Constant flare ups & don't know why?

Hi, I'm new here. I'm 18yrs old. I was diagnosed w. Lupus (sle) when 15. I had it under control for a couple months then I had a perocardio infusion so I had to be on a high dose of prednisone, after a year of being on a 20mg dose then off then back on a 60mg dose for a few months. That just caused more bad than good, so the high dose of prednisone cause me to have hip pain & I went to the doc.(ortho.) & they said I needed a hip replacement, so after I had one I was okay , not to painful & I didn't have a flare up. Than my second one, oh lord. It was the worst pain in my life, my doc. Made my leg a cm 1/2 longer which stretched my nerves and put pressure on my knee/shin& I was in so much pain so of course my body is gonna stress. So I was fine after the pain got better but than the third week after the surgery I started to notice my joints started to hurt which they haven't in a long time, than I started to slowing get really bad chest pain which I got hospitalized for and they couldn't find a reason. So the chest pain went away for a couple days but I notice when It would rain or about to I would get severe joint pain where I can't walk AT ALL. My chest pain would get super bad & I would feel tingling or aching all over my body. I've been having these mini flare ups every other day for almost 3 weeks. The chest pain is a sharp pain in the front left side of my chest & sometimes the back of my chest on the middle left spot. It hurts way more when I lay down or on my side & when I laugh or take deep breaths. Sometimes it just so painful where I have to sit up and stay like that and take short small breaths. I was just wondering if y'all have experienced this or know what may be causing it or know any remedies to help me. Please I'm taking plaqunil , gabepentin & Zoloft. The first one is the one I'm taking my lupus. I didn't wanna take anymore steroids. PLEASE OF ANYONE COULD HELP OR KNOW WHAT MAY BE CAUSING THIS. Thnx

2 Replies

  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    I am very sorry to read your story. You are very young to have to cope with this awful situation. My first question is to ask where you live - whether you live in the UK? Secondly, are you seeing a lupus specialist? Not all rheumatologists are expert in lupus and you need to see someone who sees and treats lupus patients at a hospital or clinic.

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

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  • Hi there,

    I'm sorry to hear you've had such a bad time of it. How long ago did you have the surgery? I'm 23 and I've had Lupus for 12 years, I was diagnosed when I was 11 and was in the last stage of kidney failure. What has your doctor said about the flare up of your symptoms? When I have had an increase in joint pain and frequent skin rashes in the past, my doctor has increased my plaquinel (Hydroxychloroquine) which helps a little bit. I get the same chest pains as you are describing and I know how uncomfortable it is :( what I do is tie a scarf around my chest tightly which eases the pain for some reason - it's worth a try! I really do wonder what your doctor has said though? From my own experience with lupus, I would say that this is a very bad flare because of the amount of stress your body has gone under from the surgery. I'm having a crappy flare at the moment and my symptoms mirror yours. However I am seeing my Dr tomorrow to change my medication to control my lupus as it's getting worse. I suggest you speak to your doctor ASAP to get a plan in place and get you on the road to recovery. My advice to you is to be persistent! Don't let your doctor make light of your problems and make sure he knows that your suffering. Please take care and know you're not alone and let me know how you get on please :) All the best and try the scarf technique! Also, ask your doctor about patches for nerve pain which you can place of your chest and down your left side which should help.

    Suzy x

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