Having a flare: Im 40 years old. I was diagnosed... - LUPUS UK

LUPUS UK
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Having a flare

2sfamily
2sfamily

Im 40 years old. I was diagnosed with Lupus SLE almost a year ago. They started me on Hydroxychloriqine 200MG 2x' a day. That didn't work so I started Mycophenolate 250MG 2x's a day & Hydroxychloriqine at noon. I also have fibromyalgia & sjogrens disease. My Rumy increased my mycophenolate up to 500MG 2xs a day and I got a lump in my throat. He immediately took me completely off of mycophenolate and for a few days & I am having a flare up now. He put me on prednisone. The lump went down. He now put me back on 250 of mycophenolate 2xs a day plus prednisone for 30 days as well as Hydroxychloriqine at lunch. I'm in pain, hairs falling out, headaches and very emotional. I also have COPD and pain affects my breathing as well. Any advice? I have a husband and three kids I'm trying to seem strong but it's hard.

2 Replies
oldestnewest

Hi 2sfamily. Sorry to hear you’re suffering a flare at the moment. I was diagnosed with lupus, APS and sjorgrens 25 years ago and my experience was that it did take a while to find the right mix and doseage of drugs to get things on an even keel. But being aware of flare symptoms (as you are) and keeping visible to the rheumatology team we’re key for me. The steroids should help you get over this bump in the road but... Does your rheumatology service have a helpline or clinical nurse specialists you can contact for advice/ support? I kept going back to raise my symptoms and concerns quite actively until we found a drug regime to get things in better balance. Slowing up and resting more during a flare is also important -easier said than done I know when you have a young family, work etc. I was lucky to have a good employer prepared to let me flex my hours / breaks etc after returning to work after sick leave. The harder bit was helping my family understand I couldn’t be superwoman during flares. Lupus uk has some helpful booklets which might help you explain to others. Other ‘strategies’ I’ve found helpful are mindfulness and yoga. They don’t make the condition or symptoms go away but they have helped me manage how I respond to the pain / symptoms better. Hang on in there and hopefully knowing there are lots of us out here who understand what you’re experiencing and feeling right now helps in some small way. Xx

2sfamily
2sfamily
in reply to Pickzie

Thank you.

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