Synovial Syntax

Posts Tagged ‘Remission

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? and I’m pleased to report I am 34lbs lighter than at my last post and very much more active and toned 🙂

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Ah, well now, wasn’t expecting that. Bloods a teeny tiny bit elevated recently, Prof taking my niggling aches more seriously than me. He ‘doesn’t like’ that my elbows are beginning to give when weightbearing. No, me neither, but I’m still a bit deflated to have him finding issue…and increasing my sub-cut MTX to 17.5mg.

Other than that, watch and see. It could all just be a reaction to the pressure of the year so far – see previous post re: husband working abroad and me starting a new job. It might be all that is keeping me from remission status, and in slight progression status.

To be honest, I’d rather feel that life was engaging and developing and I was in slight progression, than that I coudn’t work and husband had to prematurely rein in work for me to acheive a period of formal remission. So, I may be trading stress to get interest out of life. It seems a fair trade at these not-wildly-stressed/not-wildly-inflammed levels!

He has said to take more note of aches and pains and joints slips and weaknesses though. Apparently there’s a number of us whose pain thresholds get so high, and pain medication use gets so efficiently targeted, that we don’t get enough messages from what our bodies are trying to tell us after a few years of RA. I hadn’t really thought of that, I can see some truth in it for me. Anyone else?

On Wednesday I also got the green light to get into some proper exercise. My joints have stabilised and shoulder tendon healed. I’ve been advised three things – swim for cardio health, resistance train to strengthen joint support from muscles and try and get on a power plate now and then to improve bone density. I think that was what he said about the power plate anyway.

Am going to go and look up this link with resistance training and RA especially.

Wanted to fit a first swim into a very busy time last week, was about to set off and realised I’d thrown my goggles out in a hissy fit back in the bad old days, probably accompanied by a histrionic ‘I’ll never swim again, *sob*’. Have decided to invest in the fit future and been to SpecSavers to treat myself to prescription goggles this time. Looking forward to this.

In lieu of the swim, or cash for trainer/gym at the moment, I hoiked myself back onto the Wii Fit today. Managed to fit 15 minutes of its aerobic stuff into a daftly complex morning. Was thrilled to find my hips and knees have stopped grating and wobbling out when doing the virtual hula hoop. Really feels like progress, that tiny 15 minutes.

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

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.


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