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Yes! I hope you don't ever need steroids again , but if you do let me know how it goes. During a severe flare my dr will give me a cocktail injection of kenalog, dexamethasone, and toredol. Start to get relief same day. Dex is short acting...kenalog longer (2wk) but shot only helps 2-3 days before I need another. Oral Dex daily seems to work just as good by itself, so I think out of the combo of drugs in injection, it's the one giving me the relief.
Thank for that info @A MyLupusTeam Member. That is so helpful! I will ask next time (hopefully there isn't a next time) about a different steroid. I will keep dexamethasone in mind too. Sounds like we react similarly!
Prednisone seemed to make my flares worse. I already felt like I was dying...literally could not hand one more symptom. Dexamethasone was my saving grace. Weight gain and trouble sleeping has been only side effect on it. It takes away the flare quick...start getting relief right away. I do have muscle pain going off it. Makes sense about you still flaring bad enough that perhaps the weight loss and other symptoms are stemming from the flare. Maybe your dr would be willing to let you try a different steroid?
I'm still learning this myself. What a great question. Everytime I have a severe debilitating flare (unable to shower, work, cook, etc) I start out with the same symptoms. Then I'm usually bedridden 1-2 weeks. Hard to miss that much work but if you can't get out of bed...you can't. So I'll start back on a hefty dose of steroids at the first sign of a major flare then gradually wean down. I've done this twice over the last 2 months and it's seemed to have worked. I had to miss one day (first day of a severe flare). It's so hard to guage though, sometimes before I get to that point there are other signs (swelling, more fatigue than usual, malar). And it's tough bc sometimes it manifests into something more and others I can just sleep 10 hrs and recover.
I am the same @A MyLupusTeam Member. Although both times I have had prednisone not only has it had the opposite effect on me than it has others (weight loss, sleepy, lack of appetite) but it seems to have made some symptoms worse and others better....so I am not sure it's worth it. Although sometimes I wonder if the flare is so bad I am still having symptoms above the prednisone.....and maybe that's why I still lose weight sleep and have some worse symptoms....maybe it's not enough...
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