I wish I could live in the dream world my consultant inhabits

December 27, 2009 at 11:03 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
Tags: , , , , , , , , , , , , , , , , , , , ,

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!

Physiotherapy – what’s it all about?

November 9, 2009 at 3:03 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
Tags: , , , , , , , , , , , , , , , , , ,

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?

Another biologic makes the grade – but will NASTY sanction it?

October 6, 2009 at 7:23 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
Tags: , , , , , , , , , , , , , ,

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.

Rheumatoid Arthritis on Women’s Hour

September 14, 2009 at 9:12 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
Tags: , , , , , , , , ,

There was a little feature about R.A. on Women’s Hour on radio 4 a couple of weeks ago. Nothing Earth shatteringly new for those in the know, but quite interesting. It was talking about trialling the use of rituximab early on in the disease, instead of doing as NICE now recommend and not letting people have it until they’ve failed three or four other biologics. It’s here.

One bit that caught my ear was this, a quote from Dr John Isaacs at Newcastle: “One thing that all rheumatologists are pleased about is that NICE are confirming what we’ve been saying for years, which is that we need to be more aggressive with this disease. So previously patients like Wendy would be seen perhaps once every three months, or once every six months, and now we’re being told that certainly in the early stages of the disease we need to see patients every month, and if treatments aren’t working then we need to be escalating treatments, changing therapies …”

Well I’m not sure how pleased the Norfolk and Norwich are about the new guidelines. “We can’t possibly manage to see people every three months. We’ll see you every six months if you’re lucky.”

These are the sorts of things a positive thinking, celebratory penguin will be trying not to say in Spain next week!

Hospital appointment lost …

August 11, 2009 at 9:01 pm | Posted in Me, rheumatoid arthritis (RA) | 3 Comments
Tags: , , , , , , , , , , , , , , , ,

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 …

Fibromyalgia AND RA … but there’s light at the end of the tunnel

June 28, 2009 at 10:00 am | Posted in rheumatoid arthritis (RA) | 3 Comments
Tags: , , , , , , , , , , , , , , , , , , , , , , , ,

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!

A real breakthrough in RA treatment? Maybe!

June 19, 2009 at 5:28 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
Tags: , , , , , , , , , ,

Could the news that rituximab (MabThera) can provide dramatically improved results in patients with early rheumatoid arthritis be a real breakthrough at last? The thing I find most encouraging about the research, carried out by Prof. Paul-Peter Tak from the University of Amsterdam, is that it’s research based on a drug that’s already out there in the market, not something we’ll have to wait ten years for approval for.

Tak (which means thank-you in Norwegian, something many of us might want to say to him if this research is taken through into treatment) showed that treating patients early with rituximab and methotrexate in combination,  can virtually stop the disease in its tracks. The 755 patient trial of recently diagnosed patients, most of whom had suffered the disease for less than a year, showed that nearly 2.5 times as many patients on the treatment went in to remission, compared with those treated with methotrexate alone.

Of course, like all RA treatments (to date, anyway) it doesn’t work for everyone, and so far the investigation has only been on recently diagnosed patients, but it certainly sounds encouraging. At the moment in the UK rituximab is only prescribed after failure of anti-TNF therapy, but NICE might actually take this option seriously as the cost of rituximab is about a quarter of an anti-TNF so it makes economic as well as medical sense to try rituximab first.

Here’s hoping NICE do something sensible for once!

Great news! NASTY are doing something NICE

November 26, 2008 at 11:59 am | Posted in rheumatoid arthritis (RA) | 1 Comment
Tags: , , , , , , , , , , ,

NRAS has just announced that NICE, the so called ‘National Institute for Health and Clinical Excellence’ and unaffectionately known as NASTY, which is in fact a national organisation for making sure expensive drugs don’t get paid for on the National Health Service, is re-opening its enquiry into whether a patient should be allowed to try another anti-TNF drug if the first fails to work.

Admittedly this is not a total reversal of their previous Final Appraisal Document, which indicated that patients should not be allowed to try another anti-TNF if the first failed, even in the face of overwhelming evidence that a) patients who ‘failed’ on one anti-TNF frequently had success with another, as these drugs are all quite differnet and work in different ways to each other and b) a patient who had failed on this last line of treatment was likely to already be suffering from severe RA (Because in this country you can’t have an anti-TNF at all on the NHS unless your RA is severe, even though evidence suggests that the earlier you treat with an anti-TNF, the more succesful you are).

The fact that NICE have ‘backed down’ to the extent of even revisiting this is great news though, and it proves that they are forced to listen when we all stand up and shout! Thanks to NRAS and all the other organisations who appealed against the Final Appraisal Document. No thanks to my MP, who did at least stir himself to write a letter to the Minister for Health but then failed to understand her response and sent me a useless letter saying something like ‘It’s OK – this hasn’t actually been decided yet’.

I’ve started Methotrexate – and yes, I’m glad!

October 30, 2008 at 9:53 pm | Posted in Me, rheumatoid arthritis (RA) | 5 Comments
Tags: , , , , , , , , , , , , ,

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!

September 14, 2008 at 8:49 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment
Tags: , , , , , , , ,

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.

« Previous Page

Blog at WordPress.com.
Entries and comments feeds.