I am currently in the process of being diagnosed with SLE- I have been told that I also have Mixed Connective Tissue Disorder?? Must admit I am a little confused and overwhelmed by it all, although it is really GOOD to now have some answers as to why I had felt soooo tired, achy, feverish, had swollen joints and why some days I was unable to walk. I became too embarrassed to tell people I was aching (didn't want to moan too much) and made so many different excuses as to why I was limping. Was discharged from hospital last week as I also have fluid on my lung from the inflammation....so much was drained it frightened me, there's some still there so on steroids at the moment. On Hydroxychloroquine 2x daily although may change to Azathioprine? Anyone have any info or experience of taking this? Currently off work, no idea when is the best time to return, any advice?....I am so scared of feeling the way I had done prior to going into hospital, some 12 hour days are usual for me?
It is good to see this site and to also hear other's views as prior to one month ago I had never heard of Lupus!
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Nell28
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Hi I was diagnosed with Connective Tissue Lupus 3 years ago. take tablets and in general keep good health. I had 2 years ago a very bad chest infection that I could not shift. I have just had a short stay in hospital with tight chest, thought it was a clot, thankfully not. I look well most of the time, I don't like moaning its just not me. The Lupus seems to have affected my Kidneys although all the hospital visits I go to it was my own doctor last week who said that I have stage 3 Kidney disease. Got quite a shock. He has suggested that I slow down a little. I work full time in a school. Just wonder whats in front.. take care.
I seem to be more confused now, a month down the line than I was when I was told. I read all he information given to me and the stay in hospital gave me time to reflect, but think its only now it's all sinking in....keep finding myself almost resenting it and thinking 'this time last year I was doing...' My chest is still sore, all the medication frightens me, esp as I even hated taking paracetamol previously. I have amazing family and friends who are very understanding although its good to now talk to other people in the same position as myself! I am due to get married next year so fingers crossed there is some stability for then!!
Hey Nell, everything you are feeling right now is directly due to Lupus. You will be feeling, confused, feel in denial, scared and a whole range of mixed emotions that you just cannot explain, especially being quite depressed. when i was diagnosed at 18, i couldn't quite seem to grasp exactly what this meant for me and who i was. i remember thinking to myself, every minute of every day ' Imagine you have just been told you have a life threatening illness' like i was asking myself the question and then realizing, wait, i do. It felt like my body was no longer my own and i had absolutely no control. It felt like the whole world had came crashing down and i didn't know where to turn. yes i had my family, my mum and my then boyfriend but it felt like i was screaming inside at them to understand but they couldn't fully as it wasn't them.i became very depressed and sort of went inside myself. i started behaving very erratically, going out drinking and burning the candle at both ends. Like if i did that then i was denying that it was me, i was 'normal' like everyone else. Please know that you are not alone, there is a long journey and trials and tribulations, ups and downs ahead, these will make you stronger and you will be happy. Id like to mention to you that i have a page on Facebook, its called Crystal Chrysalis, if you are on Facebook, please look it up, i think it may help too. Invite to everyone else too =] X X X
i was on azithiaprine..but will say i had bad reaction to it (my bone marrow stopped working)..have been on most of the heavier drugs over the past 14 years..cyclosporin, then tacrolimus, and even tried methotrexate for 10 months (which i will add mad me feel nauseous for 5 days out of 7) now on mycophenolate and had 2 doses of rituximab..as well as hydroxychloraquine and prednisilone 15mg ...good luck with whatever treatments you try, and dont be afraid to ask questions (either on here or with your specialist) and if u ever need to chat, feel free
Thank you for the advice Mary and Purple Princess...doc has said that I would have weekly blood tests to monitor new med to see my reaction to it. Really pleased to have found this site, everyone else you tell seems to say 'what's Lupus?!' I know there is a long way to go but feeling positive that it will all settle down...thank you again and take care!
no worries...i am here anytime you need to chat..and its funny you should mention no one knowing anything about it, as its actually more common that you think..its just not very well heard of
Hi Nell, I was on Azathioiprine, didn't have any side effects but unfortunately just didn't work for me so onto the next!
I'd say definately don't over do it and go back to work until you feel ready to. I used to work 12 hour days, it's a hell of a long time! Have you tried explaining to you're employer what you're going through and concerns?
Really helps to have support in this area, I'm lucky my manager understands and is willing to work round my illness. Infact he was the one who actually said it would be a good idea to start writing a blog so in a way kind of got him to thank for me finding this site!
I hope you will soon be well, not only can you talk on this site but you can also talk on the telephone to any Lupus contact in you area,as some times its nice to hear a voice
I'm on my third week of Azathiaprine and so far the blood tests have proved positive, no bone marrow or kidney issues. It's early days though as it takes 6 weeks to start working so I'm on prednisalone for 6 weeks to bridge the gap. Really hoping the Azathiaprine works. Let me know how you get on, we can compare side affects!!
What you are feeling is completely normal .... it is a relief to get an answer and once you get the answer, you have so much to take in, then you reflect back thinking "is this all that my life will be now?" you are grieving, but take heart ..... it does get better, you have an illness which can be managed and a positive mental attitude will help in that management. Yes it sucks!! but you can either dwell on what was and lose today, or grit your teeth and be determined to make the most of it. If I have a bad day, I tell myself well only a few more hours and it will be tomorrow and that might be a better day. I have been on all the drugs some with success some not so successful, but I have decided to live my life as best I can. No 2 people suffer in the same way and although we may have common features, each person is different. Share your pain, share your moods, share your thoughts, your fears .......... sharing them, gets them out of your head. God Bless
I was diagnosed exactly year ago. Since then I had 6 pulses of cyclophosphamide. Still on pred. Started on 40 mg per day. Now I'm on 10mg. Since august I'm on azathioprine 100mg. As my kidneys have been affected I'm loosing plenty of protein with my urine. Today I had an app. Doctor said that my lupus is active but not much. Kidney's functions are good. But I have bad liver's funct-104. They took plenty of my blood and now I'm waiting for results. Hopefully it's nothing serious.xxx
I was diagnosed about 18 months ago and having had a massive flair up it was the steroids that got it under control, my consultant then introduced the long term treatment slowly- I take 2mg predisolone daily, 400mg hydroxychloroquine daily, 300mg ranitidine daily, 150mg azathioprine daily, 2 adcal chewables and 10mg amitriptyline! I can't tell you I have any reall side effects- it's hard to pick apart the lupus from the poss. side effects really. What I can tell you is that I am pain free. Hoping to lose the steroids soon! Don't know how this will change with time but it works for me. I had signs of kidney involvement but the azathioprine has knocked that on the head for now. I am very lucky I have a fab consultant who really listens and my GP is great too. This really helps. My biggest struggle now is having to make some decisions about work- I just can't go on the way I have been and am currently off sick.
I got diagnosed with SLE in 1996. Been on prednisone non stop for 14 years. Say no to prednisone if you can . I'm in hospital right now fur to fractures of my t-12 and three other due to prednisone . I took azathiaprine for three years snd just started up again for shrinking lung diagnosis. I only notice a worse brain fog taking it. I have taken cytoxan many times and it's way worse. Good luck
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I'm newly diagnosed and I'm scared :-(
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