It went well!!

August 17, 2009 at 4:34 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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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!)

Hospital appointment lost …

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

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

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

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