back, breaking it at the top where it joins the shoulder. Ouch!
I spent a month on a surgical ward as it needed to be operated on. I now have a plate and 7 pins in my arm. By the time physio got involved, I hadn't used my legs for nearly 3 weeks. The muscles in my legs were completely gone due to my inactivity and I had an effort standing unaided, and it took a while to be able to walk - with a Zimmer frame. I got discharged from hospital with the assurance of 6 weeks of daily physio.
I was making good progress with the rehab. I had a regime of core stability, leg and shoulder exercises and I was slowly rebuilding the muscles that I had lost whilst in hospital. Then my body decided to remind me that I have MS in the way it knows best - I had a relapse! This was confirmed with MRI results at the hospital when I went there for my first Fingolimod tablet, so they sent me home with a months supply of my new disease modifying drug and a 5 day course of oral steroids.
How am I now? I'm back from square one. The prednisolone did its job and I have re-started my exercises. I still need a Zimmer frame to walk, but my legs are getting stronger and I was using aids to walk anyway in the form of a stick or a crutch. I WILL get there eventually.
Hopefully my next blog will have something to do with Fingolimod. Or not...
Kind regards,
Dan
Friday 12 October 2012
Day 30 something. 12.10.12
Dear anybody,
Maybe you are wondering why I haven't blogged for a week, or maybe there is no one following it to have noticed? Anyway, if anybody is interested, I haven't written because I have had (and still have) absolutely nothing to tell you about any changes in my body with regards to Fingolimod since we last spoke.
I still haven't had any side effects since starting the drug nearly 40 days ago. It doesn't make riveting reading, but it is good to know.
I gota phone call the other day saying they will deliver 56 tablets on the 22nd October. So there're giving me two months supply. I'll have a week's supply leftover, so I have back-up should there be any delay in one of my future bi-monthly deliveries.
God, that was a boring blog. You were warned.
Regards,
Dan.
Maybe you are wondering why I haven't blogged for a week, or maybe there is no one following it to have noticed? Anyway, if anybody is interested, I haven't written because I have had (and still have) absolutely nothing to tell you about any changes in my body with regards to Fingolimod since we last spoke.
I still haven't had any side effects since starting the drug nearly 40 days ago. It doesn't make riveting reading, but it is good to know.
I gota phone call the other day saying they will deliver 56 tablets on the 22nd October. So there're giving me two months supply. I'll have a week's supply leftover, so I have back-up should there be any delay in one of my future bi-monthly deliveries.
God, that was a boring blog. You were warned.
Regards,
Dan.
Thursday 4 October 2012
Day 30. A month - 4.10.12
Dear somebody,
I went to Southend hospital yesterday to give them some blood. They will use it to do a liver function test. I have no idea why, well I do, there has obviously been an issue with Fingolimod and the effects it has on the liver. As for the small print? Don't ask me. I opted for ignorance, remember?
I need to give blood again in 2 months and one more time 3 months after that. Then I think that will be it.
Now that I have stopped taking Magnesium Citrate, I sleep through the night again without the need to get up to use the toilet. So guess what I have done? I've gone and bought some Cheleated Magnesium tablets. These ones aren't a laxative (I think), but I am still getting the benefits you are supposed to get from the Magesium. Stiffness free legs equals no need for Baclofen!
The Magnesium Citrate will come in handy though. Especially if my bowels haven't been emptied for a couple of days. Too much information, right? You probably didn't want to know that.
My Fingolimod turned up the other evening, about an hour after I posted my last blog. See, fate, I shit it.
Regards,
Dan
I went to Southend hospital yesterday to give them some blood. They will use it to do a liver function test. I have no idea why, well I do, there has obviously been an issue with Fingolimod and the effects it has on the liver. As for the small print? Don't ask me. I opted for ignorance, remember?
I need to give blood again in 2 months and one more time 3 months after that. Then I think that will be it.
Now that I have stopped taking Magnesium Citrate, I sleep through the night again without the need to get up to use the toilet. So guess what I have done? I've gone and bought some Cheleated Magnesium tablets. These ones aren't a laxative (I think), but I am still getting the benefits you are supposed to get from the Magesium. Stiffness free legs equals no need for Baclofen!
The Magnesium Citrate will come in handy though. Especially if my bowels haven't been emptied for a couple of days. Too much information, right? You probably didn't want to know that.
My Fingolimod turned up the other evening, about an hour after I posted my last blog. See, fate, I shit it.
Regards,
Dan
Tuesday 2 October 2012
Day 28. 4 weeks - 2.10.12
Dear Someone,
I am going to the hospital tomorrow to give them some blood so they can do a liver function test. It will mark 1 month of being on Fingolimod. 28 days to be precise, but a month's supply of any medication in the medical world lasts 4 weeks.
I am still awaiting delivery of next month's medication. They 're cutting it a bit fine - I only have one more tablet left! I'm not too worried though. They have assured me that it will be here this afternoon, and I have no doubts that it won't be soon. In fact, I'll tempt fate here and say, "I bet it is in transit as I type."
I'm not sure where the supply comes from. My hospital is the Royal London Hospital in Whitechapel, and I'm guessing it will be dispensed by their pharmacy. That's a fifty mile trip, so they must be en route.
Kind regards,
Dan
I am going to the hospital tomorrow to give them some blood so they can do a liver function test. It will mark 1 month of being on Fingolimod. 28 days to be precise, but a month's supply of any medication in the medical world lasts 4 weeks.
I am still awaiting delivery of next month's medication. They 're cutting it a bit fine - I only have one more tablet left! I'm not too worried though. They have assured me that it will be here this afternoon, and I have no doubts that it won't be soon. In fact, I'll tempt fate here and say, "I bet it is in transit as I type."
I'm not sure where the supply comes from. My hospital is the Royal London Hospital in Whitechapel, and I'm guessing it will be dispensed by their pharmacy. That's a fifty mile trip, so they must be en route.
Kind regards,
Dan
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,
Dan.
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,
Dan.
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.
Yours,
Dan
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.
Yours,
Dan
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.
Regards,
Dan
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.
Regards,
Dan
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,
Dan
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,
Dan
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,
Dan.
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,
Dan.
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,
Dan
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,
Dan
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.
Regards,
Dan
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.
Regards,
Dan
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,
Dan
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,
Dan
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.
Regards,
Dan
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.
Regards,
Dan
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.
Yours,
Dan
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.
Yours,
Dan
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...
Regards,
DEMYELINATING (But not for much longer) DAN
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...
Regards,
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'
Dan
Ps
I can't believe what a mong I looked in that photo I took of myself in hospital yesterday!
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'
Dan
Ps
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,
Dan
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,
Dan
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