Hi everyone, l am new here...: Hi everyone, l am... - LUPUS UK

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Hi everyone, l am new here...

dk11 profile image
dk11
4 Replies

Hi everyone, l am new attendant to Lupus UK and l salute all of you. Apologies for my English, it is not quite perfect. I was diagnosed in 2013 with mild lupus and Sjorgen syndrome at St Guy,s and Thomas Hospital in London. I was lucky to be diagnosed by one of the best specialists in Lupus Unit, Prof.Dr. Munther Khamasta. I am also struggling with ulcerative colitis from 2009. Last year in June l had been in admitted in hospital with a flare and bowel inflamatory ulceration. This year in april again in hospital after 10 months , with SLE flare which affected my eyes, left lung and right leg toes joints. I am on Prednisone scheme now, decreased at 5 mg daily. My rheumatologist in this moment in Dr. Richard Campbell. I had some blood test two weeks again and l am going to see him at follow up appointment and discuss about that. Strange thing is cryoglobulin was positive at one moments but nobody pay to much attention to this as they said sometime happen to be positive. As dr. Khamasta is in Dubai from 2014 , l got i touch with one of his team doctors Maria Cuadrado. My problem as an NHS patient is that l am entitled to be seen twice in a year at Guy's and Thomas Hospital. Unfortunately they cancelled my appointments date and delayed so l was not able to see dr. Cuadrado in time and prevent somehow my flares. So l decided to pay Bupa insurance and get faster and promptly consultation, blood test with inflamatory markers and after flare treatment. I am taking Hydroxycloroquine and Prednisone now. Dr. Campbell suggested Methotrexate for next stage. My best wishes for you and good hope. God bless you all.

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misty14 profile image
misty14

Hi dk

Welcome to the forum , hope you like reading and posting on here. It certainly helps us not feel so alone with our health problems!. You've had a lot to cope with newly diagnosed with lupus and have UC too!. That's tough as I have both too but luckily mildly!. Did U.C come before the lupus?. I hope the steroids are working for it!. Glad you were diagnosed with lupus at a good hospital and are getting the follow ups you need!. Methotrexate is a good drug for the arthritis and is well monitored for potential side effects. Should help the U. C too!. It's really tough you have both conditions, a lot to take in so be kind to yourself and keep us posted. X

whisperit profile image
whisperit

Welcome dk11,

That's a lot to cope with. Hope you will keep in touch here and add your experience to the group. x

johare profile image
johare

Hi and welcome. Its great that you were seen at Guys it is a good place to be cared for and having a positive diagnosis is scary but reassuring as you know what you are dealing with. Its a shame about you missing your slot with your regular doctor, especially when you have faith in them. The cryogobulin can be raised in these conditions especially during a flare. I two have multiple auto conditions, but the treatments are generally similar, its just a matter of working out whats causing what and keeping on top of it.

As for your English, whatever your first language is your English is brilliant!

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi Dk11,

Welcome to the LUPUS UK HealthUnlocked Community!

We offer a free information pack that contains factsheets, guides, a list of LUPUS UK contacts and helplines which you can download or request here: lupusuk.org.uk/request-info...

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