I saw Prof Dasgupta privately after being on pred for nearly 5 years and after having a big flare.
He has suggested I move to Leflunomide as they are seeing some great results.
He wrote to my GP but my GP won't prescribe this without a shared care agreement, these do not exist between the private and nhs sectors.
Has anyone else had this issue and how did you get around it.
Do they mean shared cost or information sharing?
Of course you can't be on a DMARD without what is called a shared care agreement - it is because of the class of drug that DMARDs are. It isn't just "cost", at least not in terms of how much, it is financing. It may be liability I suspect too. Everything must be paid for somewhere.
The DMARD must be initiated by a specialist consultant in the NHS system and then is prescribed and monitored by the GP.
I live in London, Dasgupta works from South end. Will never get to see him.
He is no longer working in the NHS anyway. He retired in March.
He works out of the London clinic. My private GP organised for me to see him and my neurologist wrote to him with my notes. He gave me an ultrasound and said the GCA was inactive and to try to lower the pred. He said he trusts his machine more than blood tests?? I'm a year in with this what was he thinking I'm trying to do!!! I've had 2 flares at 10mg and now on 11mg planning to to the dead slow method from now on. My neurologist said one more flare and will add azathiaprin. Dasguptin said I don't need a steroid sparing agent and gave me amitriptyline for the head pain I get which has done nothing so far. I think the head pain and sore scalp and vibrations which are worse when I get tired is the GCA under the surface. Wish I hadn't seen him as he's contradicted my neurologist opinion
This is very interesting. I saw him privately too as was led to believe he was the best. Now back to square one.
I too had ultrasound and blood tests. The scan said no CGA but CRP is high.
I too have been prescribed amitriptyline to sort out the pain gates and help with insomnia.
Been on pred for too long, hence the luflinamide but now beginning to wonder if any of them really know what is best.
They don't - because there have been no real studies done. Dasgupta did a small pilot study as a much younger doctor (30+ years ago) with leflunomide - the paper he wrote and a conversation I have had with someone who participated didn't really seem to match up! Their experience of leflunomide was unpleasant enough for them to stop taking it! The conclusion drawn from the results made it look wonderful for PMR - but a proper study has never been carried out until one was started in Holland about a year before Covid so somewhere along the line there must have been something putting people off. And recruitment for the study in Holland was badly affected by Covid so delayed. It hasn't been looked at in GCA, just anecdotal reports. As it is, some doctors like methotrexate, some like leflunomide - and each can work very well in certain patients so are worth trying - but any doctor who tells you that any of them will definitely work is skating on rather thin ice.
It depends how you define best I suppose. Without him the PMRGCAuk charity probably wouldn't exist and he does know a tremendous amount about GCA so has been an opinion leader in the UK. But time moves on - and there are a few outstanding doctors in the field who are perhaps more willing to think outside the box and also to include the patient more in the decision-making which is also crucial.
"Been on pred for too long" - what is too long? Neither PMR nor GCA go away in 2 years - whatever some doctors claim.
So why would Dasgupta prescribe it if he knows they will not monitor it?
Yes he wrote to my GP to prescribe it.
I have had a big issue with my GP who seems almost scared to take responsibility for a lot of my health issues and just says l must contact the rheumatologist which isn't always easy as he is so busy and some of the issues are quite trivial. She has also sent me to A and E twice. The rheumatologist and the clinicians at A and E where not happy about this and said it should have been dealt with in the community and not by them. When Leflunomide appeared it was as a major no go for the GP and letters had to be exchanged before it was added to my prescription list.
Your GP needs a reality check - maybe a complaint might concentrate their mind?
I have been tempted as she has upset me by saying l think we have reached the end of the road in what l can do !!!!! but l don't want to upset the practise as it's very good at giving you gp appointments and getting you hospital appointments when needed. I was talking to the GP a couple of weeks ago and she actually stood up and opened the door for me. I think that's called showing you the door your times up. It really upset me and got on my head for a couple of weeks. I need to see a GP but have been put of by the attitude.
I see a private rheumy. He gave me a private prescription for Hydroxychloroquine, which is a DMARD, and wrote to my GP to ask her to continue prescribing it. He explained that because it is an 'amber' drug it has to be prescribed initially by a consultant. My GP has continued to prescribed it, with no problems, even though it was a private referral.
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