hi. I have just had my 2nd session of Azercitidine as my ET has progressed to myleofibrosis in accelerated stage.
Has anyone on this forum experienced severe pain? Around 10 days after both sessions I have had crippling headaches and severe pain in my legs which lasts for approx 5 days. The first time I was hospitalised for 4 days. Nothing seems to relieve the pain. A pain consultant suggested it is nerve pain and is caused by the Azercitidine doing its job. The haematologist doesn’t think it is chemo related but I am not sure how much MPN experience she has. When the pain episodes are at their worst I am taking paracetamol, ibuprofen and morphine. I am also taking Pregabalin and duloxetine.
Hopefully someone out there can tell me about their side effects experience
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Hi - I’ve just finished my second round of Azacitidine. I was diagnosed with MF 18 months ago and I was taking Jakafi. Then the blasts in my blood shot up to 9 - but fortunately they weren’t in my bone marrow. The only side effect I have had is some sickness - I have anti sickness drugs and it’s just a question of juggling them - the stronger ones cause constipation. I have bruising and lumps on the injection sites. Four days ago I had my first transfusion- and I have my life back. I was so fatigued and breathless. I’m 71 and a cell stem transplant is out of the question. I’ve had no pain with this treatment. I hope they find out what is causing yours. Rosemary
Has Dr said SCT is out solely by your age? Recent practice has improved enough that (early 70's) age alone should not be a reason to fully exclude the option. But there are other considerations of course.
thanks Rosemary. I have MF with accelerated progression. I am fortunate enough to have no other health conditions so if the Azercitidine halts the progression I should be a candidate for SCT. I had bruising and lumps on the injection site too but wasn’t as bad after the second round
Azacitidine has indications for Acute Myeloid Leukemia and Myelodysplastic Syndrome. You will note that bone, muscle and joint pain are listed as potential adverse effects.
Given that you are in an accelerated stage of MF, it is particularly important that you consult with a MPN Specialist. If you are uncertain that your current hematologist has this expertise then a second opinion on your treatment would be essential. Here is a lst. mpnforum.com/list-hem./
Treatment for MF has improved greatly. There are more options now than there were just a few years ago. Wishing you success in managing the MF.
leg pain seems to be a common side effect. Unfortunately our big bones make cells. I went through a clinical trial for lymphoma and have P vera now. I always have leg/bone pain. I found two strains of cannabis that help immensely. Harlequin and Pennywise. Both high in CBD. No pharm med ever helped. I have not taken pain med in almost a year. Sorry for what you’re going through. It sucks.
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