Synovial Syntax

Posts Tagged ‘anti-TNFs

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:)

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.

These immortal words greeted my first ever depot jab, last September, of steroids. Oh they were a relief. However, I’m scared of them as a drug class, proper scared, since i nursed a fair number of scary, leary ‘roid ragers when I worked in psychiatry. Yes I know these are different to the bodybuilder ones, but we all have our foibles and fears and these drugs are mine. I’m planning to have/risk another tomorrow, when I also have my second anti-TNF assessment. Murphy’s Law being what it is, I am turning up with my best possible presentation in terms of not so much pain and swelling. The last month has had many mini-remission type pleasures. Well, we’ll see how I go. Last months DAS score was 6.60, even with nice low ESR and CRP results. Despite copeing OK-ish at the moment, I do long to try Humira. I would love a time of better health, whatever time I could have.

I also continue to cheer up immensely after stopping taking that depressing Sulphasalazine, and while a fair bit of the pain is back this week, the fatigue is not as bad as earlier this year. Mind you, today is shattering, but that’s down to a 3 hour kiddies party in high humidity.

I spoke to a few other mums randomly clustered around Hampstead Heath yesterday. As it’s the start of the 6 week school holidays, there was a fair amount of wailing and gnashing of teeth about this impossible length of time spent en famille. I think it’s just fashionable in NW3 to whinge about it, they did actually seem a bit pleased about some of their plans with their kids. I mentioned I am having a whopping steroid depot in my expansive derriere on the first true day of our holiday and that I was really looking forward to it as it meant I would be able to cope with the energy levels required. After an arctic silence, I was group-informed that daily gin and tonic at 5pm was just as good a way forward. I must remember how left-field much of this business of having RA is to many people, and save the gory details from strangers. 🙂

So I drifted off in a haze of alternate reality, where auto-immune diseases could be suppressed by a nice Chardonnay with possible a Scotch chaser on particularly bad days. Wouldn’t that be luvverly?

C day is consultation day. Tomorrow’s is also ‘cap in hand’ day. At the last consult he mentioned anti-TNFs as next stage, as I’ve not been responding well to methotrexate and sulphasalzine. I’m particularly hoping to be shot of the sulfa, which is no good for my mood. I’m going to ask if we can skip the anti-TNF and go straight to Rituximab, as it’s clearly shaping up to be more effective, and cheaper than anti-TNFs. Don’t expect a yes, as it’s not approved in my care stage yet by NICE. But if I don’t ask, I don’t get.

Have been having a lot of pain and immobility in many joints, but am not going to ask for a steroid jab. I’d rather save that for the onset of winter, when I expect things to be really sore, if last winter is anything to go by. Must look into that, the effect of weather.


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