Any point in going to rheumatology appointments?
Frustrated
Member Posts: 13
I was diagnosed with psoriatic arthritis (because it wasn't symmetrical and my hands weren't affected). Now the consultant doesn't even seem to think that's necessarily right. There's not even steroid injections. My shoulders, elbows and wrists hurt - but only one wrist which is now useless as a joint has the traditional heat and swelling. No steroid injections offered. Not bad enough for methotrexate (thank god). No splint for my bad wrist though was promised (and much longed for). No appointment to meet surgeon for that wrist though I never wanted that anyway. MRI scans, x-rays and ultrasounds. Blood tests from a nurse who couldn't care less about how she stabs you and puts a foot of tape over which is almost impossible to get off afterwards. Urine samples and weight checks. Only 18 months in to be offered any pain relief other than paracetamol (I don't do pain relief - when the pain's really bad it doesn't touch it anyway with that someone's holding a hot iron on my arm for hours and when it's not bad then I don't really need it.). Point out to consultant that not being "treated" in any sense of the word and all he can think about is methotrexate which if I do have psoriatic arthritis is far from successful in a lot of cases anyway).
Is it really worth me going to these appointments at all? Surely it'd be cheaper and better for all if we just rang up for a flare-up, as I know nothing will happen until I start to lose another joint - and maybe not even then. Why be put through the pain and indignity just so they can watch my distress? Do I need an audience to my suffering they aren't going to do anything for other than expensive needless tests? I know when it's inflamed. It bloomin' well hurts. Talking would be better than testing surely???
Is it really worth me going to these appointments at all? Surely it'd be cheaper and better for all if we just rang up for a flare-up, as I know nothing will happen until I start to lose another joint - and maybe not even then. Why be put through the pain and indignity just so they can watch my distress? Do I need an audience to my suffering they aren't going to do anything for other than expensive needless tests? I know when it's inflamed. It bloomin' well hurts. Talking would be better than testing surely???
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Comments
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hi , methotrexate is a very good drug for those of us with RA & PA , been on MTX for 15 years for RA & would recommend it to anyone , the side effect are mostly controled by folic acid & now dont have any side effects from it
the point of taking & any disease-modifying anti-rheumatic drug is to stop your joints being damaged & with MTX we take a low dose compared to those treating cancer0 -
trepolpen wrote:hi , methotrexate is a very good drug
Thanks - yes. But he won't prescribe it anyway. I'm beginning to think wonder if that's a money saving measure rather than the clinical reason he claims by his reaction.0 -
It is worth going to these appointments if you need help and in my experience rheumatologists generally know their stuff. They prefer to hold back on the very serious meds unless there's a proven need for them. An auto-immune arthritis is difficult to diagnose if one does not present with exactly the right symptoms (as I know from personal experience). There are a fair few kinds and attaching a label is not actually that important because the meds are the same. You say you're not bad enough for meth so maybe you could be thanking your lucky stars? You name it I've tried it (apart from hydroxy) but, unluckily for me it all came far too late to make any real difference. (My troubles began in April 1997 and I was given my first med, sulphasalazine, in February 2002. I'm still taking it. )
Stronger pain relief has to be asked for because it's unlikely to be offered, but then as you 'don't do' pain relief then you would appear to be stymied. If paracetamol is not enough for the times that you need it then ask for the next level up. Bear in mind, however, that the stronger the duller the more you are taken away from the pain, not vice versa. I take between four and six 30/500 cocodamols per day (they come in other strengths too); I do have stronger meds available for when needed but then I cannot function that well (I am rather partial to being able to function). If you ask then ye shall receive and you will have another option for the harder days.
You sound very angry about all this which, quite frankly, won't help you or those with whom you come into contact. Eighteen months is not that long to get used to depredations of arthritis, especially if you have been blessed with good health before this started. Luckily for me I've never enjoyed that so in my case it's just more of the same.
I've spent a trying day in hospital so I'm off. I wish you well and I hope that things improve for you soon. DDHave you got the despatches? No, I always walk like this. Eddie Braben0 -
I can understand why you feel frustrated. It's a difficult system. It is a slow system and then when you finally get an appointment afterwards you can sometimes feel a bit let down or after a time think of ways the person didn't fully address your situation. There seems to always be a lot going on behind the scenes with doctors and consultants as they have a set of guidelines and constraints with money and licensing. They tend to try moderate courses of treatment and slowly build up. As DD said, they're not going to give you the strong stuff if there's a less strong drug which will do the trick. One of the their biggest sources of information has to come from you, when you meet the doctors you have to make sure they're getting a good overview and highlight the very worst days, pain levels, how it effects your life etc. If things have changed since you last met then they have no way of knowing that unless you leave a message or make a fuss with your GP.
Yes you can cancel your appointments or refuse treatment but I really think that this is counter productive. If you need a splint you need to find the person who can give it to you and insist, you can bring in an information leaflet that backs up your claim you need to. It might be that its a GP that does that, I don't know, you can also always go to a different GP. I asked for a physiotherapist - one GP said no, they didn't have the facilities and then I went to a second GP who passed the referal. The consultants tend to just focus on trying to sort out the right drugs. You can also consider changing consultants, some hospitals are simply just a lot worse than others. And some consultants and GPs are just worse than others. But maybe you should really research the normal plotted course of your disease and the specific treatment course, options and rules. If you know what a consultants restrictions are then you can demand things which appropriate. They are meant to take your wishes into account.
The other thing is that it seems like you are reluctant to receive certain medications without having tried them, why is this? For instance there are a range of drugs simply in terms of pain relief that range from dulling the pain a little to knocking you out, and your needs will fit somewhere on the scale. There are a range of other services that are available, often through the GP, one of which can be a counselor to discuss some of the issue that arise, it is free and and if it really isn't for you then you can just go for one of two meetings and ask to stop.
Its tiring, its frustrating and your life becomes remarkably different....
I find the best way to get off the tape on your arm is to keep wetting the bit you're about to peel so it becomes wet and so can no longer stick to the skin /hair. :P
DD: owch..... 5 years before receiving any treatment is quite the ordeal0 -
Of course you should go for your appointments, if your not happy with the consultant your seeing then ask to see another one. But keep going the consultant might be holding off on giving you certain medication but I'm sure if you tell him all your worries and how bad the pain is he might try you on certain painkillers. It took me 10yrs of seeing different consultants and trying different medications and people changing their minds on what was actually wrong with me! So don't give up yet.0
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