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
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