Tags: Actemra, anti-TNF, arthritis, National Institute for Clinical Excellence, NICE, RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, RoActemra, Roche, tocilizumab
NICE have rejected yet another R.A. drug – this time for ‘moderate to severe R.A.’ It’s RoActemra (tocilizumab), known as Actemra in the U.S. apparently.
OK, so right now this isn’t a huge personal concern for me – apart from the ‘scrofulous pustule’ and other minor unpleasant side effects, the methotrexate is doing its job; but it’s a huge concern for R.A. patients in the U.K. in general, and potentially also for me personally in the future.
Here’s a link to an article about it, as there’s no point in me saying everything that’s already been said … and that I’ve already said about other drugs on this blog! In brief, and I quote: “the Committee has concluded that, at an approximate cost of £9,295 a year for a patient weighing approximately 70 kg, the therapy is just too expensive for use on the NHS and would not represent a cost-effective use of resources.”
I’d better start losing weight now, as if I ever need anti-TNFs in future NICE will probably decide it’s too expensive to fund overweight patients, as underweight patients need less drug! Well I suppose if NICE are inadvertently making me lose weight, that’s one positive benefit of them!
Tags: arthritis, RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA)
I took over TWO HUNDRED photos of Barcelona, but obviously I can’t put them all up here, so you’ll just have to take my word for it – it was fabulous!
I haven’t got any pictures of me ‘speaking to camera’ on Tuesday morning – this may well be a good thing! It will be interesting to see if they use any of my soundbites on the My Day for RA site … when they get round to updating it. Then I had the rest of the day entirely free until the evening event. Here’s just a couple more pictures to whet your appetite if you’re thinking of visiting!
And so to the big event … not my sort of thing really, and it did go ON, but quite fun all in all!
And so to bed. Luckily I don’t have any photos of me rowing with the airport officials the next day; sadly I also don’t have any photos of the fabulous flight over the Pyrenees, or the glorious sunset that greeted me when I finally arrived home in Norfolk … or the lovely hubby that also greeted me … so … that’s all folks!
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 …
Tags: fatigue, fibromyalgia, Loudon Wainright II, RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness
I love the song Dreaming by Loudon Wainright III, although he must have written in it one of his more depressed moments and it usually makes me cry, but I realise that I definitely can’t agree with the sentiments (which is no bad thing!), and in particular the last verse, so here’s his last verse and my fibromyalgia and RA-induced response!
Given that last night I dreamed I was a vampire with amnesia who had no idea why a friend of mine had vanished, because I’d forgotten I’d had her for breakfast, you can see why I’d rather have a good bit of deep sleep!!
Part of Dreaming by Loudon Wainright III
I’d rather be dreaming than sleeping
Just sleeping you’re just as well dead
In dreams I can fly
In dreams I don’t die
That’s why I lie here in this bed
Just sleeping you’re just as well dead
Sleeping by Pollyanna Penguin I
I’d rather be sleeping than dreaming
I think about dreaming with dread
In sleep I can heal
In sleep I can’t feel
That’s why I lie here in this bed
No sleep and you’re just as well dead
Tags: 5 HTP, aches, aerobic exercise, amitriptyline, arthritis, consultant, deep sleep, exercise, fatigue, fibromyalgia, griffonia simplicifolia, lack of sleep, methotrexate, NHS, pain, RA, REM sleep, rest, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness, weight gain
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!
Tags: arthritis, medicine, RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, steroid
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!
Tags: Add new tag, appetite loss, arthritis, hospital, losing weight, methotrexate, NHS, rheumatoid, rheumatoid arthritis (RA), rheumatology, rheumy nurse, rhuematology nurse practitioner, slim, weight loss
But before I tell you why I’m glad I have to tell you about my slightly hysterical Rheumatology Nurse Practitioner (aka rheumy nurse) appointment. Although I had pretty much read everything there is to know about methotrexate for the lay-penguin, the good, the bad and the ugly, and although the consultant had already said I should go on to methotrexate, before I started it I had to make a separate appointment to see the rheumy nurse, so she could ‘give me the methotrexate chat’. And give me the methotrexate chat she did!
To be fair to her she was quite human to start with, apologising for the whole mix-up with the early arthritis clinic etc. (Not that she admitted any liability of course – just apologising ‘on behalf of the whole hospital’.) Then she launched into ‘the chat’. Well, she was so heavily on autopilot that she actually repeated an entire paragraph, word for word, and didn’t even know she’d done it! But then she topped it all with the most patronising comment I’ve ever heard.
She explained that you had to take methotrexate on one day of the week, the whole weekly dose in one fell swoop, and that you then took folic acid a few days latter. The killer comment was, ‘It’s very easy to remember. You take m-m-m-methotrexate on a M-M-M-M-Monday, and f-f-folic acid on a F-F-F-F-Friday.’ I was too gobsmacked to come out with a sharp comment like ‘Blimey – what do you do if you have a patient with a stutter?’ or ‘P-p-patronise me again and I may have to h-h-hit you,’ which was rather a shame.
Anyway, the good news is that I’ve been on the m-m-methotrexate now for about six weeks and although I’m certainly not on top of the world I do, on most days, feel a lot better than I did. And an added bonus is that although it’s not making me feel nauseous (most of the time) it IS putting me off my food – which is great as I’d like to lose about two stone … I’ve lost 9lb in the last three or four weeks, and although I know I have to be careful to eat a balanced diet and I know it’s not healthy or sustainalbe to lose weight TOO fast, I’m still rather chuffed. (I know that appetite loss can be a real problem with methotrexate for slim people, but it won’t be a problem with me for quite some time!)
Tags: arthritis, car, operation, RA, rheumatoid, Rheumatoid arthritis, weather
Things have been jut a tad hectic lately. My mum went in for a planned operation at the beginning of the month. We agreed that I’d stay with her for a night or two when she came out of hospital, and then she should be OK… so she was told.
Well while she was still in hospital I went to visit her and the car broke down … in the car park but not, of course, in a space … I was reversing into a space and it died, completely, no engine, nothing. Well at least mum got a nice long visit while I waited for the RAC! They couldn’t start the car so towed it to our garage, which unfortunately is quite a way from our house, so had to get hubby to pick me up.
Our favourite mechanic fixed it … by tapping a part of it with a spanner! He did warn us that it might go again though … and of course it did. Mum was out of hospital by then, and she lives near where I work so while i was carless for a week (since more than spanner tapping was obviously required!) I was walking from her place in to work, walking back to hers at lunchtime, getting her lunch, then going back in the afternoon, walking back, getting her dinner, doing bits of housework etc. and then falling into bed. Poor hubby had to fend for himself … and fend for the cats too!
I felt completely run ragged and my knee wasn’t too happy about it either!!! Things are getting back to normal now -mum’s very much on the mend, thank goodness, and although I’m still going round (but now with a car!) to do dinners, I’m back home at night (thank goodness!) and she can manage her own lunches. In fact today she walked in to town, her first proper trip out of the house since the op. I’m really pleased for her, as it’s a big psychological step up. She’s being careful not to overdo it though, which is good.
Needless to say really, my arthritis decided to play up something awful over the whole period I was staying at mum’s! It’s now much better. I suppose it’s stress related, although weather may also play a part, as that’s been very up and down, and for much of the time I was away from home it was VERY humid.
Tags: NRAS, RA, rheumatoid, Rheumatoid arthritis
I have just joined the National Rheumatoid Arthritis Society (NRAS) and as well as a pile of interesting bumph and a very informative newsletter all about RA, they sent me a link to their web forum. It’s one of the most active forums I have ever seen (and I’ve seen plenty). It’s packed with informative posts, but reading all about other people’s experiences really put my ‘mild’ diagnosis into perspective. I’m really very grateful that I have only mild symptoms compared to some of these people, but it’s quite inspiring to see how people support each other and soldier on. Having thoroughly depressed myself reading about what might, just might be to come for me in later years, I moved on to the ‘A bit of fun’ section of the forum and laughed until I had tears in my eyes. So thank you NRAS for a thoroughly informative, useful and entertaining forum!