Very confused

Sorry in advance guys, I was diagnosed with SLE back in September, the rhumy at the time basically gave my hydroxychloroquine and told me to get on with life I would be fine. I explained I was in the second year of uni and worked full time as a waitress and he said I would be fine. Jump to early December and I was in hospital with chest pains and breathing problems, cue course of steroids, chest X-rays, CT scans and heart scans. All showed up nothing too major, or as the rhumy told me "there is nothing there so you must be okay" walked out of appointment and cried! Rang my GP (who is wonderful and listens to everything I say), she suggested a second opinion. Off to a new rhumy (fearing the worst!) pleasantly surprised as she was pleasant and listened to me. Anyway so just got back from the doctors this morning and apparently my GP thinks I has Vasculitis, the bottom of my legs and feet are swollen and covered in a wonderfully itchy, red rash which burns when touched. I have random swelling on my right hand near my little finger and my thumb, first and second finger on my left hand are swollen. Feel like crap and absolutely shattered all the time. So after putting my sick note into work (who luckily are very supportive) and a quick call to the OH (who is also wonderful) I'm sat waiting for the rhumy nurses to call and advise me or the GP what to do next. Just wondering if anyone can relate to any of this and also what you would suggest I did as all I get from the GP or rhumy is we don't know what will happen next so you need to come see us when you get weird symptoms (something I am also very bad at).

Anyway sorry for the rant, guess I just needed to get it all out!

5 Replies

  • Sorry you are having to deal with so much. Hopefully once you have a confirmed diagnosis of Vasculitis you will be treated appropriately and this will get everything under control. There is a very good Vasculitis UK HealthUnlocked community you could join as well as this Lupus one and get more specific support and advice. Best of luck. Twitchy

  • Hi there, I can relate to what you saying. I have had SLE since 2003 and was diagnosed with urticarial Vasculitis in 2012. There was nothing much that my Rhuemy did as I was already on the hydroxychloroquine 400mg and prednisolone 15mg a day. The dermatologist suggested to my rhuemy to reduce the hydroxy to 200mg. The patches on my skin and the pain scared me so much that I cried all the time. My rash was so itchy and had it behind legs, underarms, on my back thighs, under feet and on my hands. It sometimes flares up but not as much. Steroids did the trick. Hope you get the treatment to make you better. Don't despair I have been there when doctors say "its nothing to worry about, you know you have Lupus"!! and you will be in agonising pain!!

    Take care xx

  • Hi Jenjen

    Sorry to read you are having a lot of problems. Did the second Rheumy talk about Vasculitis and did she propose treatment?. I too get chest pain and have had the tests you did and they come back clear luckily. My steroid dose gets doubled which solves the pain and then I have to gradually reduce. Did the steroids work for you?. Hope so , proves first Rheumy wrong in saying it's nothing!. Hope your feeling better. X

  • Sweetheart you are entitled to such a can be very frustrating,be persisent with the clinicians concerned, awareness and understanding by patients and doctors is still very much in the minority, please be patient,tolerant and persistent to get the best help as you are the most important person in this situation...take care and be strong.

  • Thanks for all your kind words guys, Misty14 I am waiting to go back to the new rhumy as I only saw my GP yesterday, I have been given an emergency appointment for Monday afternoon, in the meantime I have been given some steroids, up to now they have always given me courses of steroids when my breathing or chest became bad then back to the hydrox, maybe this time they will put me on them permemtaly which has more issues involved but I guess I just need to see what happens, am planning a very lazy weekend so hopefully that will help!

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