Monday, 7 January 2013

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.


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