Newly diagnosed, curious

I was diagnosed with SLE in mid-May 2012. I have suffered with terrible lesions on my upper arms, chest, and face for almost 10 years, with a diagnosis of Lupus finally being the culprit. I am curious as to how "common" my symptoms are. I also have Generalized Anxiety Disorder, and I am well aware of how stress and anxiety can increase flare-ups. What can I say to my doctor to get medications, besides the Plaquenil, to help control the nervousness, anxiety, etc. I am going to a Rheumy doctor, and my next appointment is July 25th. My main symptoms are the rashes, nervousness, anxiety, horrible night sweats, and hot flashes. Other than the Plaquenil, what medications could help decrease my symptoms? Thanks for the advice!

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  • hi, i was diagnosed in april 2010, but had had tests whilst in hospital in 2006 that were positive, but no-one followed them up!! then 2007 diagnosed with fibromyalgia, and very low white blood cells in 2009, and it was still missed, my symptoms are swelling of joints,painful joints,extreme tiredness, i get 'fibrofog', which is generalised as confusoin, lack of concentration,unable to finish sentances coz my mind goes blank,i hv times when i dont cope with any noise, when i knock into things it hurts alot, even if i just knock it gently! your rheumy will certainly put u on the right meds for you, he will also order some more indepth bloods if they hv not been done already, as far as i know yes your symptoms are usual, we are all different, i hv had lots of support in the last 2 yrs, esp from lupus uk, i think that is the website with msg board, the members on there as well as here hv had years of experience and you are not alone, which is a help in its self, you are not going mad with the things you are experiencing, hope that was of some help, but lots of people wll msg u with support to.

  • Thanks so much Nicnoo =) I am already enjoying this forum and the responses I am receiving. This diagnosis was VERY scary for me. But I am glad that it has finally been diagnosed and that treatment is underway. I know I have months before my Plaquenil will actually "show" signs of improvement. Are there any natural remedies (herbal, holistic?) that can be used to help with fatigue and this weird numbness in my left hand that can reach all the way up my arm and to the left side of my face. Never on the right side. I should probably run that by my Rheumy in July. No clue if its a symptom of SLE or not.

  • I'm familiar with the night sweats. I was getting up in the night to take a shower they were so bad, but since treatment with plaquenil they've settled down a lot. Still sweat a little in the mornings when I get up but nowhere near as bad as they were. I was diagnosed with anxiety neurosis in the 60s when I was in my teens but the possibility of SLE was never discussed, unheard of as far as I know....I hope you find plaquenil as good as its been for me...I'm a lot more relaxed than I used to be...

    I dont take much else, on ramapril for bp, pain killers for osteoarthritis and sciatic probs, amitriptyline to help with sleep and vit D supplement that was started a couple of months ago....good luck..

  • Hi,

    My heart goes out to you. I can truly state 'I know how you feel'!

    I had terrible anxiety that used to come over me in waves, almost like something really bad was happening, and then as it resolved, I would get really hot and start to sweat. Especially my forehead and lower back. It used to happen throughout the whole night and it was like torture. As soon as I fell asleep after laying there for ages trying to it would wake me. I didn't realise it was related to Lupus, and to be honest nor did the doctors. I think my GP thought I was mad.

    As it was difficult controlling my Lupus, I was put on CellCept (Mycophenolate) by the Rheumatologist, and within about 5 weeks the anxiety had completely gone and I felt re-born!

    My dermatologist told me she had never heard of symptoms like mine, and was very interested to hear how the CellCept had helped.

    So the anxiety was not a state of mind after all and it was a side effect of Lupus and I am glad to see the back of it!

    However, as they say.........'The wolf is still at the door!" and I do get the odd flare, but the anxiety has gone. I hope it stays that way.

    Perhaps CellCept would suit you too and make you feel better, and stop your anxiety. Mine never responded to anything else.

    The Rheumatologist might even suggest it when you see him/her. You have to be honest about how you feel and let them have it as it is. Write it all down before you go so you don't forget anything. If they don't think you are all that bad they most likely wont give it to you as it is a very expensive drug.

    Good luck with it all and I hope you have a good outcome and feel better soon.

    Margaret x :O)

  • *UPDATE* since posting my first entry, i have had a terrible week! I spent Monday night in the ER after breaking out in hives from head to toe! the itching has not stopped. The rash KEEPS spreading. its on my ears, bottom of my feet, palms, my trunk, my chest, under my arms, EVERYWHERE. I went to see my rheumy after the ER visit for a follow up and he immediately took me back off the Plaquenil. The ER put me on prednisone 40 mg for 5 days. and also told me to take benadryl liberally. Why am I still not having any relief from the itchy burning rash? Has anyone else experienced this due to Plaquenil? My doctor told me that it usually helps to CLEAR the rash, not make it worse... Thanks for your help! Im suffering SO bad!

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