Hello everyone. Wow, here I am again, with yet another dilemma. I just want to gauge peoples thoughts who have experienced being on Dasatinib or know of others with similar issue. Here is my story... As PCR was increasing up to 7.0 on one lot of 150mg Nilotinib a day due to tolerance questions from Consultant. I have been switched to 20mg Dasatinib for only 11 days. Now here's the dilemma, less than a week in I go to bed after stretching, wake up in the middle of the night with stiffness of an old man (only 35). I side flex to stretch left and right, I hear bit of cracking, not unusual for me, and climb back into bed. Next morning I wake up with a pain in the hip, like that I encountered after 7 month on Imatinib initially. That day it gradually starts to increase. I see Physio private, he said stiff facet joints, I then see GP who does a push pull, hammer over knees tests and says Ive maybe tweaked my groin and this can give varied widespread symptoms, no lasting damage, go away and see you in 2 weeks if I'm still sore. I am advised to carry on my pain killing regimen which is as follows for the pain I have had over the past 12 month... 100mg Pregabalin x 2 day Ibuprofen up to 4 x day Paracetamol as when needed. ... Now I have obviously been reading around sites that state lower back pain, side pain, joint stiffness, muscle spasms as common with Dasatinib. However I am only on 20mg and just over a week in. The pain is best described as a pain that moves from pelvis to groin, buttock, flanks, mid back, under ribs and can be in all of those places or just one at a time. I've also experienced pins and needles in my left foot, cramp in both feet and in my neck. I have posted before about pain throughout TKI treatment and CML since diagnosis. Really low now as I feel so stiff, sore and scared to move. Need to work but its getting tougher due to pain (daily) wife and young son to support and worried I am on another 4-5 month venture into the unknown and battle for help. Any thoughts would be greatly appreciated, and sorry to be a pain. Just feel more and more frustrated each day. PS, PCR increased whilst being on a treatment break for 2 month from 0.00, but was still climbing a month after resuming Nilotinib. John
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Hi John.... sorry to hear you still have such a high level of pain in spite of changing to dasatinib!
I took a quick look at the side effects of pregabalin as you had already looked at dasatinib side effects and was surprised to find a few of your side effects on the list for that drug.... its a long list but scroll down and you will find neck/back/muscle pain and reflex problems as well as pain in general, spasms of the muscles in the neck, painful limbs etc. etc.
maybe it would be an idea to try reducing the dose or stopping pregabalin for a short period if you can? That way you might get closer to actually what is the cause of this (not entirely) new set of symptoms.
see link here: http://www.nhs.uk/medicine-guides/pages/MedicineSideEffects.aspx?conditi...
Hope that is of some help...
Sandy
Hi Sandy
Many thanks for your input, I have now decreased the Pregabalin to half dose in a bid to come off to rule that out. Just strange as never had a problem before... That said I am not sure if Dasatinib and Pregabalin agree with each other, as Dasatinib is the only drug that has been introduced recently 14 days ago.
Things are getting worse to be honest. I ended up in A&E last night as woke up an hour into sleep, my arms and legs were heavy, back pain was severe and deep in lower spine, tingling right down left arm and I was shaking?... I know bizzare. Felt a bit faint earlier in the day.
This is by far the worst I have felt to date. At A&E they checked my bloods, done an X Ray on lower spine, took BP and sugar levels... Told all fine, told it can't be the treatment and is... the bone marrow proliferating and the pain would be this. Given Codeine to add to Pregabalin, Paracetamol and Ibuprofen!
As I type my left arm is propped up as it feels like it is going to go dead, my back aches deep in spine, hips ache, left hand tingling and I feel heavy.
Surely being only on 20mg of Dasatinib, it would be hard to believe could have this impact.
I still have a week to wait until I am in clinic. I am wondering if staying off the Dasatinib for 2-3 days may be the next step, but with the chopping and changing and PCR going up steadily the wife isn't too keen on the idea.
I did read this...
Leukemia Survivor (CML); I Am Dancing My Way Through: Sprycel and Musculoskeletal Pain - http://www.leukemiasurvivor.co/2013/12/sprycel-and-musculoskeletal-pain....
Basically docs just telling me to up pain releif without any strong case for one factor, my consultant is different, he is trying to get to the bottom of this but a day feels like a week awaiting clinic appointment.
As always Sandy, I appreciate your help so much. Up until 2013 and being diagnosed I never spoke to anyone about anything and now I feel like a whinging pain.
John