Week 55

The other week, I mentioned a new drug, potentially for people at a further progressed stage of MS called laquinimod. It is an oral therapy that is made by a company called Active Biotech, who are in partnership with Teva - the company that make Copaxone. 

I'm surprised that the progressive side of MS hasn't already been tapped into by the drug companies. Up until now they've put all their eggs in the 'Relapsing remitting' basket, which from a business sense is wrong. A person with MS will generally spent a lot more of their life in the progressive phase of the illness as opposed to the relapsing remitting one. Therefore, if they can come up with a treatment for primary and secondary progressive MSers, they'll be able to sell their medications to the care trusts for the rest of the patients life, as opposed to the, 5+ years that an MSer will be 'just' relapsing remitting. 

Now that might all sound a bit cynical, but lets be honest, treating MS is BIG business. We are talking a multi-billion pound industry here and all these companies would go bust if they ever did find a cure for MS. 

Take, for example, the company that have the licence to sell Lemtrada. It is called Genzyme and 2011, a French pharmaceutical company called Sanofi bought them for over $20 Billion! That is not a typo. They paid over twenty billion US dollars, or +$20,000,000,000. They won't be looking for a cure anytime soon. 

This is why I believe the Pharmas are only interested in treating MS and certainly not curing it. Our best bet is with all the research into Stem Cells. There's the answer, it's just waiting to be discovered. 

Anyway, that's my conspiracy theory over. I am supposed to be talking about Gilenya, but I have no new news on the current treatment that I am on. The symptom relief I get is stable. Well, bar a few heat related hiccups I've had of late, but in the northern hemisphere, summer is over, so my nagging eye related and neuropathic pain issues have died down too. 

Maybe Teva could trial Copaxone and laquinimod? I'd give it a go. 

Happy Friday, people. 

Dan 

Week 54

Campath 1h, alemtuzumab, Lemtrada - call it whatever you like, has been given approval by the European Commission to be used as a disease modifying treatment within the European Union. Hurrah! This means it can now be presented to the individual European governing bodies for a safety, efficacy and all that assessment. In the UK it's called the National Institute of Health and Clinical Excellence or NICE as the acronym goes(don't ask me where the H went, it's not my acronym, I just use it?). 

Hopefully, it'll get approval pretty quickly as the treatment has far better results than any other drug on the market to date and will make a massive improvement to the lives of many MSers around the globe. 

It is a very aggressive treatment. It kills your immune system, resetting it in the process and then your body will naturally rebuild it, but without its aggressive tendencies that we all know and hate. Obviously, no initial immune system will leave you open to all sorts of viruses and infections, so you have to watch who you socialise with for the first few weeks!

I tried to get my grubby mits on some Campath 4 (or was it 5 or 6) years ago when my hospital signed up for the CARE MS1 and CARE MS2 trials all those years ago. CARE2 was for people that had already tried other treatments and 1 was for those that hadn't yet tried any medication - recently diagnosed. I was on the CARE2 list and just as the trials were about to start, they decided to take part in just the one trial. Yep, you're right, CARE MS1! That's when they offered me Tysabri, which in all honestly was a pretty good 'runners up' prize. 

The Pharmaceutical company that has just been given the license to sell Lemtrada to our primary care trusts (PCTs) is called Genzyme and it is up to them what they charge. Now, they have got research and trials costs to recoup when pricing the treatment, but if they price it too high, our PCTs won't use it. Us mere mortals could be the losers in the potential financial 'Tug of war' battles between 'Big Pharma' in the red corner and Governments/Private Medical Insurance companies in the blue corner. Place your bets...

Seconds out, round one! 

*Ding ding*

Dan

Week 53

Well, I've now started my second year on Gilenya. Lets hope the symptom relief continues for me and the primary care trust will be of the opinion that that is worthwhile for them to continue paying Novartis' extortionate fees for my medication. 

So what's my disease modifying therapy plan for the next 12 months? You're probably asking yourself why am I asking you, but I'm talking to myself really. First sign of madness and all that...

I hope to be kept on Gilenya for as long as possible, but I believe it will be withdrawn at my next Neurology appointment in December. Happy Christmas, Dan!

My neuro is called Professor Giovannoni and he and his team do a research blog that I do regularly read it. It's far more interesting than my feeble effort. 

I recently read one of his entries about a stage 3 drug that's been on trial. The drug in question is called Laquinimod and the best part about it is... wait for it... drum roll... it has been tested on people with  progressive MS! 

Laquinimod is the first drug to show positive results in that helps with disability and brain atrophy (shrinkage). Most disease modifying drugs work by targeting the relapsing and the 

inflammatory side of the illness. It looks like this one is neuroprotective, which in layman's terms means it's aim is preventing progression - something that no other drug has managed to do with me. 

Prof G would like this ORAL therapy to be used alongside other medicines that work against the relapsing remitting side of the illness. This is exciting times for people with ALL types of MS. 

Don't take my word for it, take the scientist's. Link at bottom

Happy Friday,

Dan

http://multiple-sclerosis-research.blogspot.co.uk/2013/09/is-laquinimod-new-wonder-drug-that.html?m=1

Week 52 - A whole bloody year!

I can't believe I've been taken Gilenya for a whole year. Doesn't feel like it. Doesn't time fly when you're having fun!?!

On Wednesday at around 9 o'clock in the morning, I took my 365th tablet of Gilenya *note to self: check calendar to make sure it wasn't a leap year*.

365 tablets at a cost of £42 per pill comes in at a nice fat £15,330 per annum. (Kerching, as they say at Novartis) Wow! So what have the NHS got in return for their investment? In terms of symptom relief, my main benefit is, and continues to be a large reduction in fatigue. I've also noticed improvements with bladder and bowel function. 

What about its affect on the illness itself? No idea. I have been slowly deteriorating for quite a few years now, and this has continued whilst I've been taking Gilenya. That's not saying that the medication isn't helping to fight disease progression. I could be progressing quicker without it.

On the face of it, I think it comes down to the path that MS is on for each individual. Mine is very aggressive. That's why my diagnosis is 'Highly Active Relapsing Remitting MS'. I'm still waiting for these remissions though!

It's been the same on Rebif though. And Tysabri. On the latter, I also found symptom relief despite there being no obvious changes with the progressive nature of the illness. I had no symptom relief at all on Rebif. Everything worsened considerably. My God, that stuff was like poison to my body. 

I hope I'm not putting off anyone who might be contemplating switching to Gilenya from their current medication. I am just telling you how it is with me. No disease modifying therapy has had any real impact on the progression of the disease, and the symptom relief I get is on a par with Tysabri. The difference is that the Gilenya way is a pill, that's it. 

So is symptom relief enough for the NHS to continue paying out up to £1300 a month for?

I don't think so either. 

Have a good 'un,

Dan