I have lupus and I am experiencing a flare after my pregnancy 8 months ago. My consultant left and I am having issues in being seeing by a different doctor. I am thinking about flying back to my home country to see a consultant that used to look after me when I was there. He prescribed me some blood tests but I don’t know where is a good/reliable place to get them done privately in London as I doubt the gp will even consider it.
Thanks a lot
Marta
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Marta37
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Ask your GP to refer you to St Thmas' Hospital.....they have a dedicated Lupus Unit.
Maybe phone the hospital & ask for the name of one of their Lupus consultants, ..or maybe someone on this site will know who to ask for?
You could also consider changing your GP .....it sounds as if your present doctor....like many GP's...... is not very knowledgeable on Lupus so does not take it seriously.
If you are looking for somewhere to get lupus blood tests done privately in London, I think the London Lupus Centre at London Bridge Hospital would be the main clinic for this - londonlupuscentre.co.uk/
Is it necessary for you to get the tests done privately? Are you registered with an NHS GP?
Thank you very much all for your support. I am under the care of the lupus unit in London but my consultant left and they have not assigned me to a new consultant. The gp does not want to get involved unless he is told by the hospital. I never had a flare of this extent since I was diagnosed 20 years ago and although I appreciate the fact that I am not their more urgent case I am still very worried especially now that I have to look after my 8 month baby and I struggle in the morning to walk. I got in touch with my former consultant in Italy and I feel that their approach is very hands on. He said that if I feel weak, in pain and have swollen feet o should see him ASAP. He prescribed these blood tests. I am also waiting for the nurse of Guys to call me back to see if I can be seen by a consultant here in London but I thought I would also seek the Italian doctor help. I might be overreacting but I learnt to my expenses that this disease can give you very unexpected surprises so better not to waste time!
Thanks a lot again. I find this forum incredibly helpful
If you live in London and can get your GP to refer to Royal Free, their rheumatology team is brilliant and goes way beyond just fulfilling their standard obligations. I know that they will help me whenever I need it and genuinely care about getting their patients as well as we can be. It is also a very efficient up to date hospital with all the tests available. I was admitted to my local hospital and asked for some of the tests I received at Royal Free and no one even had heard of them! I was then admitted to Royal Free and was in a while so saw lots of the rheumatology team who were all brilliant and insistant that they would work to get to the bottom of what was wrong. They also have access to all the most effective treatments. My rheumy got biological therapy approved very quickly then moved forwards when I was deteriorating and I know in some hospitals it’s difficult to get.
Hope you find somewhere soon. It’s tough coping with the disease and a baby. I love that 8 month giggly, cuddly age but you’re right you don’t want to have a flare up if you can avoid it when you’ve got such a little one. I’ve been really ill this last year but my children are teenagers and 11 so it’s totalky different. It’s the first major flare where it hasn’t been stressful in terms of childcare, in fact they took on lots of my jobs including caring for me (although think they’re relieved I’m better and the fridge/ cupboards are regularly filled as that’s all that seemed to worry them - very different from a baby).
Good luck finding somewhere. The private London lupus clinic is also very good but if you’re having the tests it’s very expensive. I went there first for an initial diagnosis but then admitted I couldn’t afford the tests so the rheumatologist I saw very kindly quickly transferred me to his NHS list at Royal Free.
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