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LUPUS UK
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Intense nightly itching

I'm new don't know where I belong, my problem starting mid May almost every night. Middle of the night I lose 2-3 hours of sleep with intense itching scalp to legs all over welts and hives type that disappear by morning starting to be really frustrating Benadryl lotions help a little.

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Hi Paynkr,

Have you been to your doctor with this problem? Do you have a diagnosis?

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SORRY TO HEAR YOU HAVE INTENSE ITCHING. I HAVE LUPUS AND HAVE HAD THE ITCHING PROBLEM FOR 40 YEARS, HAIR LOSS IN PATCHES, SORE EYES, NIGHT SWEATS & FATIGUE. THE HAIR LOSS WAS SMALL PATCHES UNTIL 3 YEARS AGO WHEN I HAD A BAD FLAREUP AND THIS CONTINUES. I DO NOT HAVE ANSWERS FOR YOU BUT WOULD PUSH YOUR GP TO REFER YOU TO A LUPUS SPECIALIST.

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Are there any other lupas specialists apart from St Thomas's hospital

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Hi Tinathebus, yes there are other lupus specialists and specialist lupus clinics in the UK. Whereabouts in the UK are you? I can provide you with information about which specialists may be nearest to you.

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Hello Paul_Howard

I live in Blackpool, Lancashire i know i keep hearing that the obe in St Thomas's is brilliant but if there is someone closer i might be able to persuade my GP to send me as symptons seem to be going a bit mental at the moment even thought my GP does talk to me i dont think he knows very much about Lupus and my rummy just told me he only deals with pain from knees down 😲which doesnt make any sense to me.

Many thanks

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There is a specialist lupus clinic at the Manchester Royal Infirmary which is headed by Prof Ian Bruce. You could perhaps ask for a referral there?

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Thak you Paul for the reply. My GP is quite good and diespay attention when i tokd him about a luous specialist he said he woukd be very surprised if there was one seeing as its not a very common illness. He did ask me to bring his details in with me next tme. So his dept isn't just rheumatology or dermotology it is totally lupus?

By listening to everyone on this forum it doesnt sound very rare andcertainly sounds horrendous.

I just got tokd by my gp the other week that tge rhummy wrote to him and said he thought i might have fybromyalgia and restless legs (would it not have been a good idea to tell me aswell). All i git out of rhummy last time when i told him about all my aches pains and swellings was that he only deals wit the knees downwards, what a load of tosh

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Hi Tinathebus,

It isn't a separate department, it is within the rheumatology department but is a clinic for lupus patients. There are a number of rheumatologists who specialise in lupus at the Manchester Royal Infirmary and is a LUPUS UK Centre of Excellence for lupus. The head of the clinic there is Prof Ian Bruce.

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That is brilliant thank you that should be a great help to my gp ;-)

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Been reading spina bifida occulta post not had this diagnosecd but had the itching which appears to have been interactions of numerous medications so changed time of taking spreading apart and this has helped.

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