Lupus SLE

Hey, so I'm new to this /: I have Lupus SLE, I was diagnosed on the third of February this year when i was 19, ive recently turnt 20.. ever since i started taking medication for this, I feel like its gotten worse, the pain, swelling, tiredness, my blood results are bad every time, I have swelling/inflammation on my lungs and kidneys etc.. I feel terrible: ( i've explained this to my doctors/rheumatologist, they doubled my doses of steroids and sent me on my way.. I literally have no support, my family and friends don't understand, they say I'm over reacting or that its all I'm my head, its hard especially as I live alone.. I guess I'm just looking for a few friends that understand, someone to talk, i don't know what else to do :(

thanks x..

7 Replies

  • Hi Beth. I'm 27 years old and was diagnosed with SLE 7 years ago, about your age ish. The first few months are really hard, so I can sympathise. Sending hugs. I'm now on Hydroxychloroquine and Azathioprine. I'm better than I was when I was first diagnosed. Its hard for family members to understand. It will get easier for you as well as them. They are probably worried about you. There's light at the end of the tunnel. X

  • Welcome to the forum! Have no fear, you came to the right place, we all understand exactly what you're going through. Lupus is bewildering, scary, depressing to think of, frustrating, let alone painful and making us feel out of sorts.

    Treatment is trial and error, not only in respect of the medication each of us takes but also the dosage. What works for one might not work for you, so the doctor will have to monitor how you respond to each of them and increase decrease, combine, take away until you reach an acceptable level of disease control.

    I know you're still in pain, despite double dose of steroids but treatment takes time to take effect and reduce the level of lupus activity. With the right treatment the earliest you could see an improvement is 6-8 weeks and it could take up to a year to achieve some level of balance in your disease levels.

    Hang in there, though. Use this time to learn as much about lupus as you can so that you can make informed decisions about your treatment. Listen to your doctor but be alert as to what's proposed on your behalf. If you're unsure about side effects, dose, etc, speak up. If in doubt come here and ask, there's bound to be someone in similar situation who can guide you.

    It isn't nice having lupus but your life isn't over, just different. Learn to take care of your body and mind, pace yourself, try and eat nutritious food and if possible, minimise stress. Try not to get cross with your family, you'll only upset yourself more and cause your lupus to continue to attack you. This disease is difficult to understand, so let them have their own views and focus on your health and achieving that balance. When you start feeling better, then discuss it with your family. Meanwhile maybe just print stuff off Lupus UK website or other similar websites (Lupus UK plan also send you information to give to your family to read).

    Chin up - you need all your strength to recover, so try to use it wisely. Follow the treatment prescribed, make a diary of your symptoms too and discuss them with your consultant at each visit.

    Take good care of yourself.

  • Hi bethArnold, I can relate to the feelings of no support, I live alone. I don't think my friends & family have accepted the Lupus has changed me & that my aches & pains can be random. I've learned to depend on myself & 'just do what I can when I can'. The high dose steroids help inflammation for the short term but due to it's side effects, I hope you are offered an alt. Let's pray that your lungs will heal & you recover quickly!

  • Hi bethArnold,

    I'm sorry to hear that you feel so unsupported at the moment. I hope that the increase in steroids will help to alleviate some of your symptoms. Are you on any other treatment at the moment?

    I would be happy to send you one of our information packs that you could share with your friends and family. If you'd like one, just send me a private message or email with your name and address.

  • Hi I am really sorry to hear that you are suffering with SLE Lupus I have the condition also and I have been told the same has you that it is all in your head but believe me it is not if they only knew how serious the condition is and how it effects you on a daily basis then they would not be saying that it is all in your head. Just try and stay strong if you can and try and get support from your Rheumatologist because they are the best person to talk to and will understand the pain you are suffering take care:)

  • Hey, thank you to everyone that replied, really means a lot right now.. I'm going to reply to everyone in one post as I'm very tired and in pain :( I am on other medication at the moment, I take Prednisolone, Hydroxychloroquine, Lansoprazol, Adcal D3, Co-Dydramoal. I also have to wear sunscreen constantly:( its a struggle, but I guess its for my own good.. I've tried so hard to try and make my family and friends understand but its no good, they just say what they say, that it's in my head and so on.. I do eat healthy, regular exercise I also try and keep my stress levels down but its having no effect, I'm just getting weaker and worse everyday.. I've always suffered with depression and anxiety but it seems that's getting much worse too, I've explained this to my doctor and rheumatologist also.. I really do hope my lungs/kidneys get better too! I would love an information pack, would be great. Not just for my family but for myself too.. this actually means the world to me, as I don't know anyone else that suffers with SLE..

    Thanks x

  • Hi bethArnold,

    I'm 41 and was diagnosed in 2001 although recently found out I've had it since birth. I'm happy to try and answer any questions you may have. Lupus UK website has some great leaflets that are available to be downloaded. The side effects from the meds should tail off, if not get them changed. Try not to push yourself too hard, listen to your body if you need to rest and sleep do it, it's your body's way of saying you need to put the brakes on. Ask if you can have some CBT to help give you coping strategies and help you learn pacing skills. I'm doing that and it is helping no end.

    Hope you start feeling brighter soon, sending genre hugs x

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