No rheumy apt after all :-(

Mat48

Hi - feeling a bit fed up. I live on an island where services are limited and there are two rheumies who take turns to visit every 2 months from the big mainland hospital. I don't expect that much really but after my diagnosis of sero-neg RA back in November he said he'd see me again in March and review my progress.

So here's the thing - I phoned the hospital yesterday wondering when in March he was coming and was told I won't be seeing him this time because there's a backlog of people from January who are further up the list than me.

I will probably be seen by a different rheumy in a few months time but if not I should ask my GP to write to him and find out what the situation is. I was feeling reasonably philosophical about this while I was feeling the MTX was working at 15mgs but am now starting to feel all the old aches and pains returning. Will see my GP on Monday after the latest blood test results but not sure what to say. Should I push to be bumped up the list even though I would feel bad pushing ahead of people who were in worse state than me - undiagnosed, newly referred etc when I'm at least on a DMARD? Shall I just ask him to write and find out what happens if the disease seems not yet to be under control? I feel fine until I don't with my RA and it's too early for me to know what pain is RA and what's just aches and pains unless it's acute pain which it only has been a couple of times. There are no rheumy nurses or experts where I live so I just have to rely on my GP for advice and as way of communicating with the consultant.

This has made me feel really vulnerable suddenly but perhaps I'm just stressing myself out over nothing really? your suggestions/ advice would be most welcome.

stickywicket

I guess this is a downside of island life, Mat. It's to your credit that you are considering others who may be in more need than you yourself.

T here is no doubt that arthritis thrives on stress and, if you are feeling stressed, it will not be good for you. It's a pity that you seem to be at the is it/isn't it holding the disease right now. More certainty,one way or the other might help you with your decision.

When the rheumatologists do come, do they bring a nurse who could administer steroid jabs? I just wondered if that might be an option if your blood results aren't brilliant.

I think, in your place, I'd just see what the GP has to say and/or offer. You could ask him what happens if you get worse between now & your next rheumatology appointment. Do they have any procedures in place? could you be referred to the mainland? I always stress less if I have a Plan B in place.

Mat48

Yes I think you are right Stickywicket about trying to keep stress levels to a minimum. I know this is a short coming of the place I live and I've lived here for 24 years now so I've had time to move but of course we don't do things in anticipation of chronic conditions such as RA. I can imagine that some of the new referrals will be people who have retired up here and have expectations that the level of service they have received elsewhere should be maintained - but I've been here since I was a young woman and don't expect too much.

And no they don't bring rheumy nurses up with them they just ask the normal hospital nurses to do basic blood tests and x-rays and the head physio sits in on the consultation. There is a tele-med service (video link) but I find the prospect of that a little worrying for one who doesn't have much to show for herself - I'd rather my joints were actually felt and assessed by the expert.

My fingers started to drift a little after a flare a month ago and my ESR taken a few weeks ago was 40. I had to request that my GP took it as they aren't taken routinely after diagnosis and I get no other health checks re BP or heart or anything unless I push/ request them which of course I don't because it makes me feel like a hypo! I did have some liver function problems so had to come down a few doses of the MTX but now have just gone back up to the max dose my rheumy stated in his letter - 15mgs - don't know about bloods yet as they aren't taken until Monday.

I am aware that the most effective treatment (NICE guidlines) is to put people with RA on combination of therapies rather than just one dmard but it doesn't look like that's about to happen for me anytime soon. So I just need to think carefully about what to request of my GP when I see him on Monday.

But will try not to feel unduly panic stricken and deserted by these medics because, until a couple of days ago, I had been feeling a lot more positive - wrists working better etc but now my shoulders, feet and ankles are all aching a bit and my fingers and knuckles are swollen and sore again so not so great really and a cloud of depression has been on me all day. But there again i could be stressing myself into this state of course as you rightly point out! Thanks anyway. Mat x

barbara12

Hi Mat
SW has said it really, I couldn't have put it better, I really would have a plan B..so make sure you see your GP and explain your worries, I just want to add my support and please let us know how you get on.

Mat48

Yes thanks Barbara and SW I'm really grateful to you for confirming what I thought I should do - but wasn't entirely certain about. As I've already said those ten minutes usually rush past and I want to be sure to use them wisely. It's hard when you are expecting to see the person who gave you a diagnosis and instructed methotrexate and find that you are not going to see them again for possibly another 4 months. I know there are many harder things to bear in life though and will let you know what the GP says. Mat xx

stickywicket

If it's any consolation, Mat, I've never had my BP or heart checked except when in hospital or, in the case of BP, if I've ever gone to the surgery with symptoms of anything that it would help with.

I do take hydroxychloroquine with my meth and that does seem very common.

As for the tele-med thing - I'd guess it's not just a matter of them looking at your joints but of you being able to explain also how stuff is? That might be a useful back-up.

Also, if you feel stress is playing too much of a role in this, your GP could prescribe something for that.

Sorry, just random thoughts.

Mat48

Hey thanks SW - it's just that others all seem to have a rheumy nurse who keeps an eye on them and I don't have many people I can ask specifically about RA. For instance I'm full of aches and stiffness all over at the moment so feel a bit low and flu-like but this is new and hasn't been my experience of RA to date - but then I've only had it for a year.

I was also hoping the rheumy would check me over and look at my hands to see if I'm right about ulnar drift as they have changed shape a fair bit over the last few months and the pinkies stick right out and I can't bring them to other fingers fully or clench either of my hands anymore. GPs are fine but they don't really know about this stuff it seems - it's specialist area and my consultant is now not seeing me and I don't know when I'll get to see him or another one but not for a few months at least. If I was flaring up I'd just be more demanding but this low level soreness and all over ache is not enough for me to demand anything really. As long as it's not damaging my joints I'm not too bothered will just weather it. Don't really know why it's upset me so much but it does feel like I'm just being abandoned somehow? Mat x

stickywicket

Mat48 wrote:

Don't really know why it's upset me so much but it does feel like I'm just being abandoned somehow? Mat x

I think that's a good enough reason, Mat. It's scarey.

Have a Plan B in place and get your GP on board to help formulate one.

Let's know how the bloods go.

Mat48

Thanks SW I will. Mat xx

Mat48

Just to update - I had blood tests this morning (ESR and MTX liver and wbc etc) and went into see my GP an hour ago. He said that my ESR was down from 40 to 26 since I've been on the raised dose of 15mgs of MTX and all my tests results were good. I told him about rheumy not seeing me as planned and he just said that he would keep monitoring me and if things got worse he could phone the rheumy or arrange for me to have a tele-med consultation with him at my surgery. Meanwhile if I flare up again then I should take Naproxen and Tramadol or possibly have more oral steroids but he felt reasonably confident that the MTX is working at current dose for the time being anyway and that even if consultation had gone ahead this month as it should have the likelihood was that I'd have been kept on same dose of MTX - which seems to be working well for now. So I'm satisfied with that outcome and thanks to you all for advising me so well. Mat x

barbara12

Hi Mat
That is really good news, I can feel the relief in your post, and what a brilliant GP you have...now you can relax and have a good evening.
You take care.

stickywicket

I’m glad you feel it was a good appointment, Mat. So do I. You now have a Plan B in place, plus a Plan C, plus a supportive GP. All good. Now you can relax.

Mat48

Yes - you are a great bunch thanks! Mat x