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Life With Lupus

How long did it take for your flare up?

Hello all. I wanted to find out your thoughts on what could have caused this major flare up I am having. I have had Lupus/R.A./Sjogrens 5 years and have had 2 flare ups in these years, but it’s been a while. I have been managing it all with MTX, prednisone, nortriptelene, gabapentin, a little bit of norco and xanax and for the most part feel okay to get through my day to day.

Still in denial at times and while trying to maintain the lifestyle I had before, I push myself and often don’t know how to say no to friends n family. Last weekend (Saturday), I went on a boating trip and also went paddle boarding. It was great fun in the SUN! And the sun is no joke right now in sunny Southern California. I was mostly covered, wore 50spf sunscreen and a big hat so I thought I’d be ok. Come Thursday, all the symptoms of a major flare started. Saturday, bedridden and in tears most of the day, I finally dragged myself into urgent care for help. I’m hoping I feel better soon, got a steroid infection and Tylenol 3.

My question to all of you is, could it take that long after being in the sun and pushing myself physically for this to happen? I’ve read that most flares start right away after physical events or sun. How long does it take for you to flare after being in the sun or pushing yourself?

It’s hard to know if it was this trip that caused this or elevated stress from work (which has been on going). Help me understand friends?

Thanks in advance for all your input :slight_smile:

Diane

Hi Diane,
So sorry for your flare. Yes, it could take a week, because in that week, things are starting to swell inside, and it may take a week before you feel the full effect of the swelling and inflammation. I feel mine the day after I overdo, but sometimes it has been a few more days than that. Once it did take a week, and I had diarrhea for a year! I have very few remissions. The stress from work can sure be an added problem that could make you worse. Get out some ice packs for sore joints.
Best wishes,
Sheila

Thanks so much for your reply Sheila, this puts my mind at ease, I felt like I was going crazy wondering. This helps so much, I now know what not to do and will pay close attention to my limits instead of ignoring them. I hope your remissions are more and more and that you are feeling better everyday :heart:

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Hello. So after reading your story it sounds like it was your enemy the sun plus whatever you did leading up your to your trip. I’ve had lupus now for 8 years been through many flares and many days in bed just crying asking why me. What I have learned is to listen to your body if it says I don’t want to play then listen to it if not you will have many more days like that. Even though you have the highest spf you still have to limit your time outside

@Jerry_Dilworth Thanks for your response Jerry. It was hard to believe i could flare so many days later but it does make sense. Honestly, I was at the beach 3 weekends in a row and know I shouldn’t do that. I hope you’re doing okay. Hugs.

From my own experiences over the last 19 years having lupus and associated autoimmune diseases, too much of anything that’s physical or emotional can cause a “flare.” I don’t like using the word “flare” because it’s relative. My immune system is kept at bay by tons of drugs and treatments. Above and beyond this, I can still succumb to exhaustion or a headache or an infection or increased pain or emotional stress or muscle spasms or constipation or a sore stomach from so many drugs . . .

Haven’t had a fully functional day for 15 years. For me it’s always something. Moral of my story is do what you need to do to keep yourself as healthy and functional as possible and as it’s been so eloquently put, “listen to your body.”

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And I totally agree with you on that and if your fam or friends haven’t learned by now then they haven’t been listening or just don’t care so when your body don’t wanna play you just disregard their feeling and worry about you cause at the end of the day they are not in your shoes

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my flare up take three days to come up and it last 3 weeks to go a way. I flare up a lot in the winter because the weather and in the summer when its really humid.