Tags: arthritis, broke, cats, fatigue, joint pain, methotrexate, Middle-sized cat, money, MTX, NASTY, National Institute for Clinical Excellence, NHS, NICE, occupational therapist, OT, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stress
Firstly a ‘big shout out’ to Warm Socks for reading comment replies. Well done to you, m’dear! I also read them when I remember to tick the little box, but I usually don’t remember.
Secondly, for them as don’t keep up with comment replies, like me, tinglywinglypingly is a thing of the past – hurrah.
Thirdly, I had my methotrexate last night and, unlike last week, not only kept it down but slept like a log afterwards and feel great today. Middle-sized cat is also delighted, as he tends to sleep next to/on top of me, so he also got a good night. After a trip to the V-E-T yesterday he’s now costing me about SIXTY POUNDS A MONTH in medication … but of course he’s worth every penny, and more.
Hey ho – it’s only money … not as important as health.
I obviously value him more than NICE values me, or rather values other R.A. patients who are not so lucky as I am currently! This article in The Guardian tells an all too familiar story.
Tocilizumab (another biologic), which costs £9,000 per patient per year (so about the same per month as middle-sized cat costs me per year … but then consider the difference in resources between lil’ ol’ me and the British government … on second thoughts, maybe not; I’m not quite broke yet), is being given to patients in Scotland (and indeed most of the rest of Europe), but NASTY has decided once again that it’s too expensive for patients in England. And once again the fact that it could keep people in work and reduce the costs of unemployment benefit, keep them walking and reduce the cost of wheelchairs, keep them out of hospital and reduce the costs of round-the-clock healthcare … etc. etc. etc. has escaped them. It’s an argument I’ve had with them a few times before on this blog, here and here and
Tags: anti-TNF, appointment, arthritis, consultant, flare, GP, hospital, medicine, methotrexate, MTX, NHS, NRAS, nurse, nurse practitioner, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
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!
Tags: cold, doctor, fu, GP, methotrexate, MTX, R.A., RA, Rheumatoid arthritis, sore throat
1. Don’t become a GP if you have the personality of a lettuce.
2. Remember that it’s probably going to get pretty boring by Thursday afternoon – loads and loads of six-minute appointments seeing snotty little people who should have stayed at home – but it’s part of YOUR JOB NOT TO SHOW HOW BORED YOU ARE!
3. When examining a patient it might be helpful to say things like ‘I’m just going to feel your neck for glands’. Otherwise you may one day find yourself pinned to the wall at the back of the surgery by an angry young man who thought you were trying to strangle him.
Yes, you guessed it – I just saw a GP I didn’t really take to. And, as you might also have guessed, I’ve gone down with a stonking cold, probably courtesy of hubby, although mine is NOT flu. (No, I’m not suggesting he’s had ‘man flu’ – he had a temperature of 102 for two days; but I haven’t had a temperature at all.) It went with an equally stonking sore throat. When I looked in the mirror (as you do … don’t you? Well I do), I could see little red wheals right across my throat. When the GP looked he said he couldn’t see anything. Hmm, that’ll be because my tongue was in the way I expect. However, as he’d already decided to give me antibiotics given the fact I was on MTX for the R.A., and as we had had an instant personality clash and I wanted to get out of there a.s.a.p. I didn’t push the point.
So – all the usual drugs plus paracetamol, sudafed, antibiotics (third lot in a month I think). I’m heartily sick of all these drugs … but then again, the MTX is WORKING, so who am I to complain?
Tags: fatigue, hot flushes, methotrexate, MTX, pain, RA, Rheumatoid arthritis, stiffness, tiredness
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!
Tags: arthritis, fatigue, methotrexate, MTX, RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness
I was given temporary hope on this post from Warm Socks at Infinity-itis (Sorry, I can’t find the infinity symbol anywhere) on methotrexate side effects. Remicade Dream commented that she always had a mental fog on MTX day. Ahah, I thought, my problems of extreme dippyness (and fatigue) this week must have been caused by my increase in methotrexate.
I felt better for a minute – hurrah, all I have to do is blame the meds.
Then I realised the horrible truth – I take my m-m-m-m-methotrexate on a M-M-M-M-Monday and I was still being just as dippy yesterday … I actually forgot to go to a client meeting! (Thankfully she’s a nice person and happens to work in the next-door office, so a quick phonecall from here and I was there in a flash.)
Hubby has now identified the true root of the matter – I’m suffering from Dippy Penguin Syndrome. Unfortunately it is, as yet, incurable.
Tags: anti-TNF, biologic, combination therapy, golimumab, methotrexate, R.A., RA, Rheumatoid arthritis, Simponi
The EU are keeping busy with their approvals programme. Simponi (golimumab) is another biologic just approved for rheumatoid arthritis. It’s approved for moderate to severe R.A. either in conjunction with methotrexate or on its own.
Tags: arthritis, certolizumab pegol, Cimzia, disease progression, DMARDs, European Commission, FDA, injection, joint damage, methotrexate, MTX, NHS, NICE, RA, Rheumatoid arthritis
Cimzia (certolizumab pegol), a biologic produced by UCB and administered by injection under the skin, has got the OK from the European Commission for use in rheumatoid arthritis. (It was approved by the FDA in the US in May.) It has been approved both as a combination therapy with MTX for those with moderate to severe active RA who haven’t responded to treatment with DMARDs, AND as a treatment on its own where a patient can’t use methotrexate.
Trials showed that Cimzia brought significant benefits to patients that lasted for more than two years. Clinical data also indicates that Cimzia stops disease progression – or did for the length of the trial, which was around two years.
Of course the big question for the UK (and it’s a big question for UCB as well since the UK market is quite a significant one) is will ‘NICE’ approve it for use on the NHS? I wouldn’t like to try and guess but it’ll be an interesting story to follow.
Tags: arthritis, blood test, cats, GP, methotrexate, MTX, nurse, RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stress
I have had a bad day … but a good R.A. day!
Here’s how the day’s gone:
1. I had completely forgotten I had a blood test this morning, went sailing off to work, got there, realised that I should be going to the GP, turned around, and the red petrol light came on. Mad dash to fill up with petrol from my spare can before the appointment, because I KNEW that otherwise I’d forget.
Positive R.A. stuff:
- All results from the previous test were fine – in spite of a recent increase in MTX.
- The nurse only had to have one go at getting my blood instead of the usual Penguin is a pincushion routine.
- I got the top of the petrol can and it didn’t hurt!
2. For some reason the red light wouldn’t go out, so I decided to go and buy some petrol. Just as I’d driven PAST work on my way to the petrol station, the petrol needle readjusted and the light went off!! Aargh. Decided to get some petrol anyway and fill up the can. Filled up the can, put some more in the car, went in and joined the queue. There was a man in front of me but I didn’t take much notice of him, as you don’t. When I got to the front the conversation went something like this:
Penguin: Pump 2 please
Penguin: Number 2 … please.
Penguin: Pump … number … 2 … please?
Assistant: Ohmegawd, ohmegawd, ohshite, ohmegawd, stop Mr Pratt … Mr Pratt, Mr Pratt!* oh no he’s gone. Lydia, Lydia, shite, heeeeeelp.
As you may or may not have guessed, the aforementioned Mr Pratt had told her that he was on pump 2 and she hadn’t checked. It was obviously not deliberate as he had an account with them so it can be changed on that, but it caused havoc as far as me paying went, and added about ten minutes to my already delayed start at work.
Positive R.A. stuff:
- I worked the petrol pump and it didn’t hurt at all! (This is not usual at all for me.)
- Standing about patiently (and then mildly irritably, and then impatiently) while the assistant sorted herself out didn’t hurt either. My feet were fine.
3. I get to work, tell ‘the boss’ what kind of morning I’ve had and firmly announce that from now on the day is GOING TO GET BETTER! I am determined that this will be so. I am thinking positively. NOTHING ELSE is going to go wrong.
Then, at about 10:33 I realise I’m supposed to be in the cafe down the road meeting a friend for coffee …at 10:30. Aaaaaaaaaaaargh. I tell the lass that works for me (a.k.a. the boss) that if my friend phones, say I’m on my way (she’s a good lass, she could have worked this out for herself, but I’m panicking at this stage), throw my coat on and run (well, jog … well OK, walk fairly fast) down the road.
I’ve only gone a couple of hundred yards when a horrible realisation dawns. I phone the boss and ask her to check my calendar. Sure enough it’s NEXT Monday I’m meeting my friend for coffee. Another few minutes wasted out of a busy day!
Positive R.A. stuff:
- Racing down the road and my knee didn’t even twinge!
4. Had to take middle-sized cat to the v-e-t this evening. Hubby rang at about 4:30 to say there’s no way he’d be home in time. ‘That’s fine,’ says I, ‘I thought you wouldn’t be.’ I wondered why he was sounding so bothered about it. Then I got home, put MS cat in the box, picked it up and thought, ‘AH! That’s why hubby’s worried.’ I’d forgotten that MSC weights a tonne (approx.)
Positive R.A. stuff:
- OK … it hurt, I can’t deny it … but it didn’t hurt anything LIKE as much as it has done in the past!
So hurrah – what a great day – what a lot of signs that the MTX might be doing its job properly at last!
* Names have been changed to protect the idiot.
Tags: dosage, hospital, medication, methotrexate, MTX, RA, Rheumatoid arthritis, rheumatology nurse
Well … I saw the rheumy nurse on Friday … and thankfully it was NOT the same one that I’ve seen in the past, and this one was a) human b) non-patronising c) cheerful and, perhaps most importantly, d) helpful! OK, so she read the doctor’s notes all wrong to start with and got in a bit of a muddle, but I’ll forgive her that given the points above! Although, as suspected, having an appointment in August was a bit of a waste of time in a way, at least this nurse says definitely now she’s met me she’s happy for me to phone in September and say if I feel the MTX needs increasing, in which case she will increase it.
Interestingly this nurse is someone that one of my friends has seen in the past and thought was awful … obviously a personality clash, just like the one I had with the previous nurse I saw. At least I’ve been lucky enough to change.
We also discussed this whole three months/ six months between appointments thing and although the news wasn’t good, at least she was frank about it. What it boils down to is they’re underfunded and under-staffed and while they’d love to see me every three months, it ain’t gonna happen. However, they have apparently improved the helpline (hoorah for that as it was rubbish when I used it last!)
Tags: arthritis, consultant, doctor, doctor's receptionst, GP, hospital, methotrexate, NHS, NICE, nurse, nurse practitioner, RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
So, as I said in my last post, I got home from a cracking weekend away to find a letter telling me that due to my health professional being on annual leave, my hospital appointment for September 2009 was being postponed … for six months. Now it won’t surprise those of you who know me that I slightly lost my rag … it’s probably sitting somewhere with my marbles.
On Monday I phoned the hospital – the receptionist was suitably puzzled, perhaps even astonished, at the amount of delay, buy all she could do was put me through to the nurse practitioners’ secretary, and all she could do was add me to the cancellation list for September. ‘If you get to the top of the list, we’ll let you know and give you an appointment.’ She didn’t sound like she thought there was much chance of that.
So I asked her who I should make an official complaint to. She told me to contact the Patient Liaison Service and she put me through. This actually was NOT how you make an official complaint, but it was nevertheless a wise decision on her part as when I eventually spoke to the PaLS lady she was excellent – and sympathetic, unlike the secretary who had probably worked as a doctor’s receptionist before getting this job, and so I ended up NOT putting in a complaint…
But before I spoke to the excellent PaLS lady, I had to do the usual leaving of a message on the answerphone, waiting for a response, not getting a response, writing a stinking complaint letter and sending it off.
In my stinking letter I explained that not only was I having this appointment canceled, but in fact when I looked back at my diary it seemed that I had actually only seen the n.p., in April 2008. This is someone I am supposed to see every six months, interspersed with six-monthly consultant appointments so that I see a ‘rheumatology health professional’ every three months.
So … if I didn’t get to see her until March 2010, that would be a gap of just under two years in what is supposed to be a six-monthly appointment schedule!
I also pointed out that NICE guidelines state that a patient whose RA is not under control should be seen monthly. I didn’t hold out much hope for that argument, and I was right – ‘Well they are only guidelines, and we have to do what we can, but …’ but hey, when NICE are on your side you’ve got make the most of it! It doesn’t happen often!
Aaaaaanyway … the rather lovely PaLS lady (who turned out to be an RA patient herself) sent my letter to the RA manager, the nurse practitioner etc. and got a response back for me within 48 hours, and phoned me for a chat. She agreed with me that saying ‘your health professional is on annual leave’ when in fact what had happened was that yes, she was on annual leave but they’d also had one nurse leave suddenly and another drastically reduce her hours (and that from a group that was only four-strong in the first place), did nothing to endear them to their patients.
She explained that if I had a serious problem I could contact the helpline. I explained (again – it was in my letter) that actually things were pretty good at the moment, BUT the registrar I saw in June said that I should see someone in three months (i.e. September) to see if I needed to up my methotrexate if it was working. Now I wouldn’t see anyone until December (my consultant appointment) and I didn’t think that was good enough. Then she said that she thought the nurse p. could probably actually sort that out over the phone and up the MTX after talking to me if she thought that was the right thing to do.
Now that would suit me just fine – getting it all sorted over the phone without having to drag myself into Norwich and waste an afternoon … so I said that was really useful to know and that I would therefore not be making an official complaint at this stage … and then we had a nice, friendly chat about RA and the local support group etc.
So it all ended very amicably and pleasantly and I went off a much happier penguin … and prepared to give ’em hell at the beginning of September when they told me that actually they couldn’t do it over the phone. Cynical? Moi?
But wait … is that the mobile I hear ringing … Yes … it’s the nurse practitioner’s secretary …
See the next thrilling installment for what happened next …