I wish I could live in the dream world my consultant inhabits

December 27, 2009 at 11:03 pm | Posted in rheumatoid arthritis (RA) | 1 Comment
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It’s official – I had a flare at the end of October/early November … and more, I suspect. No kidding. I think I knew that, but this time it actually showed in the bloods! That’s a first for me!! I’ll give the consultant his due though – he was as amazed as I was that the bloods actually matched with how I’d felt, so he does at least appreciate that one can feel totally lousy and have no indication in the blood tests whatsoever, and vice versa.

Anyway, we agreed that things were going pretty well at the moment and that it didn’t seem sensible to go on increasing the MTX willy-nilly if things were OK. I explained that I knew I was much, much better than last time I’d seen him (which I think was well over a year ago, as I’ve since seen a registrar and a nurse but not the man himself), but that they certainly weren’t perfect, and for the first time he admitted that I probably wasn’t going to achieve perfect … I’d kinda figured that out, but still a slight blow to hear him say it!

He then cheerily added that never mind, compared to what he usually saw I really wasn’t bad at all. He has no idea just how bloody irritating this comment is – he’s said it before. I think last time I was too dazed and generally fed up to actually respond, but this time I was properly prepared and I pointed out that I wasn’t comparing myself with his other patients – I was comparing myself to myself before this whole R.A. business started, and that when I do that I don’t see my current self in a terribly favourable light. The nurse who sits in with him (as a chaperon and to make sure he remembers to fill all his forms in!) was nodding sympathetically and understandingly behind his back. I got the feeling she’d heard this comment from him before and had thought exactly what I was now saying. Anyway, he sort of blinked a bit, looked rather surprised at being answered back to and mumbled something that was vaguely conciliatory … I think.

Then he bid me to enter his dream world by saying, “If the MTX doesn’t keep things under control, if you have another flare, we’ll put you on these terribly expensive new drugs called biologics or anti-TNFs.” (He does tend to forget I have a brain.)

I snorted – very rude, but it just sort of happened! I said something like, “Have to be one hell of a flare for the NHS to let me on to those!”

“Oh no,” says he, “just an ordinary sort of flare.”

Well, that’s certainly not the impression I’ve been given by the NRAS magazine, the people on the NRAS forum (other R.A. sufferers, generally in a much worse state than me, who have failed the ‘DAS test’ for anti-TNFs), the press, people I met in Barcelona, the nurse practitioner, the GP, the practice nurse … just about everyone else really. Since this is the man that told me I should see him in three months last time, when it was totally impossible for anyone to get an appointment closer than six months, and the man who told me that all I needed to do if I had a flare was phone and I’d get straight through to someone on the helpline (not true as it’s usually unmanned and then they don’t call you back) I don’t feel too filled with faith about the biologics comment either! I dare say though that his “ordinary sort of flare” would be the ordinary sort of flare that his other patients have, not my little fizzle!

Well, hopefully the MTX will now do its job properly and I won’t need to ever find out whether he’s living in a dream world or I’m just being unnecessarily pessimistic about my prospects for biologics!

The Joys of Medication – copycat post!

June 22, 2009 at 8:48 pm | Posted in rheumatoid arthritis (RA) | 1 Comment
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This post on the ‘Rheumatoid Arthritis and Me’ blog just about says everything I’ve been trying to say regarding my feelings about medication! So instead of saying it, I’ll just post a link. Here it is. Enjoy!

A real breakthrough in RA treatment? Maybe!

June 19, 2009 at 5:28 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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Could the news that rituximab (MabThera) can provide dramatically improved results in patients with early rheumatoid arthritis be a real breakthrough at last? The thing I find most encouraging about the research, carried out by Prof. Paul-Peter Tak from the University of Amsterdam, is that it’s research based on a drug that’s already out there in the market, not something we’ll have to wait ten years for approval for.

Tak (which means thank-you in Norwegian, something many of us might want to say to him if this research is taken through into treatment) showed that treating patients early with rituximab and methotrexate in combination,  can virtually stop the disease in its tracks. The 755 patient trial of recently diagnosed patients, most of whom had suffered the disease for less than a year, showed that nearly 2.5 times as many patients on the treatment went in to remission, compared with those treated with methotrexate alone.

Of course, like all RA treatments (to date, anyway) it doesn’t work for everyone, and so far the investigation has only been on recently diagnosed patients, but it certainly sounds encouraging. At the moment in the UK rituximab is only prescribed after failure of anti-TNF therapy, but NICE might actually take this option seriously as the cost of rituximab is about a quarter of an anti-TNF so it makes economic as well as medical sense to try rituximab first.

Here’s hoping NICE do something sensible for once!

Relaxing/de-stresesing

February 28, 2009 at 11:54 pm | Posted in rheumatoid arthritis (RA) | 1 Comment
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Well, it’s been a hell of a week, but thank goodness after a three week break (due to my own stupidity in missing an appointment followed by half-term), I’m having physio again, which improved the end of the week no end. On top of milk RA stuff, the week before last I had a migraine every day – I have stuff I can take that actually works, but you can only take one tablet every 24 hours and it tended to recur about every 18-20 hours, so not perfect. I’ve been working like a dawg and sleeping badly too.

Mysteriously, although the doc reckons my migraines have nothing to do with neck trouble, after the physio they melted away … just like they did when I started physio last time … seems like more than a coincidence to me!

But today I just RELAXED. Apart from a brief trip out with my mum (and she drove … I even fell asleep in the car on the way home!) I did nothing but I lie about in various different places, read books, stroke the cats, watch telly … and a teency bit of embroidery.

Of course I feel guilty as hell!! No one’s making me feel guilty – hubby’s telling me how sensible I’m being, even … but I’m no good at this not doing anything lark, although I reckon now and then it’s probably very good for me.

Off to bed to curl up with hubby, a cuddly penguin called Rory (don’t ask, just don’t ask) and my life-saving iPod. (Poor ol’ cats have been banned to the downstairs rooms, although Enormous Cat might plop through the bedroom window later on and wake me up, as he has a habit of doing.)

Alternative Medicine – v – Conventional Medicine

February 3, 2009 at 11:28 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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A lot of alternative medicine is good. It’s ‘alternative’ because it’s not been proven scientifically in double-blind trials, but that doesn’t mean it doesn’t work. It might just mean that no one has enough interest in funding the trials or, more to the point, sees enough profit in doing so. Full scientific investigation complete with clinical trials is an extremely expensive business.

However, a lot of conventional medicine is also good, and that’s something that a lot of alternative medicine aficionados tend to forget … and in fairness vice versa is certainly also true.

The biggest pity, to my mind, is the divide that says the one has to be ‘versus’ the other. Most consultants dismiss any alternative therapies out of hand, and most alternative therapists, in my experience, are pretty keen to dismiss conventional medicine. There are moves to get the two working together, but it’s going to be a long hard slog to get the two practices talking to each other, an then keep them at it, I think.

Something to remember with regard to RA though is that forty or so years ago conventional medicine had no effective treatment. The recommended course of treatment was bed rest, which did precisely nothing to help. Even twenty or thirty years ago, you’d be put on high doses of aspirin and not a lot else. As a rule the patient went from bad to worse, as RA is generally, if left uncontrolled, a progressive disease. In the short time from then to now there are many more or less effective treatments on the market, a large number of RA sufferers have their disease halted in its tracks, and some are even in remission. The medicines might not work for ever, but, for many people, they do work. They might also cause nasty side effects, but it’s important to remember that they might NOT. Reading the list of side effects on a packet of tablets is pretty scary – what it tends not to say is, ‘Only one percent of people get this one’ or ‘only ten percent of people get that one’ and a lot of people assume that if they try the medication they’ll get ‘em all.

Now anti-TNFs have come on to the market too, and the possibilities of treatment, if the costs can be brought under control, look relatively rosy. So, while I’m all for living a healthier lifestyle (if not very good at it myself, she says munching on another chocolate), and it might well have huge benefits for your RA (or rather huge benefits for getting rid of your RA), don’t disregard conventional medicine out of hand!

And finally, conventional medicine doesn’t claim to understand RA fully, know everything about it, or know how to cure it: I think anyone who does make those claims is highly suspect.

(And if you think this is controversial, just wait for the post I haven’t written yet about drug companies and how they’re actually not all a hundred percent evil)

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