flippin criteria

[_andy_]

anyone else been sent by your rheumy for a assessment to be started on the anti tnf treatment ,, only to be told on your first assessment you fail the criteria.... sorry .... " aaarrrggghhh " .. this is whats just happen to a friend of mine ... needless to say he feels abit let down ..

[helixhelix]

So far I've failed to get through even the first stage to get to being assessed so I don't think it's that unusual. Because my blood results are stable (and always have been) I can never make a DAS of over 5.3 even with 10 joints that are tender and 10 that are swollen, plus my feet which don't count. It is deeply irritating that the way it's calculated doesn't suit all the different variations of RA, even if it does save loads of money. Polly

[Tillytop]

I'm so sorry for your friend Andy - it must be devastating for him and no wonder he felt let down. I know these drugs are very expensive and the various assessment criteria are intended to be a "fair" way to make an objective assessment of our disease activity but I really don't think they take full account of the impact that active RA has on our lives. As Polly says, you can "fail" the assessment even with multiple affected joints if your blood results don't "fit" the criteria. When anti-tnfs first became available on the NHS, a good number of years ago now, there was no formal assessment process and I remember having to be assessed by two different consultants who had to make independent recommendation about whether I could have the drug, so I was really "at the mercy" of their opinions. I was lucky enought be be approved though, and I am very thankful for that. I'm sure that those who made the current guidelines probably believe that the assessment process is fair and objective but I agree with Polly that they take little account of the variations of RA and, as such, are not always effective (except probably in terms of saving money - and even that is, in my view questionable if they were to take into account the cost of treating someone with uncontrolled RA in the longer term). Sorry, rant over. I really hope your friend is able to have a second assessment in due course.

Tilly x

[_andy_]

im sure your right ladies ... it s all down to cost ... i think why he feels let down is because after his meeting with rheumy nurse ,, she more or less told him ,everything would be fine with his assessments ,,then went onto telling him , all about the treatment and how it will really works for others .. really built his hopes up i guess ..

i also heard about how blood tests ,,dont always give a true reading of someones condition .. im sure all rheumys know this too ...this i think is abit unfair when the results are taken into account on someones assessment ... i guess alot of this is taken out of our rheumys hands and im sure its very frustrating for them too ...

andy .x

[Tillytop]

Hello again Andy

I feel so sorry for your friend. I think it's very unfair of the nurse to have got his hopes up and it's no wonder he feels so let down. I also feel cross when I hear that rheumatology nurses and consultants lead someone to believe that a drug WILL work for them when, as we all discover in due course, nobody can say which drugs will work for us and for how long. I'm lucky in that my rheumatologists have always been open with me so I have never had my expectations unrealistically raised. As for blood tests - they are a complete mystery to me (despite having RA for 17 years)! My inflammatory markers have sometimes been hardly raised at all at times when I am literally seized from top to toe - and sometimes relatively high when things are "ok". I remember being called by the hospital one day with a prescription for steroids to help with what they percieved as a significant flare - and I don't think they believed me when I said I was actually doing better than I had been! I know from reading other posts that I am not alone in this.

Tillyx