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Lupus

(6 Posts)
greengoose Thu 05-Oct-17 12:17:14

I'm looking for some advice, Ive had a fairly dire year health wise, and what felt like everlasting flu this spring finally has been put down to 'Lupus that'll be diagnosed within the next five years in all probability' by my GP. (After a lot of blood tests).
I think I've had 'pre lupus' for most of my life (I'm 44), and this was my first proper flare. My kidney function dropped to 49 egf, since back to 69. My dr doesn't feel I need referred yet. I have been back to see her this month, again feeling awful, same symptoms as spring. Really dizzy and tired to the bone. She did kidney bloods and as they were still 69, she says I just need to slow down. (I have four kids, so no hope there)!
I am due to go to Greece during half term, and I could go like this, and just be a bit useless there, but I'm really worried this might escalate. I don't know what to do and I feel like I should be seeing someone. My bps a bit high too, which it never has been before this year.
I've been thinking about referring myself to the London Lupus Clinic (I live in Devon though, so bit of a treck)! I don't know if this is hugely expensive? I feel the anxiety isn't helping the symptoms, and it's all getting a bit chicken and egg....!
Happy to add more details, but not sure what anyone might want to know.
I'm not sure what I'm asking, I think mainly, do people with untreated lupus travel? Has anyone been to the London Lupus Clinic? And some general reassurance that my life is not over and I can live with this. Please please no horror stories, I'm already scared witless! (Would be lovely to hear people have a normal life with this sometimes)!

loveyoutothemoon Thu 05-Oct-17 17:23:17

Not much advice I'm afraid, but are you sensitive to the sun? Are you sure you'll be OK going to Greece?

I've been to Thomas and Guy's in London earlier on in the year. Wasn't much help as not enough criteria to diagnose but waiting on skin biopsy results.

You need to be referred to a rheumatologist.

LivingInMidnight Thu 05-Oct-17 20:02:42

Goodness this is terrible! You should have been referred some time ago, a GP has no place trying to diagnose lupus in the first place! You need to ask for a referral to rheumatology. Is there another Dr at your practice?

I don't have lupus but spent many years being repeatedly tested by rheumatology to make sure, because that's how serious it is.

For your holiday, stay out of the sun, wear factor 50 and a big hat.

Choosegopse Thu 05-Oct-17 20:12:47

I have a friend with lupus and a normal life! She gets tired more easily than others might and she worries about her health but she still works and does what she did before. She had a major flare and tbh her life has got better since then as now she knows why she was feeling bad and takes proper treatment.

greengoose Fri 06-Oct-17 14:02:03

Thanks, sorry I've not been back, life got in the way! Have an appt for Thursday, so hopefully will get some answers, although dreading the long day on train. I just feel so lightheaded all the time, more than anything else that's the problem.
Nice to hear about your friend CHOOSE, I imagine there must be lots of people coping with this, but the cases I've read about are dire on the whole...
I will see what Thursday brings. I don't want to tell the kids I need to cancel the holiday, they have had a tough time and deserve to go, but I will if I have to, or the doctor advises.
And yes, my GP is rubbish, although she is the first one to do the 'right' blood test, so I'm grateful for that at least!
I'm sorry if any of you are living with this, I'm just at the beginning of making sense of it, and I'm already struggling!

LivingInMidnight Fri 06-Oct-17 17:49:12

There isn't actually a 'right' blood test for lupus, diagnosis is based on a number of different things. Sounds like your doctor hasn't given you much information.

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