As I am on roll talking about Gilenya's side effects, and that is the actual reason you are reading, I'm going to talk about it a bit more.
Gilenya can cause a swelling of the macula (a spot in the centre of the retina of the eye), generally within 3-4 months of starting treatment. Macular swelling can cause symptoms similar to those that occur with an attack of optic neuritis, or may not be noticed at all.
I haven't experienced any problems with my vision since I started taking Gilenya and when I went to see (irony) an Ophthalmologist (eye doctor) for a routine eye examination after 3 months, they couldn't see (irony again) any swelling inside my retinas. As they were happy that I had swerved this potential side effect and I didn't need to see (last one) me anymore, they discharged me. Yay!
I did have an incident with my left eye back in 1998 when I woke up one morning and my vision in that eye was a bit blurred. Nothing massive, but after a few weeks I went to see (that really is the last one) an optician. He had a look (no more puns, eye promise) and said I needed to go to the eye unit at my local hospital and see (sorry) an ophthalmologist. After they had examined me, they told me that there was something behind my eye? They said it was more than likely fluid, but if it didn't clear up within two months to go back and they would investigate further. Did you notice that I resisted the urge to say look instead of investigate back then?
I've still got it to this day and I've always wondered that if I had gone back, would it have led to a diagnosis of MS seven years before I had my first official relapse and subsequent diagnosis? For the record, I believe I made the right decision to not look further into my eye issue when I was 24.
In other news, I think the fatigue is slowly working its way back into my body. That dark fuzzy mist is making an appearance. Only sporadically, but it's starting to rear its ugly head once more. Only for an hour, or two, but it's there nonetheless. I did say a few weeks ago that it cropped up for an hour or two 'here and there', but I do think the regularity has increased; not every day, but definitely 2 or 3 times a week. I am writing this on Tuesday and I've had some this morning. I also had it Sunday afternoon. I'll monitor it this week and let you know how the next few days have gone when I publish this blog on Friday. It's definitely something that needs keeping an eye on...
Eye apologise for the puns, but I did warn you of my returning to foolishness after such a sensible blog entry last week.
Enjoy your weekend,
Dan
Friday 26 April 2013
Friday 19 April 2013
Week 32
Last week I gave you my opinions on the drug BG12, shortly before I did a couple of minutes research and discovered I was talking out of my backside. This time I have made an effort and got my facts right about the POSSIBLE side effects of taking Gilenya before I preach to you.
The most common side effects during the trials of Gilenya were headache, influenza, diarrhoea, back pain, abnormal liver tests and cough. I put the word 'possible' in capital letters in the last paragraph because some, none even are guaranteed. If you've read my blog more than once (doubtful), you will know that I've had no side effects whatsoever - except maybe one, flushing. Hang on, that's not on the list, you're thinking? It isn't, but I copied and pasted the above list from the National MS Society website. I read about flushing elsewhere. I do seem more heat sensitive of late, which means a slight rise in temperature has me whipping off layers of clothes. I'm not great in the heat, post diagnosis, but I do feel like the sensitivity has increased. Lets see how I cope with the long, hot British summer this year!!!!!
Note to reader: I express sarcasm through exclamation marks.
Gilenya may cause liver problems. Your MS specialist nurse will do a blood test to check your liver functions before starting treatment. I had one on the day of my first dose and another one after Three months. Once you are on treatment, they want you to tell them if you have any issues with nausea, vomiting, stomach pain, loss of appetite, unusual tireness, dark urine or a yellowish tint to your skin or the whites of your eyes. As you know, I've had none of these side effects. That looks a lengthy list, but read the list of possible side effects on a packet of paracetamol, they list drowsyness as well as insomnia, or diarrhoea as well as constipation, so don't let it put you off the treatment, if it is something you're considering.
Like I've already said, I haven't noticed any of the side effects I've mentioned in this blog (except possibly flushing).
Before I go, I haven't fallen over once this month and we're almost 3 weeks into April! I must be due a double fall this weekend. Lets see how I go...
I apologise if this blog comes across as sensible and informative. I'll be back to my usual puerile nonsense next week.
Happy reading,
Dan
The most common side effects during the trials of Gilenya were headache, influenza, diarrhoea, back pain, abnormal liver tests and cough. I put the word 'possible' in capital letters in the last paragraph because some, none even are guaranteed. If you've read my blog more than once (doubtful), you will know that I've had no side effects whatsoever - except maybe one, flushing. Hang on, that's not on the list, you're thinking? It isn't, but I copied and pasted the above list from the National MS Society website. I read about flushing elsewhere. I do seem more heat sensitive of late, which means a slight rise in temperature has me whipping off layers of clothes. I'm not great in the heat, post diagnosis, but I do feel like the sensitivity has increased. Lets see how I cope with the long, hot British summer this year!!!!!
Note to reader: I express sarcasm through exclamation marks.
Gilenya may cause liver problems. Your MS specialist nurse will do a blood test to check your liver functions before starting treatment. I had one on the day of my first dose and another one after Three months. Once you are on treatment, they want you to tell them if you have any issues with nausea, vomiting, stomach pain, loss of appetite, unusual tireness, dark urine or a yellowish tint to your skin or the whites of your eyes. As you know, I've had none of these side effects. That looks a lengthy list, but read the list of possible side effects on a packet of paracetamol, they list drowsyness as well as insomnia, or diarrhoea as well as constipation, so don't let it put you off the treatment, if it is something you're considering.
Like I've already said, I haven't noticed any of the side effects I've mentioned in this blog (except possibly flushing).
Before I go, I haven't fallen over once this month and we're almost 3 weeks into April! I must be due a double fall this weekend. Lets see how I go...
I apologise if this blog comes across as sensible and informative. I'll be back to my usual puerile nonsense next week.
Happy reading,
Dan
Friday 12 April 2013
Week 31
My latest batch of Gilenya turned up on Monday. I can't believe it's been two months since my last delivery in February. Mind you, the weather we've had in the UK of late could easily lead you into the false belief that it is still February. We've had snow on and off since the end of November - and it's bloody April!! It has turned though, and spring is finally here. They reckon it will be 18 degrees celsius at the weekend in Essex.
There's been a bit about Tecfidera or dimethyl fumarate ( lets just call it BG12, shall we?) in the press recently. Apparently it is going to cost about $55,000 per annum. That's US dollars, so I make that about £35,000 in English money - At this point in time, I need to point out that my mental arithmetic is crap, but that's not MY fault...
Back to money. According to my maths BG12 is going to be over twice as expensive as Gilenya. The same with Tysabri, come to think of it. Why is that? Don't ask me, but if you did, I would tell you that I assume that there is less risk involved and the company that developed the drug (Biogen) are using this fact to blackmail our primary care trusts (PCT) into paying massively inflated fees for drugs with a better safety record. The problem with this is that the PCT's governing bodies won't 'play ball' and and life changing medication won't be adopted as it isn't cost effective. The loser here is obviously the patient, as per
Call me an old socialist if you like, but I believe that profit making organisations shouldn't be involved in the process of researching and producing new medicine. Our Governments should take control of this, but unfortunately we need a time machine to go back 50 years to when services were in the public domain and they hadn't realised it was cost effective to outsource various services to private corporations. Anyway, I thought BG12 worked in a similar way to Gilenya and Tysabri. Eg, it stops the white blood cells (immune system) getting past the lymph nodes and into the nervous system, therefore proposing a risk to people that are positive with JC virus. I probably should make more of an effort and do a bit of research on the stuff I write about on here, but that is far too organised for me. I will find out about how BG12 works and get back to you... one day.
Enjoy your weekend,
Dan
Ps,
I just had a look on Wikipedia, and it says that BG12 is NOT an immunosuppressent. That means you've just wasted five minutes of your life reading this blog, sorry.
There's been a bit about Tecfidera or dimethyl fumarate ( lets just call it BG12, shall we?) in the press recently. Apparently it is going to cost about $55,000 per annum. That's US dollars, so I make that about £35,000 in English money - At this point in time, I need to point out that my mental arithmetic is crap, but that's not MY fault...
Back to money. According to my maths BG12 is going to be over twice as expensive as Gilenya. The same with Tysabri, come to think of it. Why is that? Don't ask me, but if you did, I would tell you that I assume that there is less risk involved and the company that developed the drug (Biogen) are using this fact to blackmail our primary care trusts (PCT) into paying massively inflated fees for drugs with a better safety record. The problem with this is that the PCT's governing bodies won't 'play ball' and and life changing medication won't be adopted as it isn't cost effective. The loser here is obviously the patient, as per
Call me an old socialist if you like, but I believe that profit making organisations shouldn't be involved in the process of researching and producing new medicine. Our Governments should take control of this, but unfortunately we need a time machine to go back 50 years to when services were in the public domain and they hadn't realised it was cost effective to outsource various services to private corporations. Anyway, I thought BG12 worked in a similar way to Gilenya and Tysabri. Eg, it stops the white blood cells (immune system) getting past the lymph nodes and into the nervous system, therefore proposing a risk to people that are positive with JC virus. I probably should make more of an effort and do a bit of research on the stuff I write about on here, but that is far too organised for me. I will find out about how BG12 works and get back to you... one day.
Enjoy your weekend,
Dan
Ps,
I just had a look on Wikipedia, and it says that BG12 is NOT an immunosuppressent. That means you've just wasted five minutes of your life reading this blog, sorry.
Saturday 6 April 2013
Week 30
30 weeks! Wow, time flies when you're having fun!
This has been my hardest entry to do yet. I find it difficult telling you about my Gilenya 'journey' when I rarely have anything new to report. That's probably why I've been going off in tangents speaking about other stuff recently.
So, Gilenya: I think it's working. I'm sure it is? My fatigue has improved greatly, as has my visits to the toilet. I use it less to wee, and more out of the other end. I empty my bowels more or less every day. They haven't been this regular since before I got diagnosed with this illness.
Although my fatigue is still minimal. I have been wondering if (or when) it is going to start to rear its ugly head again. That does sound somewhat pessimistic, but when I started taking Tysabri, I noticed improvements within a few months, but within six, they had subsided and symptoms had returned to their pre-drug levels. Therefore I feel my pessimism is more of a realism. Long may it prove me wrong. I will keep you all updated on my fatigue situation.
I do still get a couple of hours here and there where fatigue stops me from doing anything. But we're talking once a week, and it certainly doesn't reach the level of where I have to go to bed and sleep. I just mong out in front of the telly for a bit and don't move. Hang on, I do a bit of that anyway, so what's the difference?
I managed to get through March having 5 falls. That ain't bad. One of the falls was after I had been put in a situation where I had walked further than my legs would normally allow and they gave up on me. Just as I reached the car too! Two were drunken trips and the remaining two were sober trips. I'm fall free so far in April. Yeah, yeah, it's only the 5th, but, so what? Let me congratulate myself here. I probably shouldn't gloat though, because using the law of averages, I am due one any day now...
Have a fantastic weekend, all
Dan
This has been my hardest entry to do yet. I find it difficult telling you about my Gilenya 'journey' when I rarely have anything new to report. That's probably why I've been going off in tangents speaking about other stuff recently.
So, Gilenya: I think it's working. I'm sure it is? My fatigue has improved greatly, as has my visits to the toilet. I use it less to wee, and more out of the other end. I empty my bowels more or less every day. They haven't been this regular since before I got diagnosed with this illness.
Although my fatigue is still minimal. I have been wondering if (or when) it is going to start to rear its ugly head again. That does sound somewhat pessimistic, but when I started taking Tysabri, I noticed improvements within a few months, but within six, they had subsided and symptoms had returned to their pre-drug levels. Therefore I feel my pessimism is more of a realism. Long may it prove me wrong. I will keep you all updated on my fatigue situation.
I do still get a couple of hours here and there where fatigue stops me from doing anything. But we're talking once a week, and it certainly doesn't reach the level of where I have to go to bed and sleep. I just mong out in front of the telly for a bit and don't move. Hang on, I do a bit of that anyway, so what's the difference?
I managed to get through March having 5 falls. That ain't bad. One of the falls was after I had been put in a situation where I had walked further than my legs would normally allow and they gave up on me. Just as I reached the car too! Two were drunken trips and the remaining two were sober trips. I'm fall free so far in April. Yeah, yeah, it's only the 5th, but, so what? Let me congratulate myself here. I probably shouldn't gloat though, because using the law of averages, I am due one any day now...
Have a fantastic weekend, all
Dan
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