Just to follow up from yesterday's postings. My GP finally managed to speak to rheumy yesterday. She says I must come off pred prior to scan ten days away now. Can take cocodamol and ibuprofen but no steroids. MRI now seems to be necessary before anyone can go back on biologics. I'm trying to find out whether this is a new regulation in Scotland and will let you all know.
This isn't good news for me or anyone else who is in a similar position. I don't like moving goalposts.
Hi Cathie
I'm so pleased to hear that your GP finally got hold of the rheumatologist. Please do keep us updated on the situation with the MRI, as if there has been a change in the guidelines it's not something we've come across. It could just be that they are using the MRI as a means for determining whether there is inflammation and that this is just their way of trying to determine whether your disease has come out of remission (if it was ever in remission that is), but if they are following a particular regulation or policy this would be useful for us to be aware of, whether local or national.
I hope the next ten days won't be too hard for you and that things start to move forward again after the MRI.
Kind regards
Victoria
(NRAS Helpline)
Hi,
I live in Scotland too , although a different health board from Cathie I believe. I did have an MRI scan as a diagnostic tool but certainly not as a qualifier for biologics. My daughter also is on biologics and did not require MRI scanning for biologics.
Hope this helps
P
Thanks. I'm trying to find out whether they're using this to ration treatment. I'm Midlothian
Thankyou Victoria. Its nice to think there is support out there somewhere.
On a brighter note (there aren't many here as the inflammation on my hands is only too evident - why they need t his technology to prove I dont know) did you hear Today this morning on R4? There was quite a long piece about the Glasgow RA centre which does complicated things to determine which medication might work. It was just before 8.
Best, Cathie
Just another thing that occurs to me - (too much thinking time on my hands). The staffing cuts - which I assume is what they are - are giving rise to a game of Chinese whispers. After my annual rheumy appointment all communication with consultant has to go through my GP. GP may understand things imperfectly and relays this to me. I'm afraid that this is what may happen with the prescribing of the meds eventually.
Chinese whispers isnt a very safe way to proceed.
To be honest, I don't know what the rules are in Scotland - they seem to change the goalposts all the time, and there are so few rheumatologists around that its really hard if not impossible to get an independent second opinion. Also, in my experience if there is a difference of opinion they tend to go with the opinion that is closest to the "you don't have anything wrong" end of the scale. I did hear that they use BMJ criteria for some rheumatology stuff that they don't have a SIGN guideline (the scottish equivalent to NICE) for.
Which area are you having MRI'd? Is here any possibility that they are trying to fit you into the axial spondylitis criteria which requires evidence of bone marrow oedema or other signs of active inflammation in the lumbar spine and sacroiliac area, rather than the RA criteria?
Hands. They're testing diagnosis of RA for which I was treated well for about 12 years on infliximab+ methotrexate. I have raised inflammatory markers they've trebled since I've been off meds and visible inflammation on knuckles and wrist. I think it's a no brainier. In the meantime there's this long wait and image moved from independent living to almost complete dependency since the beginning of the year. I'm thinking we need more lobbying for better provision eg of rheumy nurses.
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