So I'm off to my 2nd consultation tomorrow and hope to get started on a DMARD. Excited to have been called this morning to be asked if I'd like to be part of a study which will involve extra blood tests. If that seems a bit odd, I'm a scientist and have generally been on the other side of clinical studies so it will be interested to see it from the patient's point of view and like the idea that I might help with some aspect of the illness.
Anyhow, I digress! At work, we don't have an OH as I'm with a small company. Can I ask the Consultant (or my GP) to refer me to OT to help with looking at aids and discuss my needs at work? I am sure that my company will provide what I need but rather than making guesses, it would be helpful to have expert advice.
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Gottarelax
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Once you are in the Rheumy Loop….your rheumy nurse will be able to answer all those questions…..GPs don’t prescribe DMards & tbh don’t usually know much about RA…..and only Consultants can prescribe Biologics…so once you are settled on a drug regime, your GP will probably be on a shared care agreement ….with your Rheumatologist prescribing the meds,& the GP signing off your prescription….. ..& maybe overseeing any necessary blood tests.It is all a bit confusing at first…but fingers crossed you get prescribed the right meds pretty soon…& start to get back on track.
I was referred by the rheumatology nurse to OT (I am sure the consultant can do it too). They guided me through what I would need to help me at work. I then told work and they bought what I needed e.g. vertical mouse, special mouse mat etc. It was all available on Amazon.
Definitely ask the consultant and/or rheumy nurse - hopefully they'll have an OT in the department, mine does.Hope that tomorrow goes well - please report back 👍
First, best of luck with your appointment tomorrow. I hope you can get started on some treatment.
Regarding your employment, I wondered if you have heard of the Access To Work scheme?.it's a Govt scheme that can provide grants for equipment etc, to help you remain in work. The Scope charity has quite a good, brief description of the scheme. To apply or get more info then look on the Gov.co.uk site.
I was referred to OT by my Rheumatology nurse when I had problems with my hands, in fact it was a specialist hand therapist I saw. I saw my local authority HU when I was first diagnosed, (ex teacher) and although I knew what I needed, it was good to have the official back up from them when it came to agreeing adjustments with the head.
Good luck with your appointment. I hope you get started on a DMARD which works well for you.
Thank you all for your helpful replies. Hopefully, as of today I’ll be ‘in the system’ with access to a Rheumy nurse and other supports. I’ll keep you posted! It’s not until later this afternoon.
So I'm now back and feel that it went quite well though still in a holding position...
Good news is that hand and feet x-rays show no damage at all. Not typical RA where given my very high CRP would expect joints to show more swelling - i.e. my hands would be blown up like a balloon. So I'm going to have an MRI scan before I prescribing specific drugs. He would be thinking undifferentiated arthritis if I was not anti-CCP seropositive so wants to get to the bottom of it. Likely that treatment will be MTX either way.
I was prescribed Prednisolone but advised to use them only if I'm not coping as it may mean that the inflammation doesn't show on the MRI. I'd rather have the correct diagnosis than jump onto a treatment so I'll see if I can wait it out. I also now have the nurse's number so can get advice as and when I need it. All in all happy that a considered approach that is being taken even though the wait is longer.
That sounds like a good consultation 😊Good news about the clear X-rays, I was the same 😅 I've found the nurse helpline invaluable so hopefully you will too.
Thank you Boxerlady. I’m interested to know what criteria was used to diagnose RA in the absence of hand and foot damage. We’re you seropositive? Also did you subsequently develop more typical symptoms? One thing I’m not clear on is whether the consultant is considering a dual diagnosis, an atypical RA diagnosis or rejecting RA. As anti CCP pos it seemed he was not discounting RA.
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