I've been speaking about stuff other than Gilenya recently, and I do apologise. You aren't interested in the previous medications that I've tried that haven't worked; you want to hear about the tablet I take that does work.
Gilenya does have a bad press. The license was withdrawn after somebody died after taking a single dose, this time last year. Scary right? Well, when you take Gilenya, it reduces your heart rate. My pulse varies between 70 and 85 on average, and it dropped to 67 after my first dose. That isn't an issue, but it is believed that the person who died had underlying heart problems which would've contributed to the fatality. So it isn't the actual drug that can kill you, but a side effect can. Well, that's okay then, right? No, it isn't, is it?
So how do you know whether you have underlying heart problems that possibly haven't surfaced yet? We don't, that is why you have to have your first dose of Gilenya in a hospital where you have spend at least 6 hours (take a book). You are wired up to an ECG machine and the activity of your heart is constantly monitored. If they have any concerns, they'll keep you in overnight. Nothing is left to chance.
This is why I can (rightly or wrongly) state that I believe that Gilenya is initially a safe drug to take. There. I said it. Put my head on the chopping block then, but that is MY opinion, a patients perspective. Nobody knows the long term effects of Gilenya. That's a 'wait and see' situation, time will tell, etc, etc. But thats just like all disease modifying drugs, as they've only been around for 20 or so years at the most.
I'm not sure about the risks of... you ready for it?... Progressive Multifocal Leukoencephalopathy (PML) as I believe it works in a similar way to Tysabri, which does have a PML risk. Especially if you are JC virus positive like me.
I would like to thank Apple for the auto correct function on their devices that kicks in and predicts Leukoencephalopathy after the first five letters.
Have a happy Easter, all. Eat too much chocolate and drink too much beer. I will be.
Dan
Friday 29 March 2013
Friday 22 March 2013
Week 28 (22/3/13)
Last week I banged on a bit about the different types of disease modifying drugs I've tried. I forgot to mention one. Look, it's not my fault. I have got MS you know!
After I came off Tysabri last year, I tried low dose Naltrexone (LDN). For those that don't know, Naltrexone is an Opiate antagonist. In other words, it is given to heroin addicts (and other opioids) to stop it from working. It is believed that the feel good hormones it creates helps with the 'cold turkey' the addicts endure coming off their preferred choice of drug.
Trials were done with Naltrexone in low doses in MS, but from what I gather, the results were inconclusive, so it wasn't adopted as a treatment for this illness. That means they never licensed the drug for MS so you can't get it on the NHS.
I was on it for about 4 months. The increase of serotonin in my brain was nice and the world was a much brighter place. Did I say the words 'at first' in that last sentence? Well I should've done. Other than the initial rush of Euphoria, it didn't do anything to help with this disease.
I know people that swear by LDN, they say it has done wonders for them, so just like we all know about MS - we're all different, and what works for some, doesn't work for others. Story of my (MS) life, unfortunately. As LDN isn't licensed in this country, it isn't easy to get. Some GPs will prescribe it, but most won't.
I had to pay for a private prescription and pay for a pharmacy that dispenses it to post it to me. All sounds a bit 'cloak and dagger' but it ain't. It's perfectly legal and you don't know if it is going to help you or not until you try it. The cost is minimal - about 20 quid a month.
I was going to give it a bash for 6 months, but in June, I fell over and broke my arm. I was taken into hospital where they gave me morphine, but I was still in pain, so they gave me some more. After the third dose they had to stop. I should've been as high as a kite, but I was still in a lot of pain. It was about a week later that I realised the LDN (an opiate antagonist, remember?) would've been stopping the morphine from working. I haven't taken it since.
I can't believe I've spent this whole blog talking about LDN? I don't have any news about Gilenya. It seems to be stabilising me(ish), and that is all I am after. I haven't done my core stability, or my leg exercises for a few weeks, so I need to knuckle down and get back into them, as there has been a bit of a dip in my physical well being.
That progression calculator really pissed me off. Made me a bit angry with the world, but I'm over that now, so onwards and upwards. And all that.
I've got a photo of my X-ray, and remember: paracetamol is all had for it.
Regards,
Dan
After I came off Tysabri last year, I tried low dose Naltrexone (LDN). For those that don't know, Naltrexone is an Opiate antagonist. In other words, it is given to heroin addicts (and other opioids) to stop it from working. It is believed that the feel good hormones it creates helps with the 'cold turkey' the addicts endure coming off their preferred choice of drug.
Trials were done with Naltrexone in low doses in MS, but from what I gather, the results were inconclusive, so it wasn't adopted as a treatment for this illness. That means they never licensed the drug for MS so you can't get it on the NHS.
I was on it for about 4 months. The increase of serotonin in my brain was nice and the world was a much brighter place. Did I say the words 'at first' in that last sentence? Well I should've done. Other than the initial rush of Euphoria, it didn't do anything to help with this disease.
I know people that swear by LDN, they say it has done wonders for them, so just like we all know about MS - we're all different, and what works for some, doesn't work for others. Story of my (MS) life, unfortunately. As LDN isn't licensed in this country, it isn't easy to get. Some GPs will prescribe it, but most won't.
I had to pay for a private prescription and pay for a pharmacy that dispenses it to post it to me. All sounds a bit 'cloak and dagger' but it ain't. It's perfectly legal and you don't know if it is going to help you or not until you try it. The cost is minimal - about 20 quid a month.
I was going to give it a bash for 6 months, but in June, I fell over and broke my arm. I was taken into hospital where they gave me morphine, but I was still in pain, so they gave me some more. After the third dose they had to stop. I should've been as high as a kite, but I was still in a lot of pain. It was about a week later that I realised the LDN (an opiate antagonist, remember?) would've been stopping the morphine from working. I haven't taken it since.
I can't believe I've spent this whole blog talking about LDN? I don't have any news about Gilenya. It seems to be stabilising me(ish), and that is all I am after. I haven't done my core stability, or my leg exercises for a few weeks, so I need to knuckle down and get back into them, as there has been a bit of a dip in my physical well being.
That progression calculator really pissed me off. Made me a bit angry with the world, but I'm over that now, so onwards and upwards. And all that.
I've got a photo of my X-ray, and remember: paracetamol is all had for it.
Regards,
Dan
Friday 15 March 2013
Week 27 (15.3.13)
If you read my blog last week, you wont be surprised to hear that I've had a week of feeling sorry for myself, but I feel much better for it. I've decided to plan my future and I've made a few potentially life changing decisions. Nothing life changing (erm, hang on, you just said...), but I need to be prepared for the worst case scenario, just in case.
I've been reading a few Gilenya blogs this week. This one gets put on the MS-UK website as well as half a dozen others. The one's I read were from people in the States, and they've been on Gilenya for well over a year. A few have been on it for longer. Since it was a stage 3 trial drug, no less. It is quite common to be kept on a trial drug after the trial has finished.
The general consensus seems to be that there hasn't been life changing improvements, just minor ones AND their illness has stabilised. This is what exited me. I have been slowly deteriorating since I was diagnosed 7 years ago. We all want improvements, but I'll take no disease progression right now. It's important I find a drug that halts this seemingly relentless march towards progressive oblivion. Keep me at this level for a couple for a couple of years please?
I have tried other drugs. I was on Rebif for two and a half years. Can I call it by its brand name, or shall I simply call it Interferon? Well, it never done me any good, so I'm not giving Rebif any free bloody advertising. Oh, hang on...?
As my relapses were increasing in pace and severity despite the disease modifying drugs, I was deemed eligible for more aggressive medication. That's when I chose to go on Tysabri (Nataluzimab). I was tested for JC virus before my first infusion, and although it came back positive, I still opted to take the drug.
JC virus can be found in the blood of approximately 50% of the population of those tested. It is a harmless virus, provided it doesn't get into a nervous system of someone where there is little to no immune system. Left untouched, JC virus can mutate and become Progressive multifocal leukoencephalopathu (PML) - Of course I looked that up. I can't even say it, let alone spell it! Where was I? PML. Tysabri works by stopping your immune system from getting into your nervous system and attacking the myelin sheath that protects the nerves. You need to think long and hard about taking Tysabri if you're JC+.
I decided it was worth the risk, and I went on to have 30 monthly infusions before I came off Tysabri at the start of last year. I stopped taking it because my deterioration was picking up speed, I wasn't convinced it was still working and I felt that I needed to take a break from the drug and assess my situation. By the time I had been off Tysabri for three months, my Neuro informed me that in that time it would have completely 'washed' out of my body, so he asked if I would be interested in trying a new medicine that had just been re-licensed. I always keep up to date on research matters (Time to plug the MS Trust website) and I knew the new drug was a tablet and it was called FTY720, or Fingolimod, or Gilenya and this is where I'm at. Fingers crossed.
Happy Friday, all.
Dan
I've been reading a few Gilenya blogs this week. This one gets put on the MS-UK website as well as half a dozen others. The one's I read were from people in the States, and they've been on Gilenya for well over a year. A few have been on it for longer. Since it was a stage 3 trial drug, no less. It is quite common to be kept on a trial drug after the trial has finished.
The general consensus seems to be that there hasn't been life changing improvements, just minor ones AND their illness has stabilised. This is what exited me. I have been slowly deteriorating since I was diagnosed 7 years ago. We all want improvements, but I'll take no disease progression right now. It's important I find a drug that halts this seemingly relentless march towards progressive oblivion. Keep me at this level for a couple for a couple of years please?
I have tried other drugs. I was on Rebif for two and a half years. Can I call it by its brand name, or shall I simply call it Interferon? Well, it never done me any good, so I'm not giving Rebif any free bloody advertising. Oh, hang on...?
As my relapses were increasing in pace and severity despite the disease modifying drugs, I was deemed eligible for more aggressive medication. That's when I chose to go on Tysabri (Nataluzimab). I was tested for JC virus before my first infusion, and although it came back positive, I still opted to take the drug.
JC virus can be found in the blood of approximately 50% of the population of those tested. It is a harmless virus, provided it doesn't get into a nervous system of someone where there is little to no immune system. Left untouched, JC virus can mutate and become Progressive multifocal leukoencephalopathu (PML) - Of course I looked that up. I can't even say it, let alone spell it! Where was I? PML. Tysabri works by stopping your immune system from getting into your nervous system and attacking the myelin sheath that protects the nerves. You need to think long and hard about taking Tysabri if you're JC+.
I decided it was worth the risk, and I went on to have 30 monthly infusions before I came off Tysabri at the start of last year. I stopped taking it because my deterioration was picking up speed, I wasn't convinced it was still working and I felt that I needed to take a break from the drug and assess my situation. By the time I had been off Tysabri for three months, my Neuro informed me that in that time it would have completely 'washed' out of my body, so he asked if I would be interested in trying a new medicine that had just been re-licensed. I always keep up to date on research matters (Time to plug the MS Trust website) and I knew the new drug was a tablet and it was called FTY720, or Fingolimod, or Gilenya and this is where I'm at. Fingers crossed.
Happy Friday, all.
Dan
Friday 8 March 2013
Week 26
I have officially reached the 6 months on Gilenya point. It's gone quick. If asked, I would say it doesn't feel like I've been on it for half that time, but I haven't, so I won't.
I got through February falling over only 3 times *pats self on the back*, and one of the times was when I'd had one or two or six drinks too many. The good thing about that was the alcohol numbed the pain. As it didn't hurt, should I omit it? If I do, it won't be a problem with those that disagree with me because I would've deleted this part of the paragraph and you won't have even known I debated with myself on the subject. If I have left it in, you'll wonder if I'm going insane by arguing with myself. Thinking about it, I would also leave out the one where I had a urinary tract infection. Those little buggars really kick my symptoms off and mess up my legs and because I self catheterise, I am prone to them. I do keep myself clean, but some of the pubs I frequent, get a zero out of ten when it comes to toilet hygiene. I also found out that the antibiotics that I have been taking in a low dose as prophylaxis (look it up) for nearly two years will be having no effect anymore and probably haven't been for the last year. Prophylaxis means prevention, by the way.
I was reading a Multiple Sclerosis blog at the weekend. This blog is done by my consultant and his team. One entry in particular caught my eye. It is a progression calculator of sorts. It is a graph showing the progression rates of others. I compared the length of time I've had this illness to my Expanded Disability Status Scale (EDSS) and I can confirm that my MS has progressed faster than 95% of the people on the scale. I was never in the top five percent in any of my subjects at school, so this is a real accolade here. NOTE TO READER: I hope you can detect the massive sarcasm in this part of the blog?
To continue in the same sarcastic vein, it gives me joy to inform you that in the 7 years since diagnosis, I have deteriorated to EDSS7 and if it continues on this present course, I'll be at the EDSS stage 9 in 2 years time - where I will be bedridden. And to think some people with MS's biggest fear is spending their latter years in a wheelchair. I'll be 40 in 2 years.
None of the above will include the impact new drugs will have on us MSers over the next few years, and Gilenya is a new drug, so lets hope it changes the course that I am on. I really need it to. It's more or less a life or death situation I am in now.
If anyone is interested to see how they are doing in comparison to approximately 28,000 North American people with MS:
http://multiple-sclerosis-research.blogspot.co.uk/2013/03/predicting-ms-explained.html?m=1
Blogger doesn't create hyperlinks, so you will have to copy and paste the URL into your browser bar. I do, however, suggest you DON'T look. I genuinely wished I hadn't. Whatever happened to my old mantra that 'ignorance is bliss'?
Happy weekend.
Dan
I got through February falling over only 3 times *pats self on the back*, and one of the times was when I'd had one or two or six drinks too many. The good thing about that was the alcohol numbed the pain. As it didn't hurt, should I omit it? If I do, it won't be a problem with those that disagree with me because I would've deleted this part of the paragraph and you won't have even known I debated with myself on the subject. If I have left it in, you'll wonder if I'm going insane by arguing with myself. Thinking about it, I would also leave out the one where I had a urinary tract infection. Those little buggars really kick my symptoms off and mess up my legs and because I self catheterise, I am prone to them. I do keep myself clean, but some of the pubs I frequent, get a zero out of ten when it comes to toilet hygiene. I also found out that the antibiotics that I have been taking in a low dose as prophylaxis (look it up) for nearly two years will be having no effect anymore and probably haven't been for the last year. Prophylaxis means prevention, by the way.
I was reading a Multiple Sclerosis blog at the weekend. This blog is done by my consultant and his team. One entry in particular caught my eye. It is a progression calculator of sorts. It is a graph showing the progression rates of others. I compared the length of time I've had this illness to my Expanded Disability Status Scale (EDSS) and I can confirm that my MS has progressed faster than 95% of the people on the scale. I was never in the top five percent in any of my subjects at school, so this is a real accolade here. NOTE TO READER: I hope you can detect the massive sarcasm in this part of the blog?
To continue in the same sarcastic vein, it gives me joy to inform you that in the 7 years since diagnosis, I have deteriorated to EDSS7 and if it continues on this present course, I'll be at the EDSS stage 9 in 2 years time - where I will be bedridden. And to think some people with MS's biggest fear is spending their latter years in a wheelchair. I'll be 40 in 2 years.
None of the above will include the impact new drugs will have on us MSers over the next few years, and Gilenya is a new drug, so lets hope it changes the course that I am on. I really need it to. It's more or less a life or death situation I am in now.
If anyone is interested to see how they are doing in comparison to approximately 28,000 North American people with MS:
http://multiple-sclerosis-research.blogspot.co.uk/2013/03/predicting-ms-explained.html?m=1
Blogger doesn't create hyperlinks, so you will have to copy and paste the URL into your browser bar. I do, however, suggest you DON'T look. I genuinely wished I hadn't. Whatever happened to my old mantra that 'ignorance is bliss'?
Happy weekend.
Dan
Friday 1 March 2013
Week 25
My Gilenya turned up last week. As always, it turned up smack bang in the middle of the 12.25 - 14.20 delivery slot. I cannot actually confirm the validity of that statement because I wasn't home when it was actually delivered, but it is ALWAYS delivered on time, so lets just assume it was and move on.
My new car is almost ready. They're putting a hoist in the boot so I can get my scooter out in one piece, rather than constantly assembling and disassembling it every time I use the bloody thing. I'm not complaining though. Rather that than a wheelchair. I hate going anywhere in a wheelchair. People treat you like you're a small child in a pushchair, ignore you and communicate with the person pushing you instead. It makes you want to scream, "I AM PHYSICALLY DISABLED, NOT MENTALLY!" But, hey, that's just society. Society can't help it, so I shouldn't really worry about it.
I am writing this blog on Thursday 28th Feb. That means I took my 176th tablet of Gilenya this morning. That's 88mg of the stuff, at an estimated cost of £7,207.20 to the British taxpayer (me included). Thank you very much.
In case the payers of tax are wondering if you're getting value for money, I can confirm that you are because I am worth every penny!! In all honestly, it is a therapy that has been as smooth a ride as possible. Not a single side effect at all and the benefits of better bowel and bladder control and practically zero fatigue most of the time. Unfortunately, there hasn't been any improvement with my walking - yet, which is a shame because my legs are the part of my body that lets the side down, but you have to stay positive, which is why I said "yet" back there. Also these disease modifying drugs aren't designed to make you better. They're not even designed to stop you getting worse. They are supposed to slow down the rate at which you deteriorate. Maybe I am being greedy by wanting improvements, but I can't help it. You'd be the same.
There are probably one or two of you out there contemplating switching from you current medication to Gilenya. Especially if you're having to regularly self inject. If I can give anyone in this scenario a piece of advice, it would be: If your current medication is keeping you relapse free, stick with it. As annoying as injectable medicine is, (I took Rebif for two and a half years) if it's doing its job, then great, that is what you're aiming for. The grass isn't always greener on the other side. If you are on medication, but still having regular relapses, then you are eligible for Gilenya, ring up your Neurologist and beg them for some. Move to an area where the primary care trust say yes if you have to, but ask. It has been fantastic for me and hopefully is for others too.
Keep well,
Dan
My new car is almost ready. They're putting a hoist in the boot so I can get my scooter out in one piece, rather than constantly assembling and disassembling it every time I use the bloody thing. I'm not complaining though. Rather that than a wheelchair. I hate going anywhere in a wheelchair. People treat you like you're a small child in a pushchair, ignore you and communicate with the person pushing you instead. It makes you want to scream, "I AM PHYSICALLY DISABLED, NOT MENTALLY!" But, hey, that's just society. Society can't help it, so I shouldn't really worry about it.
I am writing this blog on Thursday 28th Feb. That means I took my 176th tablet of Gilenya this morning. That's 88mg of the stuff, at an estimated cost of £7,207.20 to the British taxpayer (me included). Thank you very much.
In case the payers of tax are wondering if you're getting value for money, I can confirm that you are because I am worth every penny!! In all honestly, it is a therapy that has been as smooth a ride as possible. Not a single side effect at all and the benefits of better bowel and bladder control and practically zero fatigue most of the time. Unfortunately, there hasn't been any improvement with my walking - yet, which is a shame because my legs are the part of my body that lets the side down, but you have to stay positive, which is why I said "yet" back there. Also these disease modifying drugs aren't designed to make you better. They're not even designed to stop you getting worse. They are supposed to slow down the rate at which you deteriorate. Maybe I am being greedy by wanting improvements, but I can't help it. You'd be the same.
There are probably one or two of you out there contemplating switching from you current medication to Gilenya. Especially if you're having to regularly self inject. If I can give anyone in this scenario a piece of advice, it would be: If your current medication is keeping you relapse free, stick with it. As annoying as injectable medicine is, (I took Rebif for two and a half years) if it's doing its job, then great, that is what you're aiming for. The grass isn't always greener on the other side. If you are on medication, but still having regular relapses, then you are eligible for Gilenya, ring up your Neurologist and beg them for some. Move to an area where the primary care trust say yes if you have to, but ask. It has been fantastic for me and hopefully is for others too.
Keep well,
Dan
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