Synovial Syntax

Posts Tagged ‘Humira

Just had my 6 monthly Professor visit. 17.5mg MTX + Humira have me as well as can be hoped, hurray. Got my non-swollen knuckles rapped for falling off of nurse’s radar and missing 2 monthly checks. Ah, the joy of feeling well enough to, heh?ย and I’m pleased to report I am 34lbs lighter than at my last post and very much more active and toned ๐Ÿ™‚

I’m just out of consult, and it’s as good as it gets. It’s a sort of remission, or a serious damping down at any rate.

I have to live with the monthly peaks, plan around them and get exercising again preferably without injuring myself this time. Lesson learnt, just because it feels good at the time, I can’t really thrash things in the pool like I used to! Plus I must stop trying to play so hard with my ever growing young boys. The main impact of injuries in my case seems to be, apart from extra joint damage, that I then have to take steroids which melt my immune system, increasing infections rate and severity and meaning I have to delay the MTX and Humira. Which in turn cycles me into non-healing joints etc.

I live and learn.

Bloods are all behaving nicely. It was also reassuring to hear about new research which shows anti-TNFs reduce cholesterol which been raised a bit by MTX.

I had a good whinge about my GPs daft notion that I go in 24 times a year to present blood results, despite only have my bloods done 6 times a year (which needs 12 visits only). Hopefully I’ve imploded that situation anyway by arranging with pharmacy to run my repeat MTX situation. They seem infinitely more efficient and less panicky than the GP reception staff.

That’s it really. I know this situation is as good as it gets, as my next appointments are in the agreeably hazy future, and not next month.

Huuray:)

No, I’ve not lost so much weight my funbags are deflating. As very if. Though I have lost some weight, preen preen. It is the thought of the surgeries likely to come in years to come that is making me peg away at it, trying to get a pound or two off every month.

Sidetracked at outset, not good is it? What I came on to say is that I’ve done another snapshot of The Graph That Doctors Love (TM) prior to my next consult with rheumatology in a few days time. Sure puts perspective on what I felt was a painful and problematic late winter/early spring. Not as bad as it has been so far. Think it was the general unwellness wearing me down most in retrospect. So, things settling down OK I think when I can actually take my Humira regularly. And small peaks every month due to hormonal shifts. Well they look small on paper but I feel ruddy rudderless and sore on those few days every month.

For the record, I am so glad that the shoulder pain from a stupid injury that I had Feb-April is gone that I am currently raising a beer to the vagueness of my memory of it. The pain that is, not the beer. Looking forward to finding out more about my bloods recently. Wonder how close I am to whatever is the current working definition of remission. Will report back next weekend I expect.

RA prescribing by joints inflammed, pain reporting and drugs going in

Warp speed 6, Captain

Been AWOL, not entirely sure why. Combination of boredom with RA, resurgence of activity after the boredom and switch of browser where I didn’t tab this site as a daily look-at. Mistake! Out of sight, out of mind.

Anyway, a brief update:

  • End of winter was hard. Many bugs from older boy’s new school, round after round of infection in cold, damp weather. Got to the stage where I was only able to take Humira about once a month, so of course, I flared.
  • Once that was under control we experimented with reducing dose of methotrexate, mistake, flared again. Methotrexate back up again, Humira taken every 2 weeks, happy result: I’m very comfortable and very well feeling. Just very mild joint warmth and slowness in the morning.
  • Oh and during the whole flare-y winter period I also injured my shoulder quite bady. Swung the younger child up onto my hip and just felt my shoulder give. Fissured but luckily not torn tendons, then bursitis with synovitis. Got about 60% of that pain under control with a local steroid shot, but it was a subsequent systemic steroid that really healed me. I did not enjoy living on tramadol etc for a couple of months, but needs must…I stopped the addictive drugs with a couple of days mild headache only. Lovely to have a fresh head again.
  • Am being very conservative about activity still, though oh! I would love to swim or something.
    Especially as I’m losing weight after a good period off steroids and healthy eating.
  • Workwise: I did some simple consulting, failed to get a job in my old field that was part-time on grounds of being over-qualified and am currently doing some data analysis in a different field which is very refreshing and reviving. Not much, a sporadic 10-20 hours a week only.
  • More sooner, I seem to have found my discipline mojo recently.

    I’m not a huge amount springier than yesterday. But what a numpty I’ve been. I forgot to take my Humira dose yesterday! Already so acclimatised to it that I forgot it, where previously I’ve been kind of obsessing about when next one is due. Hopefully everything will ease a little, and help me get that equanimity back. Dose due dates put back into my Calendar. Doh.

    Tags:

    Haven’t had one of these for a while! Except the slight upswell of discomfort days 11-14 as Humira wears off. This one occured days 6-10. Very clearly started with extra tiredness, and hunger, then moved onto increased shoulder and hip pain on the right side. These ones almost always hurt by the end of the day anyway, they take serious childcare punishment! But my hands went up as well days 8-10, with some stiffness and gelling on rest.

    Possibly the recent reduction in Methotrexate, possibly a change in diet, more of which in soon-to-come post. Anyway, there it is for the record. Glad it seems to be over today, and energy especially back to normal. I get bored grim by the effort of mentally flogging myself through the day.

    What a good girl

    Fab journey in, snow out of London = no traffic in London. Clinic late to get going, but was well armed with papers, mags and coffee, so was just revelling in child free morning.

    Saw the Prof, and I got a gold star for being such a good Humira responder. Rock solid good blood work. No joint swelling. See you in three months time. He won’t countenance going to every 12 days on its frequency just yet. Need more evidence over time. Has reduced my MTX now right down to 10mg, see if I can come off it. Hope I can, would love to live without the weekly day of nausea. Some concern over sore throat and persistent cough, but not much, as I am clearly so well otherwise and exposed to so much junk via kiddies. Just keep an eye on it. Though would have been sent for Xray to be on safe side, if the unit was working normally. Was emergency films only due to staff shortages in the snow. Probably will have to go to GP next week if no better, but all this gets easier soon, as older boy starts school today!

    Nothing else to report on the NHS front. Except that I got advised by a TV screen in the waiting room to ‘enjoy sex responsibly’. Which made me want to spit my coffee. Because a) it’s 0810 and b) it’s not your business and c) I’ll enjoy it or nay as I please and d) it’s not alcohol, just don’t be daft.

    Were fine! Am quite defo settled on this drug for now I think. Have a consult tomorrow, have a persistent cough to worrit him about and that’s about all. I wonder if I am close to his definition of remission? Feel pretty good and overwhelmingly thankful.

    I will however ask if any chance of getting Humira slightly more frequently. I finally charted all the data form my last visit and I can certainly see the wee spikes of pain on days 12-14 of my current 2 week cycle. I don’t mind them, but I worry a bit about performance with any work on those days, I really struggle through them in terms of energy.

    Ooh, quick let me toddle off and see if I can post a pic of today’s chart. Speaks a 1,000 words ๐Ÿ™‚

    Belated season’s greetings and a very hopeful and happy New Year to you dear reader.


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