Pollyanna Penguin’s RA Blog
This is a blog about me, my recently diagnosed rheumatoid arthritis and my struggles to stay positive about it!Archive for rheumatology
Physiotherapy – what’s it all about?
Wren posted a comment asking about physio and I thought it might get a bit long-winded for a comment answer, so I’m making a post out of it!
This was Wren’s comment – sorry Wren, just realised that this answer is going to come a bit too late for your appointment! “On another subject: How often do you see your physio (physical therapist)? What do you do at the appointments? Are there special exercises? I’m curious because I keep reading of others having PTs they go to frequently, but this is something that I’ve never done, or even had suggested by my doc. I’m seeing him on Saturday morning, and I plan to ask about it, but in the meantime, how does this work for you?”
I personally see my physio every two weeks at the moment, but that’s a timing that we decided between us and it’s changed over the months I’ve been seeing her. I started seeing her weekly when things were really bad and we’ve moved on to two weekly. We tried three-weekly but that didn’t work out – by the time I saw her after three weeks my shoulders were in agony!
There are indeed special exercises, but again they’re entirely individual to each patient. I think it’s fair to say that generally you don’t do any exercises during a flare, reduced exercises during a “fizzle” (if you have fizzles, as I do!) and you try really hard to do them when things are fine, but frequently forget! Luckily I have a very understanding physio (this is afterall the woman who recommended a year’s supply of cake, but she says I’m not allowed to post that story!!) and she appreciates that it’s hard to remember to do the exercises when things are good!
What we do at the appointments is 1) Talk through how I’ve been over the last couple of weeks since I’ve seen her 2) Decide what needs doing this time 3) Do it. Usually, what needs doing is either ultrasound on my knee(s) or ultrasound on my neck and shoulder(s) or both. Again, I’m lucky to have such a flexible and understanding physio. By the time I got to see her, I’d been seeing another physio privately for months. Long story – see here and we’d established that ultrasound works for me. Again, it’s a very personal thing. Some people find acupuncture fantastic, especially, apparently, for knees – I don’t. Some people find ultrasound completely useless – I don’t.
If there’s a different joint giving me problems we’ll talk through that and discuss if there are any exercises that might help, or whether ultrasound, TENS etc. might help.
I have a whole selection of exercises that I should do regularly for my neck, shoulders and knee, and a bunch of others to ease morning stiffness in other parts of me. The knee, neck and shoulder exercises are more to strengthen the muscles in those parts, so that they can do a better job of supporting the joints, rather than to actually do anything to the joints themselves.
The attitude of the nurse practitioners is ‘use it or lose it’, so the consensus seems to be that the more you exercise (within limits), the better. Not being the world’s most active person the only time I’m likely to overdo those limits is when I’m having a flare (where minimal exercise is fine) or if I’m doing crochet, embroidery etc. and don’t want to stop although my hands hurt!
I hope this helps explain the whole physiotherapy/physical therapy thing a bit, but it is, I stress again, only my own very personal viewpoint, and I know that every physio is different (because I’ve seen at least five over the years) and every patient is different. I reckon if you find a physio that suits you it can only help, so why not give it a try?
NICE refuses yet another drug for R.A.
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!
Reason to be cheerful – revisited
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 …
Hospital appointment lost …
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 …
A wonderful weekend
Last weekend was almost perfect … it would have been pretty much perfect if it wasn’t for the dratted hospital … but more of that later!
On Friday I went to stay with a friend on the north Norfolk coast and in the evening we went nightjar watching … or nightjar listening at least. It really was a magical experience – imagine standing in a woodland clearing, near dark, with no one else around (except my friend of course) and hearing something like this recording on the Natural Suffolk blog. And we didn’t just hear them – we saw the male and female, and heard the male’s ‘wing clapping’ display flight. I’m not a bird watcher, even if my friend is proud to be a ‘birder’ and refutes the fact that she’s a ‘twitcher’ although that’s highly debatable, but that was just an unforgettable experience. I have dismally failed to convince either my mother or hubby about how exciting this was … I’ve probably failed to convince you too, but if you have a listen to the recording you might get some feel for what it was like!
It was slightly more successful than our afternoon jaunt to search for black darter dragonflies. Apparently they’re common’s’muck in the area we went and my friend never fails to spot them … with the exception of this time, of course. Clearly they were all shouting ‘Penguin alert, Penguin alert’ and diving for cover in the reads … that’s hubby’s theory, anyway. We still had a very enjoyable walk though, and saw many other dragonflies and damselflies and a number of other interesting things that we totally failed to identify, not helped by the fact that I’d left my camera at my friend’s house so couldn’t take pictures to identify later!
Saturday morning was a rather more successful trip to Holme Dunes, where I took some photos of six spot burnet and common blue butterfly on sea holly that I’m rather pleased with. I’ll post a couple here.
Common Blue Butterfly on Sea Holly
Six-spot Burnet moth, Holme, Norfolk
Needless to say really, having just described several walks and quite a bit of standing around, the RA is behaving itself rather well … and continues to do so. This weekend the same friend is coming here to go ‘damselfly twitching’ locally to me, where the rare Scarce Emerald Damselfly (Lestes dryas)
can be found. (Interestingly (I think) it’s common as anything in the US and is known as the common spreadwing, but here it’s really quite rare.)
Scarce Emerald Damselfly, Lestes Dryas, The Brecks, Norfolk
I know this is an RA blog and not a natural history blog, but I’m celebrating the lack of RA (and the sunshine of course) by indulging in a much more fun interest than my health! One RA related thing though – the aforementioned hospital annoyance. I got back home on Saturday evening to find a letter from them – your appointment <which had been booked since March 2009 incidentally> has been cancelled due to the fact that the health professional you were due to see will be on annual leave. It’s been moved from September 2009 to … wait for it, wait for it … March 2010!! I will be posting separately about this when I have the time! In the meantime I shall just say Grrrrrrrrrrrrrr. And bloomin’ good job the RA’s OK right now!
The Joys of Medication – copycat post!
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!
New NICE guidelines on RA
Well it seems that NICE (the ironically named and aforementioned National Institute for Clinical Excellence in the UK) have done an about face on their original ‘if you try one anti-TNF and it doesn’t work, tough. You can’t have another one, ner ner ne ner ner’. They’ve released new guidelines which are actually very positive. Of course it doesn’t mean that all rheumatology departments will agree with or follow their guidelines but I suppose it’s a start. Here are some of the positives (IMO), and it’s only a very select few that resonated with me:
- Newly diagnosed people should be offered a combination DMARD therapy straight away, including methotrexate, ideally within three months of persistent symptoms. Well I don’t think I know ANYONE in the UK that was diagnosed within three months of persistent symptoms, let alone given the combination therapy option, but I’m glad if that’s going to change.
- A level of what is acceptable disease control should be agreed with the patient in advance and worked towards. HA! I’ll believe that when I see it. The nearest we come to discussing acceptable levels is ‘Really you’re not too bad. I see much worse people in here every day.’ Well yeah, and there are people much worse off than me in Africa, and indeed round the corner, but that doesn’t mean I have to be content with my lot!
- Quoting direct from the NRAS site (www.rheumatoid.org.uk) “People with RA should have access to a multidisciplinary team (MDT); this should provide the opportunity for periodic assessments of the effect of the disease on their lives ( such as pain, fatigue, everyday activities, mobility, ability to work or take part in social or leisure activities, quality of life, mood, impact on sexual relationships) and access to a named member of the MDT (for example, the specialist nurse) who is responsible for coordinating their care.” Well yeah, I have access to a multidisciplinary team. Like any team, some are fabulous (physio that I see now, occupational therapist, even if we don’t share a sense of humour, rheumatology nurse at the GP surgery), and some aren’t. One that isn’t is the one who would no doubt be ‘coordinating my care’, gawd help me, if that happened; the RA Nurse Practitioner at the hospital. I can imagine quite vividly what her assessment would be like. She would read off a form in a board voice, ‘Are you depressed? No? Good. Do you have sex? No? Good.’ And of course what’s required is that thing they don’t have time for at hospital, a CONVERSATION!
And don’t get me started on the patient guidelines – well, if you know me you know I will no doubt get started on the patient guidelines when I have time and feel up to it, but just for now I’ll say they’re absolutely appalling, patronising, insulting …you get the idea. I asked Arthritis Care for a copy. They were wonderfully efficient and friendly and sent me a copy return post, but having received them I took one look and went straight to the NICE website to find the health care professionals’ version – THAT actually told me things. I am sorry I caused paper and Arthritis Care money to be wasted. The patient guide had lots of nice white space and simple bullet points that told me that as a patient I should definitely have the right to treatment, possibly with drugs. (OK, I exaggerate, but thin doesn’t even begin to describe the level of information!)
Here’s a a link to the patient guidelines if you want a laugh or cry. And here’s a link to the healthcare professional guidelines if you actually want some information.
I’m probably being a bit harsh, but it surely can’t be that hard to have something really, really simple with links or (see page whatever) if you want further detail, instead of assuming all patients are clueless. It’s as bad as the hospital rheumy nurse giving me the very useful methotrexate book and saying, ‘but really there’s more information here than you need’. I think I should be allowed to decide that.
I’ve started Methotrexate – and yes, I’m glad!
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!)
Glad I’ve still got the energy to kick up a bit of a fuss!
I saw my consultant for the first NHS appointment in April – having made the diagnosis he suggested I see the nurse practitioner for more information, and she referred me for an ‘early arthritis clinic’ which is a combination physiotherapy and occupational therapy clinic, the idea being that you get seen by both camps and they give you suggestions for every day living, assess your physio needs etc. Note the name ‘early arthritis’. I contacted the nurse in June to say I’d still not got an appointment – she checked up and told me they had a four-month waiting list. Hmm, I thought, so much for an early arthritis clinic! I rang her again after about 4.5 months – she told me she’d chase it up. Then I went to the Norfolk Arthritis Register meeting (which I’ll post about later) and the occupational therapy people were represented. I took my courage in both hands, went up to the OT stand and said, ‘I know this isn’t what you’re here for tonight, I’m sure you’ve been dreading someone doing this but I’VE BEEN WAITING FOR AN APPOINTMENT FOR FIVE MONTHS!’
She was very puzzled. ‘We only have a one-month waiting list’ she said. Well … that was interesting. Not that I’m pointing any fingers of course … but it does make you wonder …
She took my details and I thought that was the last I’d hear from that line of enquiry, but in the next day I go two phone calls from the hospital! The first was the rheumy nurse, apologising ‘on behalf of the whole hospital including myself’ for the complete mess they’d made of this appointment and saying that even though I’d been on the system when she checked in June, I was apparently nowhere to be seen on the system now. She said she’d re-referred me with a note saying this had been going on a while and was urgent etc.
That afternoon I got a call from the OT I’d spoken to the night before, asking me to come in later on in the same week! Amazing what a bit of kicking up a fuss can do. I shudder to think how long I’d still be waiting otherwise!
In fact when I saw my consultant he effectively gave me carte blanche to kick up a fuss if I needed to see him before the next appointment! The conversation went something like this:
Doc: Do come and see me before your next appointment if you need to.
PP: Fat chance! I tried that, but there were no appointments.
Doc: Well … reception can be a bit … you just need to phone my secretary.
PP: I did that … twice. She said there were no appointments.
Doc: Oh well! There are never any appointments!
PP: Then there’s never any point in saying I can see you before my next appointment!
Doc: Oh, you just need to kick up a bit of a fuss. We have to rely on the patient to kick up a bit of a fuss I’m afraid.
Well I’ll certainly kick up a fuss if the receptionist behaves on Monday when I go for my nurse’s appointment the way she did when I went for my OT/physio appointment … but that’s another story.
A ‘one injection’ cure for Arthritis within five years … well, let’s hope so!
Some great news was widely reported yesterday – there might be a cure for rheumatoid arthritis and it could be tested and available within five years. No disputing it, that is great news! But a word or two of caution …
Unlike a drug, this treatment involves taking cells from a patient’s immune system, altering them in the lab and injection them back in to a joint affected by rheumatoid arthritis. However, not only have there been no human trials yet, there have actually been no trials at all. The only work that’s been done so far is on the cells in the laboratory.
The announcement seems a little premature to me because they don’t even know yet whether the re-injection of the cells will cause the ‘fixed’ immune system cells to spread through the body or not.
The injection is likely to cost in the region of £25,000 according to press reports. The cynic in me wonders whether that’s why it’s being billed as a ‘one injection cure’. Because if all it did was halt the disease in one joint, and most RA patients have many joints affected, the cost would be totally prohibitive and perhaps the research would be stopped. According to the Daily Telegraph : ‘The team also hope to find out if the vaccine is effective only in the joints it is injected into, or whether the new cells spread throughout the body.’ So as yet they really have no idea whether it’s a cure or something to help one badly affected joint. And if it affects one joint for £25,000, the ‘National Institute for Clinical Excellence,’ in the UK, (who are the folks that decide whether medication is too expensive to give to patients, and who are often known as NASTY for obvious acronym reasons) certainly won’t be letting us UK folk have this on the NHS!
The BBC’s report quotes Professor Alan Silman, from the Arthritis Research Campaign, who are a charity I hold in great esteem and who are funding this research, as saying that the cells should be ‘reset’ to normal activity, rather than attacking the joints and that ‘The presumption is that they will stay this way, unless the same trigger which is thought to cause the problem in the first place is encountered again. Aye, there’s the rub!!
Not only is this currently nothing more than a presumption, but more importantly we don’t actually know what the trigger is – or I should probably say what the triggers are, as it’s thought that there are many different triggers. So let’s suppose, as has been suggested in the scientific literature, that one of the many triggers is consumption of decaffeinated coffee. If the cell ‘resetting’ is a success and NASTY decides the treatment will be made available an the NHS, then I toddle off for my injection, it works, I feel fantastic for a day or two (and that’s assuming, of course, that it doesn’t have some horrible side effects) and then I have a nice cup of decaffeinated coffee … if that’s my trigger, Wham – flare up – back to square one? I don’t know, but maybe. There isn’t even a comprehensive list of known triggers, so it’s not possible to even avoid them after the injection!
Then there’s the side effect thing – this is, like the current DMARDS and anti-TNFs, something that affects the immune system, stopping it from attacking the joints in error. Again according to the Telegraph article, and they may have got the wrong end of the stick slightly, or I may have, and I haven’t read any scientific paper on this, ‘Using chemicals, steroids and Vitamin D, the team has devised a way to manipulate a patient’s white blood cells so they suppress, rather than activate, the immune system.’ So …where does the immune system go? Is one cured of RA but suddenly unable to leave a big plastic bubble for fear of getting a common cold and dying from it due to lack of immune system? Probably not, because it’s probably very specific cells they’re targeting, but I’d like to understand this a bit better.
Don’t get me wrong, I’m delighted that RA, and cures for it, are being thoroughly researched, and even more glad that there might be a light at the end of the tunnel. As someone said on the NRAS forum yesterday, hope is a good medicine in itself. I’d just have appreciated some slightly more balanced and less gungho reporting.
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