Thanks for all your comments on other threads...
I have put this here as the other posts were in unrelated sections of the forum.
After a couple of complaints ,, i had a further consultant appt yesterday.. and this time he did the consultation fully and explained everything.
He actually explained , as i had suspected , that they still were not sure it was RA , hence the cessation of the MTX and Leflu. This despite a comment when diagnosed August 2010 that "there is no doubt it is RA"
I asked about anti ccp , and he stated that WEST Kent PCT does not use it due to cost.
I stated that i had contacted NRAS who were very surprised at the cessation , especially without explanation , to which he replied , ignore them they are only a social group [some further education needed there me thinks ].
I replied , " the only information i have received from you is an MTX leaflet and it is impossible to contact either yourself or the nurse". No reply to that one.
After actually asking me' for a change, he wrote out a prescription for MTX ramping up to 20 mg and also Hydroxychloroquinine , however on me advising him that i had hand and lower spine MRI's next week , WE decided to put it on hold [note the use of the word we!]. Due to severe daily disabling headaches and neck pain i have also been booked in for a MRI of my neck.
If MRI's show synovitis or other damage by RA then we will hit it with the above cocktail . If not then some less toxic drug .
I expressed concerns that i wouldn't get results of MRI until an appointment 6 months in the future , and he made a follow up there and then for 14th November [i will believe it when it comes in writing].
So all is up in the air again , however at least i am being listened to and things are explained . Care plan ???? what is a care plan ..lol
It was a good consultation despite the fact i feel i am back to where i was two years ago , at least things are being explained and i am fully informed .. Can't ask for more than that .. [other than an ant-ccp test]
On the anti CCP test ... West Kent PCT do not use it across the board due to economic issues , and the Royal College of Physicians report in 2009 [forms basis of NICE guidelines) appears to recommend it but consider the costs.
I am wondering , since anti ccp is a more RA specific test , and considering the cost involved in getting me to this point[and with further MRI's just to get a diagnosis] that maybe in my case anti-ccp would have been a cost effective option [apparently it costs about double that of RA Factor test.]
Anyway , depite all that is the most productive session i have had there :)
From RCP report on RA for NICE guidelines.....
Quote:Although anti-CCP antibodies are more specific than rheumatoid factor, this difference is not
great, and sensitivities seem very similar. Recommendations on anti-CCP also need to be
informed by health economic analysis to determine whether the extra cost and increased
specificity render this test cost-effective (please refer to section 4.2.7 and 4.2.8), either for all early
inflammatory arthritis, or for sub-groups (eg RA suspected, but rheumatoid factor negative).
Rheumatoid factor remains a relatively cheap and useful test in undifferentiated synovitis that is
helpful both diagnostically and prognostically.
After much deliberation, it was decided that x-rays of the hands and feet in early synovitis are
worthwhile, because although this is a blunt instrument in detecting joint inflammation, there are
occasions when erosive damage will be detected when all other tests are normal, and it also acts
as a readily accessible base-line for future determinations of disease progression. As ultrasound
and small joint MRI become more widely available, the long-term significance of some of the
early inflammatory and erosive changes that have been described using these imaging modalities
should become apparent and they may replace x-rays.
Full document
CG79 Full DocumentI feel a letter to the PCT coming on ;) hehe
Rich :)
"The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
