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RescueDog
Multiple Myeloma Discussion • January 20, 2025
Experiencing Dex Rebound Pain?
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Diagnosed 2023. No SCT due to ovarian cancer reoccurrance risk (NED for ovarian Dec 2020). Maintenance of Pomalyst relapsed in 7 months. Now on cycle 23 of Kyprolis (weekly for 3 of 4 weeks), Darzalex faspro (monthly), 40mg dexamethasone (20mg on treatment day and 20mg day after). Dexamethasone is standard for most treatment protocols for MM. I saw clinical data for Kyprolis that demonstrates a significant improvement with high dose dex rather than low dose. I understand it is important. My question is do others have what seems to be steroid rebound pain? I take 20mg on Thursdays (treatment day) and another 20mg on Fridays. I feel good through the weekend. On Mondays I start feeling like I am bruised on my upper arms, around ribs, and down fronts of thighs. It hurts to drag a shirt over my back. Also the lymph nodes behind my earlobes hurt when touched. That area hurt when at the end of 3 day prednisone cycles when having chemo for ovarian cancer. This is not bone pain. Claritin does not help. The pain wasn't too bad until I took a 6 week break in November to harvest and store stem cells. Since resuming treatment, it has been more intense. I even started taking hydrocodone. Last week, that didn't even work as well for the pain. My oncologist did tell me I can take a 4mg dexamethasone since it seems to help. I am nervous about bridging until Thursday with low dose dexamethasone. I worry what it is doing to my endocrine system. Does anyone else have this reaction as the steroid wears off? I am assuming the steroid is causing it because of past experience with the prednisone. Yet I had been on prednisone for skin rashes prior to cancers and never had this. But, those times had the steroid slowly stepped down. My doctor is not concerned and seems to feel I am a fluke with this. Like I said, it wasn't so bad until resuming treatment after that break.
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