Possible ‘cure’ for RA – this one sounds better than the last one …

April 16, 2010 at 1:01 pm | Posted in rheumatoid arthritis (RA) | 4 Comments
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OK, so I really depressed myself with my last post – what a dumb, trivial thing to get depressed about in the scheme of things,* but that’s the way it is sometimes when you’re an overweight dumpy-frump with curled-up feet and possibly PMT!! So anyway, here’s something potentially more cheerful!

According to The Daily Telegraph this morning, there’s another ‘one-treatment cure for RA’ in the pipeline, and unlike the last one, that needed to be injected into every joint, this really is a one-off treatment that could put patients into remission for years or even a lifetime.

To say it’s early days would be a bit of an understatement, but the good news is that, like most RA drugs, it’s a drug, otelixizumab, that’s already been shown to safe in humans because has already been used ” in much stronger doses to prevent transplant patients rejecting donor organs”. If it works, we’re looking ten years down the line – they’re just about to start the first clinical trial in humans. And if it works the researchers have already said that it might potentially only help people in the early stages; “”However, the chance of this happening in patients who have had the disease for a while is not altogether absent,” says Prof John Isaacs of Newcastle Uni. Oh yes, and at the moment ‘one-off’ is not quite as it sounds – you’re looking at between two and five hours A DAY for FIVE DAYS of intravenous injection. Worse than dialysis. But the point is that unlike dialysis that’s it – you’re cooked. Off you go and hopefully no more RA damage. And also they’re hoping that if they can prove it works, they will be able to produce a different form of the drug that patients can administer themselves (and that presumably will not take ten hours minimum).

This is a nicely balanced article in my opinion – and I rarely say that about medical journalism – it’s not full of the hyperbole that the last one injection cure seemed to bring out and it doesn’t say ‘lots of old people will benefit’ as did the last arthritis article I commented on, although Kate Devlin hasn’t been brave enough to try and say what RA is (probably having seen so many medical journalists shot down when they do that!) The closest she gets is “The condition is different from osteoarthritis, the ‘wear and tear’ form of the disease that typically effects older patients.” Well it doesn’t say much, but you can’t argue with it, really. ;o)

This may not be something that will ever help me (because ten years from now I guess I won’t be considered to be in the early stages of the disease, even if it stays mild), and it probably won’t help you if your’re reading this blog, but anything that really has the potential to ‘cure’ RA (and obviously it won’t undo any joint damage that’s already taken place, but if it stops further damage – great), has got to be good news – and especially good news if you have RA and also have children!

* Not that I’m suggesting your wedding is trivial, Mrs Mooseface!

Weddings and wearables

April 15, 2010 at 12:57 pm | Posted in rheumatoid arthritis (RA) | 15 Comments
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I have a wedding to go to in August – I’ve mentioned this once or twice before! – but what am I going to wear when I can’t wear ‘nice’ shoes?

I get the feeling (probably erroneous) from my mum that she and other family members  have been discussing how to make sure Polly doesn’t look too awful for the wedding. <Sigh> Shoe-wise I really can’t wear the ugly contraptions that are my everyday-wear, but I want something deep and wide enough to fit my orthotics, closed-toed so I don’t feel self-concious about the RA side of things and that doesn’t look like this:

Dr. Scholl's - Men's Michael Air-Pillo Gel Velcro Shoes, Wide WidthI’m sure you can see why!

Thanks to my ‘interesting’ body shape it’s a sod to find trousers that fit properly so the obvious trouser-suit option probably isn’t a serious option … although I suppose I could alter it … and anyway, it’s going to be summer, so those kind of shoes are going to look wrong with ANYTHING! And I don’t want to look like this:

(With apologies to LimeGreenSquid for nicking his picture. If you object, let me know and I’ll take it down but it’s just soooo perfect!)

Since methotrexate’s magic weight-loss effect seems to have lasted a mere two weeks, I suspect I won’t be losing a few stone before then and presenting a sylph-like figure either, so all in all I’m a bit fed-up. There’s no pleasure in clothes shopping when you look and feel like this and I’ve never in my life had pleasure from shoe shopping – so while I’m really looking forward to the wedding, the preamble is worrying me slightly.

Pumps or flat Mary-Janes won’t fit the orthotics, but at least they’d be flat. Maybe that’s the way to go and a day without orthotics might not hurt toooo much. (I can see the steam coming out of hubby’s ears when he reads this, but sometimes a gal’s gotta do what a gal’s gotta do!)

Whatever I end up with it has to be flat. I don’t fancy spending the week after the wedding in self-induced vanity-related agony!

Bright ideas anyone?

Woohoo – no queasiness!

April 15, 2010 at 11:26 am | Posted in rheumatoid arthritis (RA) | 3 Comments

Boohoo – no weight-loss.

An unexpected visitor and a grand day out!

April 12, 2010 at 9:35 pm | Posted in Me, rheumatoid arthritis (RA) | 4 Comments
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Saturday was an absolutely glorious spring day – sunshine by the ton! My Saturday started by being woken by an unexpected visitor in the garden. I thought it was a cat and couldn’t understand why our cats weren’t responding to these incredibly loud meeows. The cats, of course, knew better! Here’s a picture of our visitor.

Peacock

Peacock in our front garden

The sight of him was a grand start to the day, but it just got better and better. Thanks to the f-f-folic acid on F-F-Friday I was f-f-feeling f-f-fine and I braved my first trip out in Hubby’s open topped MG. As bravery went, I wasn’t very! I had a long-sleeved t-shirt, two jumpers, a jacket, a ‘slanket’, a blanket, a hat and gloves!! It felt fab though, being driven along with the wind in my hair … there were times when I felt as though the wind was in my very bones, but mostly it was heavenly.

We visited East Ruston Old Vicarage Garden first of all – an extraordinary place which must surely have pioneered the idea of garden rooms. It’s very close to the coast (as you can see from the picture, where Happisburgh (pronounced hays-borough of course!)) Lighthouse is visible through a cleverly placed hole in a hedge, but due to incredibly skillful planting and deep, deep double hedges, they can grow the tenderest of plants, including stunning camellias.

View of Happisburgh Lighthouse from East Ruston Old Vicarage Gardens

View of Happisburgh Lighthouse from East Ruston Old Vicarage Gardens

Camellia at East Ruston Old Vicarage Gardens

Camellia at East Ruston Old Vicarage Gardens

It has to be one of the easiest places in the world to get lost in because there are so many paths and so many nooks, but although it feels really spacious it’s actually quite small so not even I can really get lost for long!

We made a couple of friends while we were there. The first can be seen below on Hubby’s lap. Note the gazes of mutual adoration. Not sure who’s cuter!

Hubby and the garden's resident chocolate Burmese cat

Hubby and the garden's resident chocolate Burmese cat

The second was equally cute but slightly more worrying. We’d found a nice secluded bench to sit on and soak up the sun for a few minutes, and were enjoying the peace and quiet when suddenly a very small child came barelling in from nowhere and jumped up on the bench next to hubby, pulling his legs in and crouching as small as possible. I whispered ‘Are you hiding’ and he nodded. After a few seconds, when no one had come to find him, he got bored and said ‘Did you know there’s a dinosaur head over there?’ We said we didn’t. (In fact we knew there wasn’t, because we’d already noticed the cow’s skull complete with horns in the part of the garden designed to mimic the Arizona desert, complete with a range of cacti etc.) I asked him if he was sure it was a dinosaur head and he assured me that he was – it was, he said, in fact a Tyrannosaurus Rex head. When we asked him how he knew he looked at us pityingly and said ‘Because it’s got horns!’ Then, grabbing a rather surprised Hubby’s hand, he said ‘Come and see!’ and dragged Hubby over toward the cow’s skull. ‘You’d better come with me!’ said Hubby hurriedly, as images of angry parents, police, child abuse accusations and court cases flashed through his mind! So off the three of us trouped, like a line of ducks, small child pulling Hubby along by the hand and Hubby pulling me along.

Fortunately at this point small child’s father caught up with us. More fortunately he obviously knew his son well! ‘Ah,  I see little Jonny has adopted you. Sorry about that. He has a habit of doing that.’ I explained that we were off to see the Tyrannosaurus head (and added ‘cow skull’ sotto voce when he looked confused). Laughing and apologizing he came with us, and when we’d admired the most impressive dinosaur and Little Jonny was satisfied, we went our separate ways. As we wandered of Father said to Jonny, ‘Which way shall we go now then?’ and Jonny replied loudly, ‘Well I’m going with them!’ Fortunately Father persuaded him otherwise, probably with a bribe of ice cream as we saw them later in the cafe!

The rest of the visit was less eventful but still very enjoyable, and after a tea break we headed off around the coast and stopped at Cromer. (Penguins like to see the sea!) We finally rolled home just as it was getting dark, tired by very content. Hubby commented that I was looking and sounding and moving better than I had for quite a while – I felt it too. Amazing what a spring Spring can put in my step!

Feeling a tad creaky today (Monday) but it’s m-m-m-Methotrexate day so hopefully by tomorrow afternoon I’ll be full of the joys of spring again (although perhaps a little queasy as I’ve not managed to see the doc about changing the folic acid dosage and timings yet!)

Yay! Finally …

April 7, 2010 at 9:15 pm | Posted in rheumatoid arthritis (RA) | Leave a comment

Other people have posted many times about the wacky searches some people use to stumble across their blogs, and finally I have a collection of thoroughly bizarre seeming searches of my own. Here are my latest ‘top searches’. My favourite is the first one:

  • i have rheumatism shall i stop my porridge?
  • pollyanna didn’t feel a thing
  • crochet scarf
  • how to crochet a scarf
  • cat arthritis flare up

Guess it goes to show that Google is not yet perfect; my blog must have been such a disappointment to most of these searchers! Perhaps number five will try cod liver oil for their cat – if so good luck to them; Middle-Sized Cat won’t go near the stuff … and who can blame him! Mind you, they might have been searching to find out if a cat could cause an arthritis flare-up I suppose!

Sick as a Parrot

April 7, 2010 at 9:32 am | Posted in rheumatoid arthritis (RA) | 12 Comments
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Well, you learn something every day – I thought I was feeling sick as a parrot this morning, but when I looked it up it turns out I’m not. Sick as a parrot, in case I’m not the only one that didn’t know this, means depressed or disappointed about the outcome of something … I thought it just meant feeling sick … and boy do I feel sick!

I guess I shouldn’t be writing about this now because the more you think about this kind of thing, the worse it makes you feel. I think it’s the m-m-m-m-methotrexate as this is the second week in a row that I’ve taken my m-m-m-m-methotrexate on a M-M-M-M-Monday like the good girl I am, only to start feeling rather queasy Tuesday or Wednesday … right up until Friday morning when I take my f-f-f-f-folic acid … let’s see if the same happens this F-F-F-F-Friday.

I guess I could take something to settle my stomach, but my brother and sister-in-law-to-be (aka Mrs Mooseface on my comment section) are getting married in September (00ps, I meant August), and I’m kind of hoping that this might help me lose some weight in time for the wedding. Oh foolish vanity …

Amazing, the power of four whole days off!!

April 6, 2010 at 9:25 pm | Posted in rheumatoid arthritis (RA) | 2 Comments

I just took the whole of the Easter break off – Friday to Monday. I was seriously tempted to take Thursday too but it’s a good job I didn’t as I landed two lucrative jobs on that day (maybe because everyone else had taken Thursday off?) Anyway, Friday was OK, great to have a break, I was really tired after a madly hectic March, but Saturday was extraordinary. I woke up feeling really well – not just ‘I don’t hurt very much’ well, or ‘I don’t feel too bad today’ well but really well – so well, in fact, that I actually spring cleaned (sprung clean?) the kitchen!

Now you have to appreciate that not only am I not much of a spring cleaner, I’m not much of a cleaner full stop. It’s hubby’s job, the housework – he even says he enjoys it. Well, after Saturday I have to say I have a renewed appreciation of how hard he works on his days off, getting the basic housework done. Admittedly what I was doing was more than basic – it was all those once a year jobs (or in many people’s cases once every few months jobs (and in some cases no doubt daily jobs, but if so – get a life!)), and it was a hard slog, but actually I quite enjoyed it (as a very occasional thing). It’s not something I’d want to do regularly. Of course part of the enjoyment was that I could do it – my hands didn’t hurt, in fact none of me hurt, and I was buzzing with energy. By lunchtime I still didn’t hurt but the energy had gone and I collapsed in front of the telly for an hour like a limp dishrag – but a limp dishrag with an enormous sense of achievement and well-being – especially knowing I had TWO MORE WHOLE DAYS OFF TO COME!

I did get lots of embroidery done towards my City and Guilds, and generally just lots of relaxing, which I really needed!

Pity I went and spoiled it slightly on Sunday by eating too much Easter chocolate and getting a bit of an upset tummy over Monday! Oops. Still, it was fab to have all that time off and I do feel SO much better for it! We culminated the break with a lovely walk in the glorious spring sunshine yesterday evening. My favourite season has always been autumn, but this year spring is a very close runner up and might just overtake!

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