newly diagnosed

I have suffered with a horrible skin complaint for 10 years and have seen many dermatologists, I saw a new specalist from London on Friday and he told me I had SLE and has put me on Hydroxychloroquine, 1 a day for 2 weeks then 2 a day. He said that this was a sympton of Lupus so do I have Lupus?? I have looked on the internet for information and all the symptons, I have had unusual fatigue levels for years and have periods where i have been unable to function, I have joint pains have suffered from alopecia over the years and I am currently having investigations for a unusal enzyeme in my liver! He just said ' if you have this skin complaint you have Lupus' I have to have a whole host of blood tests tomorrow and I have had an eye test which was fine. Would welcome comments, I have known for years that I did not have the energy levels of a normal woman, I am 52 by the way! thanks Carol x

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13 Replies

  • Dear ulsterchick61,

    I was diagnosed by a dermatologist as having Lupus, the rheumy I was seeing at the time just said I did not have rheumatoid arthritis but she didn't know what I did have until the dermatologist diagnosed it that is. Multitudinous blood tests followed and the rheumy came up with the confirmed diagnosis of systemic lupus. Certainly from your symptoms that you describe it would seem that lupus is correct. Please don't lose heart, I cannot promise that there is light at the end of the tunnel, or that your energy levels will return to what is accepted as 'normal'. Your blood tests may or may not confirm lupus, you may still be in the dark as far as a definite diagnosis is concerned all you can do is cope day by day. I know this is a very worrying time for you, and I do so sympathise, all I can say is keep in there girl and let us know how you are getting on. Hugs and consolations. Kath

  • Thank you Kath, I do feel better just hearing from you!! I am staying positive and going to listen to my body and rest when I need to. thanks again love carol xx

  • Hi Ulsterchick61, I too am 52, have the same symptoms and had my first diagnosis by a dermatologist after the Rheumy had ruled it out. It left me confused because I thought that surely the Rheumy would know best. But I stuck with the dermatologist who prescribed Hydroxy chloroquine sulphate and it kept my symptoms under reasonable control until I found a better Rheumy. So I think that it does not matter who diagoses it as long as the treatment works. Xx

  • thanks Margaret, it is all very confusing at the beginning as you know. I am going to go with the dermatologist, I have suffered so badly with my skin and it is so badly scared now and he says the tablets will help with that. I plan to have a long talk with him when I see him in 3 months as I think I was in shock on Friday xxx

  • Hi there, I too had a diagnosis by the dermatologist in January I was exactly the same as you confused and unsure, I was given the same meds as you and was sent to a rhuemy when I had my appointment I thought all my questions were going to be answered but no this was not the case, he said I didn't have the all the symptoms I needed to confirm lupus , i have the skin rash and the joint pain and the tiredness but he said I didn't need to see him again and just to keep seeing the dermatologist. I'm very confused now and just want to know do I or don't I have lupus, if I don't have it why the hell am I taking these meds ?????

  • hi Tina, I so agree with you and that is why I am confused, I have read on here that the meds I am on can have side effects!! I have not been referred to any other specalist but have to have the loads of blood tests done this week and they are testing for wierd things so I am assuming if something comes up then I might be referred. I am going with the diagnosis as I have been feeling so unwell for so many years it is great to be valadated at last!! I am so glad I found this site I am sure I will get lots of advice and support here. Carol xxx

  • Tina and Ulsterchick6. The specialist said the same to me too as my symptoms were confined to skin muscle and joints. After approximately 3 years of cutaneous lupus my conditionwas called just Lupus but this Christmas it became SLE. When I challenged the specialist about this he said actually it is all the same illness but the name is defined by what it affects in your body. Also it took 10 months for the Hydroxy to work on my skin but beleive me it is well worth persevering. Good luck girlsx

  • Hi ulsterchick61.

    Would you like me to send you one of our free information packs about lupus? If you would, just send me a private message or email with your name and address and I'll pop one in the post for you.

  • Thank you Paul, I have emailed you x

  • wow im carol an im 52 an have just been told I have discoid lupus same story as u carol so I truly understand my whole skin has burnt to a crisp legs arms an top of my hands an my shoulders feel like im carrying a heavy bag non stop I am taking the anti malaria drug an have shown signs of improvement :) but still not sure as to when skins calms down am I safe to go out in the sun !!

  • hello Carol how spooky that we are both carol, 52 and just been told we had Lupus, that has really helped me, I am so glad I found this site it has helped me so much, Like you I dread the summer I am one of those strange people who enjoy the winter. I love wearing coats, scarves and just blending in with everyone else. In the summer I spend all the time looking for shade!! xxx

  • Hi Margaret thanks for your post, I have read that the meds take a while to work but if it helps in the long run I guess that's all that matters isn't it, I have had the skin problems for over 10 years and totally dreaded the summer months because if the rash all over my body, I look at everyone else in the summer and think why am I the only one who can't go in the sun and enjoy it, but since joining this group I have found out that I've not been alone and have just not met like wise people. In a way I no it sounds crazy but I was relieved when the dermatologist gave my condition a name !!! I've been doing all the reading up I can about it but then felt annoyed that the rhuemy then dismissed me, hey ho onwards and upwards I'm sure I'll get the answers eventually xxxx

  • Hi, I was diagnosed with discoid lupus - which started with disc shaped sores on my skin twenty years ago as the name suggests nearly twenty years ago and has gradually escalated over the years to full blown SLE my skin got worse and worse until at one stage I looked like the whole of my skin was sheading and infected when I spent a very long time in hospital with some wonderful doctors and at last got the care and attention I needed. I ended up being almost mummified to help my skin heal and was told that ultra violet light had aggravated this! That means low energy light bulbs, florescent lighting as well as the sun! I now avoid all of these things I wrap all year round wearing gloves and scarf all year round the only part of my skin that is exposed is my face and I use at least a factor fifty sun cream on that at all times when I am outside and at work as there is florescent lighting at work. Since being on steroids, methotrexate and folic acid alond with the steroid creams when I notice any patches coming up my skin is almost clear now. I do still suffer the fatigue and pains but at least I look relatively human again.

    I hope that these points will be useful to you and help stop your skin from flaring up, good luck

    Madmagz x

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