Synovial Syntax

Humira, heat and hate

Posted on: June 24, 2009

Had a right old bonfire of the insanities today. A whole day dominated by RA, exhaustion and loathing the filth merchants. Problems started yesterday night with their steely determination to dispose of a shoddy bookcase by first splintering it against the side of the house so frames on our walls shook and then burning it in a miniscule old bbq (must have been watching flameboy on the other side for inspiration :)). While drinking copiously and playing Metallica. For EIGHT HOURS. I ended up with a lovely 2.5 hours sleep, jerked awake by their shouts of joy as they greeted dawn by dousing out the fire (small mercies) and slammed their big back door shut.

I had to speak to them three times. I knew it was pointless but I could not contain myself. I was reasonable, at some personal cost having metaphorically nailed my feet to the ground to stop myself cracking their heads together. We called the noise patrol. Nothing of any substantive use there, bless. These neighbours from hell need to go, so perversely we need them to make more noise! We’ll be sharing the legal costs with our neighbours. It’s good not to be alone. I must really try not to speak to them about noise again, but let them hoist themselves by their own petard.

Was very interested to note, as I went shaking with supressed rage back to bed at 2am, that the adrenaline surge left me completely pain free for a good quarter of an hour. Not looking for that on prescription mind you. Dragged the kids into the day at 5am when baby woke. Dragged myself through the shower, dragged myself off for my consultant appointment.

Consultant maybe also has noisy neighbours? Or he was not enjoying swapping the heat of sunny London for the heat coming off my joints. He was not thrilled with the old graph today. Irritated by Rituximab question, and needed reminding I’m not thick and he could use words of more than one syllable to explain his reasons for sneering at the very idea. To paraphrase him: it’s not all that fantastic, there’s a lot of drug company puff going on, there have been some problematic side effects, we’re hamstrung by NICE guidance, be a dear and shut up and be grateful for our offer of Humira it ‘costs £10,000 pounds a year you know’.

Yes, I do know. So what? I’m worth it. I’ve paid endless NI contributions, worked like a dog for half my market rates for the NHS for 20 years and have watched billions go down the pan on Connecting for Health, the IT programme for an information spine for the NHS.

That’s my negative/horror-tired version of my precious 12 minute consult. More positively, I’ve learnt that Humira would be a great first choice for me as I have concurrent gut inflammation – not Coeliac but maybe Crohn’s, IBS or Sjorgen’s syndrome. I can stop taking the Sulfa, magic, don’t like it. I don’t tend to depression but I had to work hard to keep mood close to stable on that stuff. The methotrexate is reduced to just 12.5mg, which means my hairline will grow fully back and I’ll feel much less sick for much less time.

Also very positively: I was fitted in to see the biologicals specialist nurse and had my first assessment. I can identify the parts that her counting tender and swollen joints, and my CRP was noted. I’m sure there was no VAS (visual analogue scale) type discussion at all. Maybe next time? My DAS would be 6.4, if I insert a wooly ‘I feel about 66% rubbish and stopped from activity’ into one of the onlkine DAS calculators. I go back in four weeks for the second assessment. I plan to have a steroid depo then, as I’m sure I’ll be flared and tired to the nth degree after these medication reductions. We have our first holiday in 2 years starting the week after that, heaven knows I and my poor loved ones deserve a bit of a break. They do offer four depos a year at this hospital, but I’m a bit leery about steroids as we’ve been discussing on the NRAS forums. I had one last September before I was able to start on methotrexate. The nurse specialist says that having a steroid dampener may help the Humira work more speedily. Anyone heard of evidence for this, or is it clinical lore?

And finally, as I was trudging from consult room to room, via the research bloods nurse, I was reminded in no uncertain terms to count my blessings. The research nurse has a kid born the day before my youngest, and she was nearly in tears of worry about leaving her in nursery once her family stopped looking after her. I may frequently feel like corpsing under the physical and emotional stresses of mothering with unstable RA, but at least I’m with my boys. I’m off to bed to hopefully sleep enough to take us to play in the woods tomorrow.

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3 Responses to "Humira, heat and hate"

Yes, they are going and very soon too! It is a great relief, and they are already much quieter. I’m having a random and joyful remission period. Wow! Off out at it again. Looking forward to your post Kelly.

We are already terrified that we will be in your same boat soon with the “nice” restrictions… I have been working on a post about it and if I get it done, I will link to this.

I took Humira first for 2 1/2 years. It is a good thing.

Aren’t the neighbors moving soon? :O

There was an interesting post on cortisone on my fb warrior fans page. It is a good last resort. Only you can judge where you are on that.

Have a nice vacation. 😀

Oh dear … you have my sympathies on the neighbours from hell and the consultant from … well, the NHS, need I say more? ;o) I suspected you’d get some sort of reaction on those lines from the consultant, but glad to hear you were right back at ‘im, and glad to hear that you’ve got a great option in Humira. Good luck with it!!

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