Long and frustrating road

Well, I went to see the rheumy nurse about the disputed change in treatment for my RA. I had expected to see the consultant and then realised that was my mistake. Nice woman, I'm glad to have seen her because at least its an accessible point of contact. She took my bloods.

However, she couldnt intervene in the disagreement I have with the consultant and I'm now to get an appointment with a different one - everyone speaks very warmly of her. I'm due infliximab in a weeks time, and that has had to be cancelled. I'm in quite a good state at the moment, but I wonder how long it will take to see the new consultant and what will come of that. It feels as though there's a lot still to play for but I'm very pleased that I have the lupus diagnosis clearly ruled out. I do get the impression that this new consultant is more considered and careful - I actually caught a glimpse of her - but I'm not a patient patient.

17 Replies

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  • Oh no! more delays! Have you involved PALS in any of this (or PASS at the CAB in Scotland)? If not, then it might be worth doing, because you really don't want to have to miss a treatment when it was working well for you. I'm not sure, but I did think that infliximab might be one of the anti-tnfs that its not good to go off and on again, as you can build up antibodies to it and then react if you have to restart it. Might be worth doing some research on that, as that is another good reason not to stop taking it right now. It should also be easier to argue for the status quo on treatment (i.e. to continue as you were doing) than if you were arguing to start something new, and I'd definitely push for continuing until clear evidence is given for why you shouldn't stay on it. Thats putting the ball back in their court. Also might be worth getting your MP involved. Again, its not like you are wanting the doctors to order a new treatment for you - just to be able to continue with something that you are already taking. If the main argument for stopping was DLE, and that isn't the case, then they shouldn't have any argument left.

  • Thanks yes you're right that infliximab isnt happy to be on/off. I've missed up to a month with no ill effects - after having infections etc, but I will have to see how long I will need to wait for an appointment with the new consultant I've requested. I know she's seen my GP letter and is willing to see me - but I think wants to square things with the original consultant who isnt back from holiday yet. I'm reserving the MSP/ PALS route for the next stage. What I dont think I mentioned is that yet again the hospital hadnt seen the paperwork from Dundee proving I dont have lupus - although it seemed to be in their system. I think there's a blockage at that stage. I've learned now to get a copy of letters concerning me so I can bring them to appointments and brandish them!

    But I'm feeling down and will probably have to wait til things get back to normal next week. Hope my tai chi class later will help.

    Thanks for your kind wishes,

    Cathie

  • Sorry you are feeling down Cathie. I think it all sounds reasonably positive and I don't suppose one missed infliximab will hurt and hopefully the new rheumy, who sounds good too, will overule the last one when she sees the letter from Dundee and reads up on your RA history. It's very frustrating that they do this to you at all but hopefully now you're on the home straight and it is at least very good that the other rheumy has agreed to take you on as a patient. There is hope so please cheer up and enjoy your tai chi class. Tilda xx

  • Thankyou that's much appreciated. I think about from a raised chi, I will feel better when I have an appointment. I know I'm lucky that I have a choice of consultant. Now I also know the rheumy nurse who is a useful point of contact. But I have an achey hand which I'm sure is psychological!! I'm also having drawing withdrawal feelings, its been too long since I put pencil/brush to paper. The William Gilles exhibition at Scottish Gallery is due to start on the 5th (look at website) promises to be a quick treat. CXX

  • Hi Cathie Glad you have some good news today and hope You get your appointment very soon Take care Shirley xx

  • Cathie, it has been a real trial so far for you. Thank goodness that they have completely ruled out lupus, i know you were never convinced but that isa start. i hope you get the meds sorted out asap. Enjoy the exhibition, have you been able to still paint?

  • Thanks mads, yes I'm feeling fine, but I wonder how ill be after a few weeks without my infliximab. There have been a lot of lessons for me, but its been very disruptive. Xx

  • Hopefully will just be a short delay in the Infliximab...so get that chi going strongly to hold you over until then. I think getting to see the nurse may well prove to have been v worthwhile in the long run as they do a lot behind the scenes in keeping things going, and are generally more accessible that the Doctors (with a capital D). I agree that might be worth holding fire on major complaints for a bit, but if you don't get appointment through soon hope you start nagging to get one. Fingers crossed, but all sounds more positive thankfully. Polly

  • Thanks, prolly. I agree about the nurse, I'd felt for a long time that I didn't really have a proper connection with the hospital department, so that helps. I'm going to phone the consultants sec every morning until I get an appointment, and practice my tai chi. I found the session last night really helped me to start destressing. Planning a lunchtime visit to our local heron who lives near Arthur's seat. Hope you're well

  • heron! Grrrrr! We have one who is eating it's way through all our fish, and it sneaks in every time we turn our backs. A fish every now and then is fine, but we're not a restaurant.. I've gone off them big time! Px

  • Oh dear - this one lives high up away from peoples houses and fishes in Dunsapie Loch. But I suppose they can fly distances so might do raids on local fish ponds. They do look lovely (to me!) and we have a regular lunch treat which involves Gregg's sausage rolls and a picnic watching the seabirds , swans and heron. Calming if you arent losing fish from your pond...

  • I had one in my bathroom for a few hours a courple of years ago! Somebody shot the one that lives at our local lake (though we did not know at the time that was what was wrong with it) It was wandering sadly about for ages getting weaker and weaker and in the end I went out and caught it, wrapped it up in a sheet, put it in my backpack and took it home while I waited for the RSPCA to come and take it to a sanctuary. I left it's head sticking out of the backpack and as I walked home it kept up the eeriest, most wistful song I've ever heard. Now I can't hear about them without remembering that extraordinary sound, it seemed to be aimed from it's long beak up into the sky. It nearly made it, seemed to be getting there apparently but died after 2 weeks.

  • Oh my goodness! that sounds amazingly sad. Have you heard The Crane Wife by the Decemberists?

    All this is wonderful to help with my RA - stress levels are going down as I think of other things. Including herons and cranes. Oh goodness!

  • Hi :o) Ring her secretary and ask for the consultants email address or 'briefly' express your concerns to the secretary and ask if she would pass them on as you are understandably anxious. xxx fingers crossed.

  • Thanks

  • Oh that really is a sad but rather wonderful tale about the heron singing despite it's suffering. I walk round the shore with the dog (soon to be dogs when the weather improves) and the seal cries are really haunting - sometimes so loud and they bob up and down with dark holes for eyes so this gives my walks a whole added mythical dimension somehow. Tilda x

  • Sounds wonderful. No heron at Dunsapie but many screaming seagulls. We need to do these things to destress, and I'm sure stress is an important aspect of managing our RA.

    XXX

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