Thursday, 29 November 2012

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.


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:

ride a bike

Will report back. Toodles.


Stitched Together said...

How wonderful for your consultant to recognise how important your hands are to you. Have you seen one of those devices that sits in your lap and provides a support to your hands and wrist by holding the knitting needles. I cannot for the life of me remember the name of it and I can't find it online because I can't remember the name of it. I saw it in a magazine a while ago and I just remembered it when reading your blog post. I think that would really help you knit more easily, if only I could remember the damned name!

Hi, I'm Vicki said...

aww i'm sorry to hear things are rough for you - long term illnesses suck!!! Hope things go well on the 10th, I'll keep my fingers crossed xxx

sulkycat said...

OOhh - one of these?

Had completely forgotten about those - will definitely look into them, thank you!

Ambermoggie, a fragrant soul said...

It will be fabulous for you to be on the trial of the new drug sulky, crossing everything that you will be there on the 10th:)

Annie @ knitsofacto said...

Good luck re. the trial. I don't tolerate meth well either and despite the ME now have high BP so sorting meds is a nightmare. Luckily for me it sounds as if my hands have a long way to go before they're as bad as yours.

Stitched Together said...

I'm glad you found it without my help. I only just tracked it down 2 weeks later!