A month? No way! Part the first.

Absolutely cannot believe a month has gone by and tomorrow is RoActemra day again.

I did say I would write more about it - so you have been warned, skip past if you are not interested. I couldn't find much information before my first session, so maybe this will help someone out there as the drug becomes more availabubble.

This is a trial, although the drug is also available on the NHS (the little ward I am on each month is next door to the ward where other patients have infusions for RA). Plenty of information here:

RoActemra / tocilizumab

In laymans terms, it works in a different way to older biologics by blocking a different cause of inflammation (IL-6). Biologics such as Enbrel are anti-TNFs - they all block the effects of inflammation but in different ways, and different types of inflammation.

Confused? Rheumatoid Arthritis is a complex disease and affects people in different ways. To complicate it further, it's pretty much impossible to predict what each day will bring - one of the most frustrating things is not knowing which parts of my body will work day to day, whether anything will flare up, or whether the utter exhaustion will kick in. It makes planning even the most basic things such as having a bath or washing my hair ridiculous and I know I tend to let friends down regarding meeting up etc. Bugger.

To be given biologics on the NHS, you have to have tried and 'failed' - ie not able to tolerate - at least two DMARDs (disease modifying drugs such as Methotrexate and Sulphasalazine), have active inflammation and swelling, and a high  DAS - disease activity score (measured by joint counts - not the reefer types - blood tests, pain and swelling).

To date, I have tried:

1. methotrexate tablets
2. methotrexate injections
3. steroid injections
4. plaquenil
5. leflunomide
6. sulphasalazine
7. methotrexate injections again
8. methotrexate tablets again
9. steroid injections into both wrists

over the last year and a bit. As EVERYTHING on that list has side effects (as have the pain killers and anti-inflammatories I am on), it has been a bit of a battle for this poor little body. As so little food stays inside me (and often I just cannot eat anything other than dry toast), by rights I should be skinny! Hey ho.

I was absolutely delighted when the Prof, Mr TopMan Consultant, said I would be 'perfect' for this new trial. Hurrah! Cue several hours of hospital tests, scans, x-rays, blood tests, etc etc etc and several weeks worrying about  the results. I never thought I would see the day that I actively WANTED to have needles stuck into me. And here I am, with my second infusion tomorrow morning, and already feeling like an old hand at this malarky.

I think that's enough medical waffle for one post, so will describe the actual monthly session next time ( i won't tempt fate by saying 'tomorrow' as it knocked me for six last time).

My appointment has been changed from 1pm to - gulp - 8am. Yuk. Mum will get there as soon as she can, bless her. She gets the train through for as many of my hospital appointments as possible, and was lovely company last time. Bonkers, utterly bonkers, but lovely.

Knitting has happened.
Tidying is ongoing.
Sewing might happen one day.
Photos might just be taken.

Toodles.

Chavless in Seattle. With drugs.

Okies, will try and condense Tuesday's hospital visit into something less than a millionty words - and this post will mostly be health based so do feel free not to bother reading if not interested.

There is a relatively new drug available for the treatment of Rheumatoid Arthritis, RoActemra / tocilizumab. It is one of the biologics, and pretty difficult to get on the NHS - not impossible by any means, but as you have to have tried and 'failed' with at least two other DMARDs (disease modifying drugs, such as methotrexate and leflunomide) it is a long and painful process.

roactemra

A few months ago the fab Prof said I would be 'perfect' for a new trial being run, researching whether patients need to take BOTH Methotrexate and RoActemra for it to be effective, or the RoActemra on its own. As the meths causes godawful nausea it would obviously be a huge bonus for many people if this is proved to be the case.

So this is a double - blind trial. All patients will be given RoActemra, via a drip infusion, once monthly. All will also start with Methotrexate too (minimum of 10mg weekly). Half will continue with this combination while the other half will gradually have the meths tapered and then stopped. Double blind because neither the RA nurse or the patient will know which group they are in.

So for those (like me) who don't get along with the meths, there is - as the consultant told me - a good 50/50 chance of coming off the stuff altogether. Good enough for me! There have been significant improvements in people taking the newer drug, with minimal side effects - although obviously this being a relatively new drug there may be side effects to come that nobody really understands yet. It's a chance I am happy to take if it will give me some quality of life back, especially with my hands.

I do take a certain morbid delight in side effects that state 'death' at the top of the list!

Sooooo...... Tuesday afternoon was dedicated to a long screening session, a full MOT health check, with mountains of paperwork and tick sheets, many hoops to jump through etc.
X-rays, many blood tests, pregnancy test (I am not. I replied 'it would have been the bloody immaculate conception if I was!'), ECG, joint count (inflammation / pain), height (stumpy), weight (fat), blood pressue (high), pulse ('racing'), temperature, on and on it went.

They test for hepatitis and TB in particular, either of which would rule me out of the trial. Then again if I had either of those I would rather know about it!!

Fabulous staff, every one of them. All male, all mustachioed for Movember.

It has left me utterly wiped out which I knew would happen (thank you ME), in fact I am too tired to sleep, if that makes sense? BUT, one single line from the consultant which was then passed on to the two nurses, gave me an immense emotional lift:

'Let's see if we can start mending your poor hands.'

Anyone reading this who knits, sews, draws, writes - anything, will understand what this means to me. My poor swollen, painful and stiff hands look like chuffin sausages most of the time, I cannot wear rings anymore (I loved my silver rings), don't bother with bracelets or a watch now as my wrists are so bad. I am lucky that I can and do knit etc, but NOWHERE near as much as I would like. I never knit a top down seamless cardi or jumper because my hands / wrists cannot bear the weight. I switch to crochet sometimes when knitting needles are too much to handle.

Sewing, especially by hand, has taken a huge back step.
Drawing - doesn't happen.
Paining - ditto.
Beading - pretty much the same.

Trivial things to many I am sure, but when your way of relaxing is to make things, to craft, it is massive.

Hearing someone who has never met me before say those words was so important.

I now have to wait until the test results all come back, and the nurse will ring me. He said 'pencil in the 10th'.

I won't actually believe it and relax about it, until that needle is safely in my arm.
Never thought I would actively look forward to that!

Thanks for sticking with this - I think the main thing is that people are working on ways to help those with RA. It is a horrible, horrible life changing disease. I knew absolutely naff all about it when I was diagnosed, and was totally flippant about it. It was the reactions from other people that made me think, hang on, this might actually be serious stuff.

Talking about this to my Aunt the other day, I said there are three things I would LOVE to be able to do again:

swim
draw
ride a bike

Will report back. Toodles.

Poor puddytat

Not good at the moment, has been a tough week (fainting, sickness, dashing to the loo) . The hospital have told me to stop the Leflunomide for at least a week to see if I pick up a bit, then try it again once on alternate days.
It's either the tablets or some sort of bug (and of course I have a compromised immune system now) - whatever it is I wish it would bugger off. ME too, nice mix.

So not much else to report - was supposed to be having an Out tomorrow with really lovely friends but that's highly unlikely (especially with the risk this is a bug).

All I want to do is lie in bed and try to sleep, I managed to get to the shop today but had a funny turn and had to grab a bottle of Lucozade from the shelf and swig it, no way did I want to end up on the floor of the local Co-op, would have a million more germs than I started with!

My worry about the tablets is that there is apparently just Gold injections to go if the Leflunomide is making me ill and I really do not want those. Amazing how much your life can change isn't it, I never for one minute thought things would be this rough when I was happily teaching those lovely bonkers kids in the PRU. But sweet FA anyone can do about it so not much point in complaining.

Right, bedtime I think.
Toodles x