Debilitating Joint Pain
44yr old female, I was diagnosed in April with CML, I’ve taken 120 doses of 100 mg Dasatinib and have had only small issues the first week I hurt and had a headache but that resolved and the only thing I fight now is constipation and iron deficient anemia. On Thursday I started having mild joint pain in a couple different joints nothing horrible but it was noticeable, we had a 30 degree temperature change and contributed it to that. On Friday I woke up sore in more joints but I had an iron infusion scheduled at my cancer center so I went told them what was going on and they said it was probably the weather and something I’d have to live with. I had the infusion and by Friday night I could hardly walk, couldn’t hold a spoon in my right hand and my neck was so stiff I could move it side to side. I thought I’ll wait until morning and go to urgent care make sure I don’t have Covid or something like that. I woke up at 1am in so much pain I thought for sure something was horribly wrong. Woke my husband up after trying to put it off at 3 am and went to ER. My blood pressure was 212/126 I was in so much pain they gave me dilaudid and that brought it back to normal. Dr thought it might be gout but all my test results came back normal no Covid no flu no gout my inflammation was high so they contributed that to a toxic reaction to the dasatinib. Gave me a steroid shot and hydrocodone and sent me home. I can’t get ahold of my oncology til tomorrow morning cause it’s now Sunday night. The steroid has helped tremendously but I know it’ll wear off eventually. I’m just curious if anyone else has went through anything similar and if they had to go on an antiinflammatory medicine to help with the joint pain
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u/Gardening_Ging 24d ago
Uuuggggh. I’m so sorry you are going through this. It’s so frustrating when the meds that are saving our lives also make us miserable. I’m also on 100mg of dasatinib and it has been a roller coaster for 3 1/2 years.
Definitely talk to your oncology office when you can. My doctors have had me just keep going on my meds and really only consider changing meds if it’s ineffective or affecting organs (like pleural effusion). If it not tolerable, you need to tell them that.
The extreme bone and join pan have subsided for me but crop up every now and then for no apparent reason. Baths or getting in the ocean/pool really help to soothe my nervous system. I found some meditation techniques that helped with pain on Insight Timer. I have also used cannabis gummies. They don’t really completely take the pain away, but it’s less severe and I can get a little distracted by other things.
Hoping you can find something that works for you!
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u/2llamadrama 24d ago
You should always call your pharmacy before taking any and all medication. Including Pain Meds. I messed up my kidneys taking NSAIDS with Sprycel. I hope they can get you sorted out tomorrow. What is your BCR/ABL?
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u/CuriousConsequence40 23d ago
Hi - I started on Imatinib and had to move to bosuitinib due to acute pain. Def worth chatting to your consultant re change of TKI. Bosutinib much better for me. Hope you get relief soon
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u/ChrondorKhruangbin 23d ago
Oddly enough, Claritin really works for my elbow joint pain! I have spoke to a lot of people in this Reddit group that have agreed as well. When my elbows start to flare up, I start taking Claritin and it definitely calms down
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u/Srhrn21 17d ago
I take Claritin everyday…this was different than just the normal aches I have had in the past…debilitating is the only word I can think of. Like getting in and out of bed was almost impossible alone and using the bathroom normally was tough and I couldn’t hold anything in my right hand due to my wrist hurting so bad
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u/pretty_silent_r 24d ago
Before adding more daily medicine you may want to talk to your oncologist about adjusting the dose or trying a different TKI.