I hope the RA isn’t creaping back

November 6, 2009 at 2:02 pm | Posted in rheumatoid arthritis (RA) | 4 Comments
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I’ve had several virtually pain and stiffness free weeks now – fantastic! But for the last few days I’ve woken up just sliiiiiiightly stiff, and had little bits and pieces of rheumatoid arthritis pain in the evenings and at night … certainly not a flare, not even a fizzle, but just a bit worrying.

I have my six-monthly hospital appiontment at the end of next month and I was joking with my physio the other day that everything would probably jog along very nicely, with just the odd twinge and few minutes of stiffness, until the day after my hospital appointment,when I’d get a flare.

I hope it was a joke … especially as my hospital appointment is 23 December!

Some good news!

October 19, 2009 at 10:10 am | Posted in rheumatoid arthritis (RA) | 5 Comments
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The hot flushes are back with a vengeance! As anyone who’s ever had them, or has a partner who’s ever had them, will know,that is NOT the good news.

The good news is that although I’m quite convinced from previous fluctuations between hot flushes and no hot flushes, RA pain and no RA pain, that the two are correlated – for me, hot flushes usually means more RA pain and stiffness – this time the RA symptoms remain mild to non-existent. Further indication that the MTX is doing what it’s supposed to be doing.

Even the fatigue has reduced – I’ve had a really busy week – busy at work, making some bits and bobs for a charity stall run by our local sewing group, preparing for my mum’s 70th birthday (the house is full of cake, icing stuff, presents, wrapping etc.) – I had a ‘ladies who lunch’ and shopping trip on Saturday involving 50 minute drive each way to Bury St. Edmunds, and I managed the WHOLE weekend without a day-time nap.

I very nearly succumbed, but just managed not too. I hoped that would guarantee a good night’s sleep last night, but thanks to the hot flushes/night sweats, it didn’t. Oh well … can’t have everything. At least the RA is behaving itself!

More evidence that Abatacept IS effective in treating R.A.

October 7, 2009 at 3:15 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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Current NICE guidelines say that Abatacept (one of the many biologics, anti-TNFs) should not be used in R.A. patients who have not responded to other biologics. Now a Cochrane Review (a review designed to help policy makers and healthcare workers make decisions on what is and isn’t effective) says that Abatacept IS effective in R.A. treatment. NICE are already in the process of reviewing their current guidance, but a decision is not expected until June 2010. The review strongly recommends that for the moment Abatacept is not used WITH other biologics – but says nothing about use if other biologics have been tried and have failed, which suggests that perhaps NICE should be recommending it for those with rheumatoid arthritis who have failed on other anti-TNFs.

Like all anti-TNFs, how safe it is in the long term has not yet been established – because none of them have been around long enough, but the Cochrane review (by Dr. Lisa Maxwell in Ottawa) showed that patients given Abatacept were twice as likely to achieve a 50% improvement in symptoms such as pain and the number of tender and swollen joints.

In the meantime a study on intranasal administration of recombinant Human Cartilage glycoprotein-39 for treatment of R.A. has failed. Personally I don’t fancy a regular treatment via my nostrils … although if I had moderate to severe R.A. I guess I’d try anything once! However it didn’t show any improvement over placebo, so I dare say I will never need to try that one. Phew.

Reason to be cheerful – revisited

August 13, 2009 at 8:41 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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I was just revisiting my first ever post, about reasons to be cheerful, and I was pleased to see that most of them still stand (the last one doesn’t and one other … if you read it, and if you’ve read some of my other posts, I’m sure you won’t have trouble guessing which one no longer stands! But the point is there’s obviously a lot to still be cheerful about!

While I was at it I thought I’d revisit the nearest post last year to today’s date, and guess what? The car broke down then too! Now that time it cost me an absolute fortune, so another reason to be cheerful is that it’s really not so bad this time. (Although to be honest the car really has got to the point where I should be thinking about replacing her.)

And a final reason to be cheerful is that I’m SO much better, health-wise, than I was this time last year! I was having a terrible time with the RA then – giant puffball knees, every joint aching (or at least it seemed that way) and probably as yet undiagnosed fibromyalgia on top of that! This year it seems that maybe they’ve finally got the medication dosage right (for now anyway) and I’m really doing very well indeed. If that’s not a reason to be cheerful then I don’t know what is! Here’s hoping it lasts – and wishing all my virtual and actual RA friends a similar and long-lasting outcome!

Now if only we could hear a bit more about that ‘one injection cure for RA’ that was being so hyped this time last year …

I’m bloody glad I’m not flaring!

August 13, 2009 at 2:25 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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I can now claim to know the car park at the hospital where I have physio quite intimately. I know how many spaces there are, I know what sort of trees surround it, I know the view across the fence over the corn field, I know there are blue tits and great tits and some sort of finch foraging in the trees, I know that the oak tree has a few early common spangle galls on it.

No, I wasn’t doing some sort of strange nature survey of the hospital car park – I was waiting for the RAC! Yes, the car has broken down AGAIN! Having lost my marbles and my rag, I have now also lost my car! (Well, hopefully not permanently, but it’s in the garage.)

My wonderful hubby drove out to see if he could help and,although he couldn’t, he waited another hour with me until the RAC arrived. It was a 2.5 hour wait in total – not fun.

Fortunately the RAC guy (who was nowhere near as lovely as the adverts would like you to believe, but OK) got the car going – but I had to take it into the garage because it was still showing faults.

I was patting myself on the back last night thinking how well I was coping with all this … but when I got home it all finally hit me. I felt absolutely exhausted, headachy, aching all over, sore hands, sore feet … hmm, so looks like a fibromyalgia AND RA flare, I thought. Lovely …

But no – I made myself get an early night, convinced myself that the car would probably be OK,managed not to worry too much and … well, I’d like to say I feel a million dollars today but that would be rather overstating things, but AS YET I am flare free. Yippee!

I can’t promise that’ll still be the case if there’s real car disasters on the horizon, but I’m OK for now!

Could be that having just had physio helped too!

Another bad swine flu joke?

July 25, 2009 at 7:46 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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One benefit of suffering from RA is that you don’t really notice the aches and pains when you go down with swine flu!

This time ‘the yolk’s on me’ though, because I’m just getting over a bout of (presumed) swine flu as I type. I’m one of the awful people that had the flu and went to the surgery … but then again I think that’s where I picked it up in the first place!

When I went for my blood test last week the nurse said, ‘Hey, aren’t you impressed? I’m running on time!’ I said no, actually, I’d just settled down with a rather good magazine and was enjoying the break! She said she’d been trying to do me a favour because, as a ‘valued customer’ she didn’t want me sitting out in the waiting room too long or I’d catch swine flu! We both had a chuckle, but looks like she wasn’t kidding as by Wednesday I felt really ropey with a dicky tummy, and suddenly on Thursday afternoon I felt violently sick and had to come home. To cut a long story short, I phoned the surgery Friday morning and said I’d had a dodgy tummy for about a week and thought it might be my medication. Saw the doc (after fighting my way through the receptionists’ blockade), and she said ‘Lots of people with swine flu only have symptoms of diarrhea and vomiting, as well as the fever; might be that.’

‘Oh no,’ says I, confidently, ‘I haven’t got a fever … interesting though, I thought you had to have flu symptoms.’

‘I’ll take your temperature anyway,’ says she, and sure enough I DID have a fever, though only a little one.

I went home, felt gradually worse, went to bed, felt MUCH worse, and ended up, after a period of violent shivers that felt more like convulsions, with a temperature of well over 101.

Still feeling like death warmed up today but temperature almost back to normal – good job I’m a fast typist or I wouldn’t have made it through this post! I’m off to bed now.

Funnily enough I’d booked Friday off as holiday so had tied up all the loose ends at work … however, think I’ll have to have Monday off too. Hubby nearly fainted when he said that and I agreed! That told him how ill I was feeling!

Fibromyalgia AND RA … but there’s light at the end of the tunnel

June 28, 2009 at 10:00 am | Posted in rheumatoid arthritis (RA) | 3 Comments
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Well, I had my consultant appointment on Wednesday – saw one of the registrars who was really nice, listened, sympathetic, examined properly, no sarcastic comments or comments about how lucky I was to have RA mildly. (I figure no one’s lucky to have RA – full stop!)

She did drop a bit of a bomb-shell though, or so I felt at the time – that my symptoms indicated fibromyalgia as well as RA. Fibromyalgia symptoms are aches and pains in the muscles around some joints, serious fatigue and a feeling of general unwellness … sounds quite simliar to RA in many ways, only muscle based, and one of its old names was in fact muscular rheumatism.

Having got over the initial shock and feeling of oh hell, something ELSE to contend with, I can see some reasons to be cheerful though!

1. My sister-in-law has had fibromyalgia for quite some time now – grim for her, but it’s handy for me to have someone I can talk to who really understands what it’s like.
2. It’s not like having RA twice over – which was my initial feeling. Fibromyalgia (which makes you feel generally crap and all over achey, and actually affects muscles) is not progressive and not (if you can crack it) permanent.
3. The current most popular theory about fibromyalgia is that it’s fundamentally caused by a lack of deep sleep. People with fibromyalgia may be insomniacs, but just as often they’re people who seem to get plenty of sleep, but it’s REM sleep (dreaming sleep) rather than deep sleep, and that’s not good enough. And the good news is there ARE things I can do that can improve my sleep.
4. There IS a drug that’s often successful in curing fibromyalgia if given in small doses (amitriptyline) but it has some unpleasent side effects including weight gain, the last thing I need! But before I try that there are also things I can do to try to balance my own sleep pattern. These are getting aerobic exercise (kinda tricky with RA but I’m working on it), having a regular routine and going to bed at similar times each night, reducing tea and coffee (a real challenge for me, but as most of it is instant and decaf I don’t think it’s much of an issue really) and possibly trying a supplement derived from griffonia (griffonia simplicifolia) seeds, called 5 htp, which increases seratonin in the brain and may help to improve sleep.

5. Because there are things I can actually do to help myself, however challenging they may be, I actually feel empowered – I feel I have a chance to kick this latest thing right back, whereas with the RA I feel, I suppose, pretty disempowered; I just have to lie back and hope the meds work.

So … right now I’m feeling surprisingly positive about the whole fibromyalgia side of it. Let’s hope I can keep up the exercise, regular bed times etc. and that that actually does do the trick. As to the RA, I’m on an increased dose of methotrexate although the consultant was wondering if I was just one of those people it wasn’t going to be great for – but having had a very good response to it early on, she and I both think it’s worth a shot to give it another few months on a higher dose. After all, in the UK on the NHS with mild RA, there’s not much alternative!

Psychology of Flares

June 15, 2009 at 1:03 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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I had a really good week last week – out three evenings during the week (OK, not exactly boogieing the night away, but still out and having fun), an exhibition and a carnival at the weekend, and some gorgeous walks in the local wood and heath with hubby.

I can’t say it was a pain-free week unfortunately, but it wasn’t TOO bad. I did worry, of course, that was overdoing it, and perhaps I did … I feel fairly rubbish this morning … but then again it’s Monday morning and I’m back at work, so that’s normal, isn’t it?

So while I absolutely KNOW that flares are a thing that happens and they are not ‘just in your head, dear’, I do wonder if I’ve kind of talked it up by thinking I was overdoing it and worrying that I’d have one.

Not that I’m sure I’m having one now – but you see, I’m still worrying about it … very silly really; why can’t I just get on with my life and put the worry to one side?

Maybe it’s because I’m for once NOT particularly stressed at work, not stressed about Tiny cat etc. etc., stopped stressing about someone I used to consider a friend and don’t anymore … I’ve run out of other things to get wound up about and I have to stress about my RA!

Hmm, I’m not really managing to say what I want to say here, but I’ll post anyway and perhaps someone can make sense of my ramblings. If so, please comment as I could od with some sense right now!

Ooooh no it hasn’t …. oooh yes it has …. oooooh no it hasn’t …

May 21, 2009 at 9:29 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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Did I say the inflammation and pain had calmed down again?! HAH!! Well, it did I suppose … for a few days, then it was back, then it was gone again, then it was back … but I definitely don’t think the Arcoxia is as effective as the diclofenac was. Trouble is I REALLY don’t want to go back on the diclofenac as my stomach is actually normal now for the first time in about a year!

OOPS!!! Missed a physio appointment

February 12, 2009 at 9:55 am | Posted in rheumatoid arthritis (RA) | Leave a comment
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Well I’m feeling a right idiot at the moment! I have had a physio appointment on a Wednesday afternoon (or very occasionally a Wednesday morning) since just after Christmas. Last week my physio said, ‘I’m not in on Wednesday next week, but I’ve got one on Tuesday morning if that’s OK?’ It was fine, so we booked it on.

I’m sure you can see what’s coming … I didn’t put it on the calendar, and quite late on Tuesday afternoon I thought to myself, ‘Hmm, wonder what time that physio appontment is tomorrow?’

OOOPS! By the time I phoned to apologise they’d all gone home for the day, but I hope she got the message. Perhaps she’ll have forgotten by the time I see her again, as she’s not in next week anyway!! So I’ll have gone THREE WEEKS without physio by the time I see her again.

Still – things seem relatively good at the moment, so I’ll just have to keep using the TENS machine and hope things stay stable until I see her again …

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