My SLE Experience

Hi everyone! I'm new to this side.I have just been diagnosed with SLE. I am still taking 25 mg steroids per day. Actually I became ill three months ago and i had fever all time and felt so tired.Few days later it started rashes on my face and body.Then I visited to a doctor and he gave me blood test for ANA and it was Positive.My doctor has put me on prednisolone , Hydroxychloroquine and methotrexate 205 mg. Taking those i started getting well. Now I am felling much better but I know I am not cured absolutely. I am taking medicine till now. In the mean time i have come to know Lupus is not curable but controllable. My physician suggests me to learn more about Lupus and I found this site LUPUS UK. It helps me a lot. It teaches me how to fight against this disease. But unfortunately there is no one near me who is suffering SLE..So if anyone suggest me how to control this disease and What will happen next. i had scars , they are improving but my hand there are some scars which have not removed and they give me pain .I feel very pain n my left hand . sometimes it starts drizzling , sometimes i feel like energy-less just in my hand and often gives me a several pain which i can't describe even in my fingers i feel like they pinch me or biting me . i really hate this feelings and already told doctor but he is not seem very interested .but i want solution for this problem if anyone could suggest me it will be very helpful cause i don't want to live in pain all time. i want to live happily with my SLE,please anyone could suggest me anything ?

6 Replies

  • Hi ava97. reads like you're going thru a challenging time adapting to living with SLE, sadly there is no turning back once Lupus is active but there is moving forward & it can be done once you understand what triggers the symptoms. If you have a lot of stress in your life/negative people - I suggest you remove them. Other triggers could be lifestyle choices, alcohol, recreational drugs, smoking, unbalanced diet (eat more fruit/veg/flaxseed/superfoods). 25mg a day of Predisnole is very high & should only be taken as a short term solution due to risk effects like Osteoporosis, Weight gain (Diabetes risk). When I had debilatating pneumonia, I had to take 25mgs of Predisnole for 3 mths, I take 5mgs a day now which has helped to take down the intense joint pain inflammation so I can walk & use my hands. Speak with your Rheumy about when you can reduce dose. Also I live with Neuralagia (nerve pain triggered by Shingles)- I take Pregablin only when the pains intense as it knocks me out for hrs. Be conscious of what your body needs & find positive coping ways to balance your mind, body & spirit. Lupus affects individuals differently so you need to explore what works for you. From mths of illness, I had a lot of muscle waste so I started Yoga & Pilates classes which were daunting at 1st cos I didn't know what my body was capable of anymore but with time it's helped me to regain my mental/physical balance, upper body strength, muscle, meditate & build my confidence. Also walking & dancing are difficult/draining for me these days but still therapeutic when I can. Don't pressure yourself into anything. Be kind to yourself.

    Positive blessings to you x

  • Thanks for your suggestion and blessings.i try to excercise everyday nd take rest also.But everyone suggest me to control but i don't understand what i should control ?i know life is really challenging for me now but i want to live like other people .

  • I know I will never be as I once was so I've learned to adapt & look out for patterns that may trigger the various symptoms so I can take preventative measures. I can't control the health conditions I live with so I've got to the stage where I embrace them & adapt. Living with the symptoms may be new to you but you'll find out what works for you & what doesn't. SLE is a new diagnosis to you & can be daunting when you read about the possible symptoms but they can only be treated when they occur. I just try to focus on how my body feels in that moment rather than the health condition itself as SLE is incurable at present but can be dormant in the system so even tho' diagnosis is challenging, living with SLE is possible x

  • thank you.hope i will be able to manage with this incurable disease just like you.Plz pray for me.

  • You are my prayers Ava. Pls don't give up hope (esp not in the frustrating times) & always try to believe things will get better (esp in the flair up times). Do what you have to so you can cope positively. Love yourself regardless of others & be kind to yourself. Living with Lupus has been enlightening as it's taught me things about myself that I took for granted before x

  • It’s good to hear that you have found our website a useful source of information.

    Have you checked the details of our support groups to see if there is anything local where you could meet other people in the same situation?

    You can find out more about our local groups at We can provide you with the name and contact details of someone for your selected group who can have a chat with you as well. Email me directly about this if you wish at

    If there isn’t a group nearby I hope this forum will be a good way for you to connect with others. There is a ''people near me'' feature on this forum which helps you find other members of the forum who live in your area.

    If you feel like your doctor hasn’t taken your questions seriously, please don’t hesitate to ask for a second opinion and you have the right to find a more supportive medical professional. The Citizen Advice Bureau has a handy guide on the rights of patients that you might find useful .

    I was not sure if you were referring to your GP or to a consultant, but if it was your GP, remember to bring up any issue you might have at your next consultant appointment as they will have a better understanding of lupus.

    If you need more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at

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