My SLE Experience

[ava97]

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 ?

[magSLE]

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

[ava97 in reply to magSLE]

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 .

[magSLE in reply to ava97]

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

[minka in reply to ava97]

Ava as above try and take as much stress out of yourself as possible I know its hard but try not to think of it eg when walking you are waiting to see where the next aching pain will come from The body is a realy funny thing and once it gets hold in you mind thinking where the next ache will come from it causes it

[ava97]

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

[magSLE in reply to ava97]

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

[Hidden]

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 lupusuk.org.uk/regional-gro.... 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 [e-mail].

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 citizensadvice.org.uk/healt... .

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 lupusuk.org.uk/request-info...

[ava97]

Sorry for late reply i was busy with my exam.Actually i live in Bangladesh nd i don't know anyone sle patient around me.so how to contact "people near me" or group in your organisation.i really don't get it.but i want to learn many things about SLE cause you know i have to live with this,i want to discuss about my symptoms or new problems what i am facing everyday.now my main problem is hairfall and i am getting fat at my face.i am getting weaight in my body also but thats ok for me but it is embrassing for me that my face looks like a moon.but i am not fatty by born in face i was ok before my disease but after taking prednisolne 25 mg per day my face geting fat.i want to look like previous so i told my doctor but he said i will get more fat after hearing this i feel like dissapointed so what i should do?for this i want to contact with people like me through the group if u could help me that will be helpful to me.

[Hidden]

Hi there,

There is a lupus organisation in Bangladesh which could be helpful for you: lupus.org.bd/

It might be a good idea for you to start a new post and ask how people manage their weight when on steroids? This will give the forum members an opportunity to share their experience with you.

I hope your exam went well!

[ava97 in reply to Hidden]

hlw Fabienne...hope u r ok...😊..i not very well..i have spread post about my problem.u have sent me a link lupus.org.bd..but that site doesn't work...I can't be able to be a member of that site..i don't know what is happening...bt I have tried almost all the time..but nothing happened..

[Paul_Howard Partner LUPUS UK in reply to ava97]

Hi ava97 ,

Fabienne is not currently in the office. Sorry that their website is not working. If you are on Facebook you could try to contact them through their page here - facebook.com/lupus.org.bd

[ava97]

Thank you for your suggestion.yeahh my exam went well cause i am active and don't feel tired.but i wonder why my doctor prescribed me 25 mg steriods, maybe that is too much right?? my doctor said he will go for 7.5 mg per day now i have to take 25 mg steriods.is this is the reason for my face fat??

[Paul_Howard Partner LUPUS UK in reply to ava97]

I'm glad to hear that your exam went well

A higher dose of steroids like that is likely to be the cause of change to your face. This is often referred to as 'moon face' by people who take steroids.

I couldn't say whether your increased dose of steroids is too much or not. Generally doctors are very reluctant to increase steroids unless they have to, because they want to avoid the side effects. If your doctor is concerned about how well your lupus is currently being controlled, or if they think you may be having a flare, then they would want to increase your steroids temporarily.

[ava97]

tMaybe.. hope so things will get better.but it makes me feel really uncomfortable when people say ava u look ugly or fatty .u don't look good.i am not so beautiful girl but i am quite cute but my face now looking like a football sometimes.i feel like to cry cause i am not so bad looking .i can manage everything ,my homework even household chores and always help my mom at kitchen.just pray everything gonnna be ok.i want to look like before.isn't it possible ??

[Paul_Howard Partner LUPUS UK in reply to ava97]

Hi ava97 ,

When your doctor is comfortable for you to carefully reduce your steroid dose, you should notice a decrease in these side effects. With regular, gentle physical activity and a healthy diet you should be able to return to your usual weight.

[ava97]

Thanks you...hope so everythings gonna be alright soon.

[minka]

AVA Make sure you are taking calcium tablet with the pred like adcal D3 bad for the bones look up on net EVEN THOUGH YOU FEEL LIKE 20 YUEARS YOUNGER ON THEM

[ava97 in reply to minka]

yes I am taking calcium tablets..bt there is muscle pain in my left leg it hurts me tht I cnt be able to walk sometimes...it pain exctly up of my knee...