Well that was an interesting session. I managed to contain my anger enough but made it pretty plain that I was not happy. One thing I did was to revisit my diagnosis because, over the months, many conditions have been mentioned but none conclusively.
So, first bombshell - I do NOT have RA.
I am Sero Negative and have enteropothic polyenthesitis. Since I also have psoriasis there is also the possibility that my disease is psoriatic in origin, but since I have significant Ulcerative Colitis, and the treatment of psoriatic and enteropathic polyenthesistis are almost identical, they are grouped together. I also do not have reactive arthritis or ankalysing sponoloyditis (which is a relief).
As to treatment, the problem is that when I had my last flare but one the A&E put me on high dose prednisolone (40mg) which, by the time I had my MRI (one of the golden tests for Humira) all traces of the inflamation had effectively been masked by the steroid. So Humira is out for now, regardless of the clinical instincts of the team - bloody NICE protocols.
Here's the rub. My CRP and ESR are elevated. When I had my flare last week the GP took bloods and even WITH the 45mg of prednisolone, I had a CRp in the 50's. So isn't that enough of an indicator? No because CRP is non specific. OK is it my UC (same indicator) - well no because it's under control. So what's left?
I'm also told that the level of prednisolone I was put on by A&E (40mg per day reducing by 5 mg per week) was not a dose that the rheumatologists would ever use. They would have used 7.5 mg max . That's interesting in itself because the reason I had a flare last week was because I had dropped the dose from 20 to 15 mg. which was insufficient. So I appear to have an inflammation in my sacroiliac joints that cannot be seen on MRI, cannot be treated by what rheumy's would consider normal levels of prednisolone but isn't adequate enough proof of my need for Humira.
So, what are we going to do? Well Hyrdoxychlorquine is ruled out as it is contra-indicated in patients like me; and leflunomide (sp?) is out because there is not strong enough evidence of effectiveness in the sero-negative.
That leaves Azathioprine which they are going to start me on asap (hopefully a week, maybe two) which they will titrate up for 4 weeks. Then we start to reduce my prednisolone by 2.5 mg steps per week to see if we can elimimate it.
Then I will be in one of two states. Either controlled on Azathioprine (and in that case good - all I want is an
effective treatment) or NOT in which case we look at Humira again when I am weaned off prednisolone. - oh and I will be in lots of pain because I cannot take NSAID's, and opioids are not as effective on nerve pain.
But this will take time. 2 weeks to start, 4 weeks to titrate, 16 weeks to reduce steroid. We are looking at 22 weeks - 5 months. That's on top of the 10 months since my initial diagnosis. And what does all the literature say? 'Successful outcomes depend on quick treatment.'
Here's the irony. These stupid protocols are imposed by NICE to save money. Clearly we can't have every person in the country with unresolved back pain put on treatments that cost $10K a year. But we could let the clinicians use clinical judgement. Meanwhile the contribution I was making to to the economy through my job is under threat. If, no, WHEN I go on long term sick leave the loss to the exchequer of my tax contributions will be more than the cost of the treatment. You could not make this stuff up.
So, I am about to celebrate the 5th month, since I was signed off work, with another 5 months ahead of me. Hm......................................
And that's not all.......... Am I even on the right forum?
Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
