Cutting back on the tabs!

June 13, 2014 at 10:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 9 Comments
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You may have noticed I haven’t actually said anything much about my RA for a while … well that’s because it’s not really affecting me in a big way, and hasn’t been for a while. And yes – I do appreciate how bloomin’ lucky I am!

I saw my consultant the other day and for once we were in agreement – things are going well both from his point of view (bloods and 2-second examination) and mine (how I actually feel). These two things rarely combine but this time they did, and what’s more, six months ago when I saw the nurse things were going well too, so we’ve made the decision to cut back on the tablets.

I must say I felt awfully brave doing that … still do actually, it’s scary how dependent one gets on the comfort of knowing that if you keep taking the tablets things are mostly OK. It’s only the anti-inflammatories that I’m cutting back on at the moment, and the idea is that if that goes OK I’ll step down my methotrexate next time I see him. In fact, I’ve cut out the anti-inflammatories altogether for five days so far and things are going well. Apart from the odd twinges in my bad knee and occasional mild stiffness and achiness if I wake up after a cold night, I’ve had very little indication that they were making any difference. Unlike the methotraxate, there was no build-up with the anti-inflams I was taking, so the good news is that I can cut them out for the moment but if I have a flare, or just a bad, achy day, I can take one whenever I need to.

Of course we’ve had five days of glorious sunshine and DRYNESS – which I’m convinced makes a difference, so we’ll have to wait and see how things go when that stops – and given it’s the weekend that will probably stop tomorrow! Watch this space! I’m really hopeful though that things will carry on going well and I can reduce the methotrexate in six months’ time!

Breathtaking incompetence … but I’m glad … no, really …

February 27, 2014 at 7:02 pm | Posted in rheumatoid arthritis (RA) | 6 Comments
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I’m Pollyanna right? I can do this glad-game thing! OK, I’m glad I’ve had to go to the surgery and the chemist three times this week because it’s given me an opportunity to enjoy more of the beautiful spring weather (in between the showers). I’m glad the doctor completely screwed up my last prescription in three different ways, because otherwise I wouldn’t have had that lovely experience I’m so glad about. I’m glad that I had to go in to the surgery reception tonight and point out that even after a conversation with the doctor yesterday, he had not sorted out the correct repeat date for my folic acid, because if I hadn’t, I wouldn’t have had that amusing conversation with the receptionist about kicking her cat.

Hmm … doesn’t sound too convincing, does it, really? Well I am at least trying – but it’s very trying, especially as I’m still at the tail end of a flare.

Here’s what happened – in brief – I hope, although I do have a tendency to waffle on, as you may have noticed.

I put in my repeat prescription as normal, picked it up Monday, got it home and realised that my folic acid was missing. As my folic acid was the only thing I’d run out of (I just ordered all the RA drugs at once to save another visit to the chemist) I was a bit peeved. I contacted the surgery reception and had a conversation something like this:

Polly:     I’ve collected by repeat scrip but it doesn’t include my folic acid.

Receptionist:     Ah … let me look it up. Oh I see, that’s because you’re not due any until March.

Polly:     Yes I am, I’ve run out.

Receptionist: Oh no, you can’t have. You see it was issued last month, and you take it three times, on Wednesday, Friday and Sunday.

Polly: Yes

Receptionist: So that’s three times a week

Polly:     Yes

Receptionist: And they issue you twelve, so …

Polly: Yeeeeeeees …

Receptionist: <lightbulb going on> Oh! That is actually a month’s worth, isn’t it?

Polly:     YES!!!!!!!!!!

Receptionst:      Oh … in that case it looks like the doctor’s made a mistake.

Well, to cut a long story short(ish) that wasn’t the only mistake he’d made, so although I was able to have my folic acid rushed through and pick it up in time for me to take it on Wednesday, I then realised there were two other things (non RA-related) also missing from my prescription! I checked the repeat prescription paperwork and it quite clearly said that those things were due now … and that the next batch of folic acid was due in … April.

Noooooooooooooooooooooo……..

So I phoned again and asked for a doctor to call me back to discuss this, which he duly did! I had a very pleasant conversation with him, while being driven to my mum’s house by a colleague in order to turn off mum’s faulty burglar alarm … but that’s a whole nuther story … and, after an entire repeat of the conversation with the receptionist – ‘You take it three times a week … we issue twelve … OH!’ etc. he assured me he’d change it on the system and also put through a prescription for the other two things.

Tonight I went to pick them up, feeling happy, relaxed and full of the joys of spring. I went into the chemist and sure enough they did have my other two items ready. Hurrah. Then, foolishly perhaps, I checked the paperwork. Instead of saying ‘Folic Acid – due 26 March 2014’ in nice, neat print, it said ‘Folic Acid’ and then 26 March 2014 scribbled in in biro over the printed ’26 April 2014’! All very well except that a) I could do that myself, and indeed when I next put in a repeat request the doctor (probably not the same one) would assume I HAD done it myself and just not issue me any, just like the last two months and b) what happens when I want some more in May or June or whenever and the issue date is for two months down the line again?

So I went in and, having honestly been really nice and polite to the receptionist the first time (and not mentioning breathtaking incompetence at all), and really nice and polite to the doctor (in spite of mum’s alarm going off in our ears in the middle of the conversation), this time I blew my top, flipped my lid and generally had a big squawk! The receptionist was lovely – didn’t apologise exactly, they never do I’ve noticed, and neither do the docs, probably terrified if they say sorry I’ll sue them for something, but was very helpful. She put in a note for the doctor saying it did need to be changed, please, and suggested I call tomorrow to find out if it’s actually been done. (She obviously has as much faith in the system as I do!) When I said that I was sick to death of going in there and had had to come in three times in the last three days she said, ‘You should try working here. I love my cat, but honest to God I go home each night and want to kick it!’ Don’t tell Enormous Cat, but this evening I knew how she felt!

At last – significant, coordinated research into the WHYs of RA!

October 9, 2013 at 11:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 3 Comments
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Look around the RA blogging community for a while and you’ll see some consistent themes. One is that it’s hard to explain to Joe Public what RA is – another is that most of the drugs are by-products of research into other diseases (methotrexate for example, and most of the biologics were developed as cancer treatments) and there is little fundamental research into RA.

That picture has been getting better over the last few years, and it’s taking another step in the right direction. Arthritis Research UK, along with the Universities of Glasgow, Newcastle and Birmingham,  is funding a major new initiative, the Rheumatoid Arthritis Pathogenesis Centre of Excellence, to be run from Glasgow. The centre’s main focus will be on why RA starts, why it attacks the joints, and why it doesn’t stop. These are fundamental questions, basic science, but the answers, if they can find them, are likely to lead to a host of potential new treatments.

As I understand it the ‘centre’ is virtual rather than physical, but it will mean the three universities and other partners undertaking major collaborations into these fundamental areas.

Science is a slow business – results may be a long time coming – but it’s great to know that there is a good level of funding for this fundamental research into rheumatoid arthritis.

And remember – if you’re based in the UK too, you can get 20% of Physicool products until 9 November 2013.

World Autoimmune Arthritis Day 2013

May 2, 2013 at 8:38 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | Leave a comment
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World Autoimmune Arthritis Day – yes, it really is global, because it’s also virtual. All you need is an internet connection, and it’s FREE.

REGISTER for FREE to attend World Autoimmune Arthritis Day’s 2013 Virtual Convention, here: http://worldautoimmunearthritisday.org/expo/

World Autoimmune Arthritis Day is an annual 47-hour event where nonprofits, advocates, and experts from around the world unite in order to provide educational and awareness information to patients, their supporters, and the general public.

If you ‘attended’ in 2012, which was a great event, this one should be even bigger and better, with Nonprofit Booths, Vendors, a Raffle and a special feature: A Day in the Life with Autoimmune Arthritis (an Apple/Android app and Exhibit Booth).

It starts at 11am British Summer time or 6am ET/USA on May 19th and ends at 10am British Summer Time or 5 am ET/USA May 21st, 2013. It is an interactive, LIVE, Virtual Convention that you can attend for FREE…just find an internet connection and join the rest of the world for 47 hours of education and fun!

A new drug target identified for RA

January 31, 2013 at 10:12 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 1 Comment
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A protein called IRHOM2 has been identified as a possible new target for drugs aimed at treating RA, and could be useful for those who do not respond to anti-TNFs or even eventually replace anti-TNFs altogether. The full article on IRHOM2 can be found here, but here’s a short summary.

TNF or tumour necrosis factor has a useful purpose in the body; it is a signalling protein and it signals the body to produce a protective inflammatory response. Thus if a part of you is infected, TNF starts the process of inflammation, which takes immune response cells to the appropriate area in the blood, and they start to attack the disease-causers. In this case inflammation is a good thing.

However, when too much TNF is produced, immune cells start to act on things they shouldn’t, like our joints – leading to RA.

Anti-TNFs attack TNFs directly, and do a mighty fine job for many people, but they are toxic and can have nasty side effects.

IRHOM2 is a protein that helps to release TNF from where it sits harmlessly and inactively on the surface of cells, so attacking IRHOM2 should have the same effect as attacking TNF – reducing in TNF release and therefore reduction in inappropriately active immune cells, and so reduction in RA symptoms.

It is hoped that drugs targeting IRHOM2 would be less toxic, because they will only block TNF release from the specific cells that contribute to joint damage, and they could be an alternative for those who don’t respond well to anti-TNFs.

There is, of course, a long way to go. This is just the identification of a possible target. The next step is to find something that will actually block IRHOM2 and be safe to use in patients. Then there will be the long, slow plod (quite necessary for safety reasons!) through clinical trials, with no doubt a few failures along the way – but some years down the line this could be a real breakthrough. Let’s hope so!

 

p.s. I do hope this makes sense! I’m really, really tired and I haven’t had hubby proofread it yet!

I’m glad I’ve got the sniffles!

November 2, 2011 at 9:55 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me | 1 Comment
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I have the post flu-jab sniffles, so presumably that means my immune system is going to respond and do its job in creating anti flu antibodies, which will be very handy if we have a flu epidemic this year … provided of course that it’s the ‘right’ flu. I had a slightly sore throat yesterday afternoon, post flu jab, and distinct sniffles this morning, but at least the big red lump on my arm is now a big red pinprick with a small red rash around it, and much less painful.

All more than worth it though if it keeps flu at bay! If the Flu Jab had a Facebook page I’d sign up to be its fan. (Oh lordy, perhaps it does … )

The flu jab comes of age!

November 1, 2011 at 6:05 pm | Posted in Me, rheumatoid arthritis (RA) | 4 Comments
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I’ve been noticing a few improvements around the whole flu jab situation this year. In the previous few years I have a) struggled to book in for one because the surgery receptionists didn’t know about immunosuppression b) been disgusted at the ‘cattle market’ approach to the flu clinic, which I thought was restricted to our rural Norfolk surgery, but then found, via Helen at Pens and Needles extended to Canada too!

Here’s the way it used to work: You fight to get into the clinic in the first place, get your slot (which if I remember rightly was ‘morning’ or ‘afternoon’) and then turn up to join the queue extending all around the waiting room and out the door. You are told to be ready and waiting with your arm exposed ready for jabbing, even though the surgery is freezing because the door is permanently open due to people standing in the entry waiting for flu jabs. The receptionists ask why you were there if you looked under 70, and are puzzled when you tell them … but let you through anyway.  You have now been singled out in front of hundreds of somewhat elderly people who are now all staring at you and wondering if you’re trying to con the system, so you feel great! You get to the far side of the waiting room eventually and are asked to ‘fill in this form’. The form has nothing to do with the flu jab but asks if you smoke and would like anti-smoking advice. (Apparently doing this meant they could tick a box somewhere and claim extra funding for ‘offering anti-smoking advice!) You get through to a corridor where all the doors of the rooms are open and wander about until someone says ‘in here’. You go in, and with the door still open and other bewildered patients pottering about in the corridor behind you, you’re asked, ‘Why are you having the flu jab?’ You tell them … again. They say, ‘OK’ and jab you, and then follow that up with something like, ‘Oh – hope you aren’t allergic to egg or pregnant – should have asked you first.’ Fortunately I was neither!

Here’s how it is now: You phone up and say you need a flu injection. The receptionist says fine, she’ll book you in. She goes to your record, sees you’re not elderly and says, ‘Why?’ You say, ‘Immunosuppressed.’ She says, ‘That’s fine,’ and books you in. To your astonishment you’re given an actual time, 3:10, not ‘afternoon’. Then later on in the week you find out that some of your friends have already had their jabs at the surgery and they’re doing it like a proper clinic – called up individually, closed doors, proper checking that it’s OK to give you one etc. Wow – you’re impressed!

You go for your regular methotrexate blood test and notice a big poster in the surgery window about, of all things, getting the flu jab if you are immunosuppressed! After a general rheumatology chat, taking bloods and general chitchat the nurse says, ‘Have you had your flu jab yet?’ ‘No,’ you say, ‘ but it’s booked in for next week.’ ‘Would you like it today?’ she says. After picking yourself up off the floor, rubbing your ears and asking her if she could please repeat herself because you thought she’d just offered you the flu jab today, and finding that in fact that is what she said, you say, ‘Yes please.’ After she’s sucked the appropriate amount of blood she goes and gets the flu injection. ‘I don’t know if I can roll this shirt up far enough’ you say. ‘ I wasn’t prepared for this.’ ‘That’s OK,’ says the nurse with a grin, ‘We can do it through the shirt. On second thoughts better not, the needles are so flimsy we’re having trouble just getting them through the skin!’

Aha – you think – I’m back in the land of normality now! Damn, I was enjoying this strange fantasy world where the surgery actually seems to be doing flu jabs in a sensible and logical manner.

But then you find you can roll up your shirt and in fact the needle goes in fine, if somewhat painfully!

‘Right,’ you say, ‘I suppose I’d better go and cancel my appointment for next week at the front desk.’ The nurse smiles and says breezily, ‘Oh no need – with this new database system we’ve got I can do it really easily from here,’ and she does!

Now you might think surely that wasn’t actually that much to ask – you might say, as ‘brother Penguin’ did some time ago, that your surgery has been doing this for years, but when you’ve become conditioned to being in the cattle market scenario for so many years, this just seems incredible, fantastic, too good to be true …but it’s not. It really happened.

Wooohoooooo!

Incredibly the nurse told me that some patients had actually complained ‘We wanted to come to the big flu clinic like last year!’ There’s no pleasing some people!

Polly Pulls It Off

March 14, 2011 at 9:34 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 9 Comments
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This perfectly innocent post title, no double entendres  intended, is supposed to set the 1950’s scene for you. Maggie (friend and frequent commenter on this blog) has always said that the town where I live is like stepping back into the 1950s, and generally I reckon this is a pretty good thing. The 1950s is a pretty nice, cosy, friendly place to live; that is until you get hit by … da da da daaaa, 1950’s Doctor Man.

Alas, the knee has continued to flare and I decided, after having a lot of stiffness and pain yesterday, that I really should go back and say a) the steroids worked but they ain’t workin’ no more and b) can you ask the physio to have a look at the knee please? So I did. Of course, as I’ve mentioned before, if you make a ‘same day appointment’ (and the choice is same day or 2.5 weeks away if you’re lucky) then you can’t choose your doctor; you just see whoever is available.

Now when I did this two weeks ago I hit the jackpot with Dr Locum Eye-Candy, but alas, this week my luck ran out and I got 1950s Doctor Man. Now don’t get me wrong, he was pleasant enough in a dried-up old stick kind of a way, and true to his 1950s roots he did listen patiently and he did actually bother to examine me properly (two things you certainly can’t count on these days in the NHS!), but then the downside of being in the 1950s kicked in, and I got the 1950s lecture about RA. I thought things had come on a lot since this kind of thing: ‘Well, that’s the nature of the disease. It’s a progressive disease I’m afraid and it will flare now and then. Now, I’m not trying to depress you but really that’s just the way it is and there’s not a lot you can do about it. You’re on a high level of methotrexate and other medication already, so … ’ And so on, and so on, for about five minutes.

I’m not actually saying he’s entirely wrong, by the way – fundamentally that’s probably true, but he didn’t make one single suggestion about sensible things I could do. OK, I wasn’t expecting him to suggest Reiki or a gluten-free diet or anything else that your average 2011 British GP would consider a bit ‘far out’, but what about, for example: exercise … or rest, apply heat … or cold, consider a steroid injection in the joint, come back if it gets worse, have physio, get hubby to do all the cooking, washing up, shopping etc. for the next few weeks. <Grin – of course he wouldn’t suggest that! Not the done thing at all in the 1950 to have a man doing all that!>

I must admit I wasn’t feeling very ‘with it’ and I damn near forgot to actually ask what I’d gone in to ask, which was since I was doing a 50 minute round trip every week for ultrasound treatment on my shoulder at the moment with the physio,  could he please ask the physio to treat the knee too? Finally I did remember, and, give him his due, he agreed immediately and not only that but he actually wrote me a note (with his very smart 1950’s fountain pen) to take in with me, hopefully circumventing the need to wait five weeks for the next official appointment for a knee referral, by which time the flare will probably be over.

I did also ask him whether I should be exercising it or resting it, and he said definitely resting it … but is this right, I wonder, or is this just more 1950s medicine. Not that long ago the only recommendation for RA was ‘bed rest’!

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!

Sick, sick, sick …

January 29, 2010 at 2:45 pm | Posted in Me | 13 Comments
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No I’m not actually sick, I’m just sick to death of the way hormones seem to rule my life. Until Wednesday I’d been menstruating pretty much constantly since before Christmas.  By Sunday last I looked and felt like death warmed up, was bursting in to tears at the slightest provocation (or no provocation) and figured it was time I saw the doc. I knew I’d have trouble when she recommended a tablet that messes with the hormones, but heck, what else are you supposed to do stop a continuous period? So I bit the bullet and went on to Norethisterone (synthetic progesterone). I was a good girl – I didn’t even look at the side effects when I started it on Tuesday. I didn’t even look to see it was synthetic progesterone at the time.

Well the good news is it worked like magic – by Wednesday my seemingly never-ending period had stopped, the hot flushes hadn’t come back and I had very few RA symptoms. By yesterday I felt tired but so much better than I had been feeling. Then last night I woke up at two in the morning with a gnawing hunger pang in my belly – I lay in bed fantasising about porridge with tons of Golden Syrup on it! Fortunately Middle-size Cat and Enormous Cat were both firmly on top of me, purring and being cute, so I resisted the temptation as I didn’t want to disturb them. (Note, disturbing hubby didn’t even enter into the equation – awful, aren’t I? Then again, not much does disturb hubby once he’s asleep!) It’ll pass, I thought.

I woke up again at about six-thirty with a really awful gnawing hunger pang in my belly again! Hmm, I thought, this isn’t good. Heck, it’s Friday. Let’s go wild and have some porridge (instead of the usual and rather better for me Bran Flakes). I had some porridge. The hunger pangs didn’t go away. I made my lunch – beef salad. Normally when I’m making my lunch the absolute last thing I want to do there and then, straight after breakfast, is eat it. Today I could have eaten the whole damn lot. (I didn’t, but I could have done.) Tiny and Middle-sized cats were lucky to get their usual rations of my lunch today!

The gnawing hunger pang in my belly has NOT gone away. I ate a mid-morning snack of soya nuts, I had another slightly later morning snack of a few grapes and some dates. I had an apple. (All this before lunch!) Still gnawing hunger pang in my belly.

I had my lunch. Gnawing hunger pang in my belly. I hate to admit this but I then went to the local bakery. I’m not going to admit to what I bought (and ate) but suffice it to say that Mrs Baker would have been quite shocked if she’d known I was off back to the office to eat it all there and then, but that’s what happened. So would hubby, for that matter. He would have rather hoped I might have brought a bun home for him.  (Sorry darling!)

Guess what? Gnawing hunger pang in my belly – still. My helpful friend Weeny’s response was, ‘You’re hungry? So what’s new?’ (She’s renowned for her sympathy skills – her hubby and I tease her regularly about their lack!) The thing is this isn’t just hungry – it’s like a pain, it has to be pandered to; it’s constantly demanding. I can think of nothing but food. I just want to eat everything in sight. I look at my half-cup of cold coffee and picture a big hot chocolate swirling with cream and marshmallows; I look at the snow swirling around outside and think of ice cream; I don’t quite look at ‘the boss’ and think ‘roast beef’ but believe me I’m not that far from it. And to add insult to injury I’m doing a transcription  all about chocolate!! (I kid you not.)

You know what? I don’t think I’ll be taking any more Norethisterone!  I looked at the side effects this morning and sure enough weight gain and appetite change were nestled amongst them. I’ll put up with a constant period, I’ll live with anaemia and fatigue if I have to, but I really can’t cope with any more of this!

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