Week 51

I didn't so much as type the word Gilenya once in last week's blog. I feel like I've let you all down, but don't worry, I've got over it. I shall, however, endeavour to talk about it a bit in this one. But not just yet. 

I've been getting a bit of neuropathic pain recently. Only Intermittently though, not constant. Usually at night - Just as I want to sleep! A horrible stinging and burning sensation, It feels like my feet are on fire. It goes up to my knees and stops dead. It's my legs, it's ALWAYS my legs!

I've been 'lucky' when it comes to MS related pain. It's always been present, but it has been of a minimal significance. Recently it has struck with a vengeance on a couple of occasions. On one, it kept me awake almost all night. I was not happy. 

I currently take Amitriptyline for neuropathic pain. I was on 50mg daily. I should actually say nightly really, because those babies make you sleep like a, erm, a baby, but I cut down to 30mg as I was aware that they were having an imparing (is that such a word, or have I just invented a new verb?) effect on my cognition - you know, when your brain takes that extra second or two to acknowledge something has been said to you, or when you temporarily forget something unforgetful. That's an oxymoron, just for you MSers

I was initially reluctant to increase my neuropathic pain medication because of the potential weight gain as well as the cog-fog issues already mentioned. I did a bit of research on some other neuropathic pain drugs, - Pregabilin, Gabapentin and duloxitine in particular - then I spoke to my MS nurse about my options. 

She told me that all these drugs work in a similar way and the side effects are all pretty much the same. As my body tolerates Amitriptyline well, she's suggested that I stick with what my body knows and increase it as needed. 

Oh (*insert your choice of swear word here*)! I don't want to increase my medication, but I have a plan. Unless this pain becomes a regular occurrence, I think I'm going to stick to the dose that is good 99% of the time, and when the pain starts the other 1%, I'm going  to dose myself up with Tramadol. Obviously, it won't take the pain away, but it might make the pain not bother me and it might help me get off to sleep too. 

I've got a stash of 100 50mg tablets from a time I was given them, but I never used, for a reason that escapes my mind just now. See, the cog fog is bad enough, WHY would I want to increase my meds and make it worse?

I promise to talk about Gilenya next week. Have a good  one,

Dan

Week 50

It says 50 weeks at the top of the page. That's nearly a year - I state the obvious and everything in this blog. Such a 'must read', eh?

Before Gilenya, I was on nataluzimab (Tysabri), and when I had been on it for the same amount of time, I would be half way between my 12th and 13th infusion. That was 12 whole days spent travelling to London, having the hour long intravenous medication and then the second half of the hundred mile round trip back to Southend in Essex. It was pretty much an all day affair. 

The highlight of the day was the 'pit stop' at KFC on the way home. 2 piece variety meal with gravy by the way. Even though my Mum very kindly drove, I found the day exhausting usually and I always slept like a baby that night. 

Now I just take a tablet first thing in the morning. 

Before my stint on Tysabri, I was on Beta interferon (Rebif). As most of you will probably know, this medication is a three times a week injection beneath the surface of the skin. It is self medicated and the needle is less than an inch long, so injecting yourself really isn't a major issue. You do get given one of those awkward and fiddly auto inject gadgets, but to be honest, by the time you've set the thing up, you might as well do it yourself. 

In 50 weeks, I would've done this 150 times! That's a lot of itchy site reactions and a lot of 'flu-like' symptoms that night and the accompanying broken sleep that leaves you feeling like crap the next day. 

The 'experts' do warn you that you might endure this side effect the first few times you inject, maybe the first few weeks, even. What about the first few months, or the first few YEARS, eh, EH? Seriously, I was getting the same nasty side effects after two and a half years, as the ones I got after the very first injection. 

390 times I subcutaneously injected that stuff. Why did I stick with it for so long? Because I believed it was for the best in the long run. 

Now I just take a tablet first thing in the morning. 

Happy Friday,

Dan

Week 49

I moaned about my eyesight the other week as my vision was giving me a bit of jip (trouble). I didn't think it was optic neuritis and the Twitter community largely agreed with me. 

Anyway, my initial beliefs that it was what my MS nurse refers to as a heat related 'Pseudo relapse' seem to be the case. What's a pseudo relapse, you could well be asking? They call it that because this 'glorious' weather we have been 'enjoying' in the southern parts of the British Isles can cause some MSers to believe they are having a relapse because they are enduring a worsening of symptoms brought on by the humidity. 

Getting back on topic, my eyesight has got better since I last moaned about it as the humid and sticky weather has passed. Fortunately, summer doesn't last very long in this country. 

I didn't drive the car for over 2 weeks because I didn't consider myself safe, but I got behind the wheel yesterday. It felt great. I know that my eyes will eventually prevent me from driving, but not just yet. 

I have got an appointment to see an ophthalmologist (eye doctor) coming up. Although I don't believe I need it now, I'll still keep it. It doesn't do any harm to keep an eye on them (Ha! irony) as we all now know that Gilenya can cause a swelling of the macula (a spot in the middle of retina of the eye) leaving your vision in a similar condition of someone with optic neuritis. 

The weather hasn't had an effect on either my bladder or my bowels, so the Gilenya is doing its job with those two symptoms. And  my levels of fatigue are still pretty low *does smiley face* 

Well that's about me done for another week. Not much to say about Gilenya, I'm afraid, but it's continuing to what it has been doing, so I'll take that. 

Roll on Autumn. 

Dan

Week 48

Before I started taking Gilenya, I was on a drug called low dose naltrexone (LDN). It is a drug that isn't available on the NHS, so it has to be paid for by the patient with a private prescription. It isn't an expensive therapy. £20 odd per month, so I found it affordable. 

The reason the NHS didn't adopt LDN as a disease modifying therapy  is because the results from the clinical trials they did came back inconclusive. Some people swore by it, but many said it had no effect. Therefore, if you want to try LDN, you've got to fund it yourself. 

Naltrexone  is an opiate antagonist. That means the drug will stop any opioids in your system from working. It is used predominantly for treating heroin and morphine addicts, but it was tried in much smaller doses on people with MS with some success. 

During my time on LDN, I felt stable. I had no improvements or symptom relief, but I didn't progress in any way. 

Remember I told you about LDN being an opiate antagonist? Well, I'd been on LDN for around 6 months and I did one of my big stacks and broke my arm. It was a bad break and I would later go on to have surgery (1 plate and 7 pins). I was in a lot of pain, so the paramedics gave me some morphine nope, not a thing. They gave me some more. Nah, still in pain. They had to get another medic to give me a third lot as the other one had given me the most they were allowed to. "What do you mean you're still in pain? You should be as high as a kite!" The puzzled medic told me after my third dose of morphine 

I never gave it a thought at the time, but despite being in a small dose, the naltrexone was working against the pain relief. 

I carried on taking the morphine, despite it giving me no pain relief whatsoever for another few days. After a couple of days, the morphine did start to have a minimal effect, but my arm still bloody hurt. I was laying in bed one afternoon when it hit me. I remembered that I had Wifey bring my 'ever growing' medicine bag to the hospital for me, but the LDN has to be chilled, so it's kept separate from my other meds. I'd forgotten all about it. Hang on, that stuff is stopping the pain killers from working! I hadn't had any for nearly a week and the morphine was very slowly starting to have effect. 

I haven't had any since. As soon as I came out of hospital, I was told I would be having Gilenya in the near future, so I never bothered re-starting the LDN. 

I'm contemplating having another go on LDN. Shall I wait till they withdraw Gilenya or shall I get  back on it now? I don't know the answer to that just yet, but before you question why I've made you read all that, it's because I haven't got any updates on Gilenya, it's all ticking away quite nicely. 

Happy Friday,

Dan 

Week 47

Last week I spoke about a few issues I am having at present. I never gave it a thought, but they do have to test your eyesight when you've been on Gilenya for four months - I think it was four months. It was so long ago now, I can't remember? - Anyway, they did the tests and were happy with the results, so they discharged me. 

I doubted that the medication has anything to do with my current eye issues, but I didn't want to take a chance with my eyesight, so I rang up my MS specialised nurse and left a message with them to contact me.  After speaking with my consultant (via my nurse), I am expecting an appointment with an ophthalmologist who will examine my eyes. Lets see where that gets me.  They don't think it's optic neuritis either, so it's probably nothing. 

There has finally been the first case of progressive multifocal encephalopathy (PML) that has been attributed to Gilenya. I think 'finally' is the wrong choice of word, but what I mean is that it was always going to happen. Any treatment that stops the immune system from crossing the blood-brain barrier will have a PML risk. 

There are 71,000 MSers worldwide on Gilenya and to date there has been around...?...cases of PML  (At this point I was hoping to be able to give you a definite figure as I know there are examples of post Tysabri patients who've sinced moved onto Gilenya and subsequently been diagnosed with PML). These have all been attributed to previous disease modifying therapy - namely Tysabri - but the PML case that's hit the news over the last few days has no link to Tysabri whatsoever. It is the first and it certainly won't be the last. 

Tysabri, however, has had 350 odd cases as of April this year, and almost 1 in 4 have died. To be honest, I think they're the lucky ones. No seriously, if PML doesn't kill you, it leaves you heavily disabled. I do apologise if I've caused any offence with that statement, but if I had a choice between those two scenarios, I'd take the easy way out. 

Annnyway, so our chances of getting PML whilst on the oral therapy are greatly reduced. I don't know about you, but I have no intention of stopping this tablet a day therapy. If they take me off it, so be it, but until they do, I'll stick with it. 

Stay strong. 

Dan