New Member
Posted 27 June 2012 - 09:52 PM
Hi,
I took Sprycel last night (around 12:45 a.m.). I slept okay but woke up earlier than normal. As soon as I woke up, I felt very tired with a terrible back pain I had to lay down. I sometimes couldn't sit and again had to lay down on my back. I had a low graded fever with mild headache and also felt strange in my stomach and chest (but not a chest pain).
Is there a better time of the day to take Sprycel to minimize the side effects the next day?
Thank you
Advanced Member
Posted 27 June 2012 - 10:05 PM
How long have you been taking Sprycel? It typically takes a couple of weeks for your body to adjust and for the initial side effects to go away, or at least become minimal. That said, everyone is different, so it's difficult to compare side effects. I take my dose of Sprycel (100 mg) at 7:00 p.m. and have no significant side effects. . . well, other than fatigue, which goes without saying.
Marnie
Advanced Member
Posted 27 June 2012 - 10:24 PM
I take my Sprycel between 5 and 7, for some reason I don't like taking it in the morning, nothing I can lay a finger on though. The first weeks are rough, if you read Billie's posts, she describes the side effects very well. Someone was pounding railroad spikes in her head the first several days and she couldn't get out of bed. Her description is pretty accurate for me also. It seemed I went back and forth with the neuropathy/severe headache/joint pain to have them all thrown into a hat juggled around and started all over again. I was pretty miserable those first few weeks, but I started feeling human again about 10 days into taking the Sprycel. I see Marnie covered how long you have been on Sprycel, and the fact fatigue seems to be one of the more predominate effects, even after long term treatment. I hope you feel better soon.
Pam
New Member
Posted 27 June 2012 - 11:21 PM
Marnie,
I just took my first dose last night and will take the 2nd one right after replying to you. I have international travel coming up next week (27 hours with 4 different planes) and wonder if I can ask doctor to stop taking Sprycel for one day. Maybe I need to change taking Sprycel after dinner, which is around 7 p.m. Headaches come and go, but lower back pain is terrible. I couldn't sit during the day today.
New Member
Posted 27 June 2012 - 11:31 PM
I had headaches but they come and go. Lower back pain is really bad - I couldn't sit or stand. But it could be I was very tired, too. I hope my body adjusts to the drugs in a few weeks.
Advanced Member
Posted 28 June 2012 - 12:58 AM
I am on Gleevec, so it's a bit different - but these things do take a bit to adjust to, be gentle on yourself, and know that it will get better soon.
xxx.
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
New Member
Posted 28 June 2012 - 06:32 AM
I started out taking it at 4 or 5 p.m. I didnt want to take it right before bed because I wanted to see how I felt and make sure I was ok. I felt really wierd, very heavy couldnt move very well, stomache was upset, a lot of different things, just felt real bad, very tired too. So after a couple nights I decided to just take it at 830p.m. since it made me so tired I just took it and then went to bed. I felt better eventually and now I can stay up past 830 if I want to. It doesnt have those effects on me anymore but I still have some other things now that I am trying to figure out (not too bad though) its been 5 months on sprycel. I hope you feel better.
New Member
Posted 28 June 2012 - 10:10 AM
The first week I took sprycel (in the morning), I got nausea for about 6 hours (which the time during with the drug concentration in the blood is maximum).
I then started taking it at dinner (around 8/9 p.m.) and have no side effects (it's been 9 months).
I recommend taking it at this time, during dinner. But everyone is different you will have to find the best time.
Also as others said, you usually get some side transitory side effects during the first weeks which go away quickly
Good luck!
Pierre
New Member
Posted 28 June 2012 - 03:49 PM
Thank you, Pin. I woke up felt much better today and went to run a quick errand. Then I felt tired, had a headache and nausea an hour later. It could be the heat, though. It has been very hot in Texas. I hope my body adjusts to the drugs soon. Thanks, again.
New Member
Posted 28 June 2012 - 05:08 PM
I first didn't want to take it right before bed time and had the same reason as yours. To be honest, I didn't want to take it at all (maybe I was still in denial) and kept pushing the time to take the medicine until almost the end of the day. It was very hard for me to take the first dose to begin with. Yesterday was not a good start - lower back pain, very very tired, headache, nausea, and fever - you name it. But today I feel much better - only mild headache and nausea - and it comes and goes. Hopefully, the side effects are less and less going forward.
New Member
Posted 28 June 2012 - 05:10 PM
Thank you for your suggestions. Taking the drugs during dinner seems to work with several people. You're right that everyone is different. Like I responded earlier, I've already felt much better today.
Advanced Member
Posted 28 June 2012 - 05:15 PM
Super99. . .
When I switched from Gleevec to Sprycel, I first took a 5-day drug break to clear the Gleevec out of my system. Then I took half dose (50mg) of Sprycel for the first 5 days or so days before going to full dose. I had heard about the horrific headaches that come with starting Sprycel, so I suggested to my doc that I start out on half dose. I think it helped me a lot, as my headaches were minimal. They lasted for about 2 weeks and I haven't had one since. Hang in there. Your initial side-effects will diminish with time.
Marnie
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