I have read some of the older posts about the topic of sprycel and edema, and even asked someone (turned out to be on Gleevec) about their swelling too. I wanted to see if this is something that would eventually go away or it is something I will have to deal with. I am sure that everyone is different, but wondered what some other's experiences were. I have been on Sprycel for about 5-6 weeks, had initial headaches, those are gone, had some aches in hands/arms, those don't happen often, but now the swelling in my lower legs/ankles is pretty bad and uncomfortable. Started Lasix today, 20 mg (although I think too low) for 3 days and then to use as needed. I do drink water and don't use alot of salt, I guess I could cut that down. I work 12 hour shifts and the other day the swelling was really bad. I did read about celery, lemon water in am and I will try those. I guess my question is did anyone have this and then went away or get better? I don't post often, but do keep up and I appreciate anyone's experiences they would be willing to share! Thanks!
Sprycel and lower leg edema
Posted 16 December 2011 - 05:53 PM
Posted 16 December 2011 - 07:33 PM
I have swelling in my ankles and hands quite frequently. So far it has not lasted for over a day or so, but I do try to keep my feet elevated in the evenings and this seems to help. I take 140 mg of Sprycel, and the swelling seems to have increased a bit as the dosage went up. Working on your feet 12 hours a day won't help your swelling, but perhaps putting them up when you can will. I am under the impression one should drink water when taking a fluid pill, I always have and no additional swelling has occurred, but we will have to look for more experienced members for official call on water/fluid retention. Hope this helps.
Posted 17 December 2011 - 02:21 AM
I have had edema, it is from gleevec but anyways couple of weeks back I was also put on 20mg of lasix. Mostly it has done good work, most of the excess fluid left in the first few days. The fluid was about 5% of my body weight so not too bad medically but I hated it. I haven't noticed any dizziness from the lasix but I have been careful to drink a lot. I also don't hold back on drinking coffee or diet cola. Obviously lasix is working when it makes you pee a lot and that can be a bugger...no so good to be in meetings etc when you really have to pee every 30 mins. For me it seems to come in between 1-4 hours after I take it but is not as predictable as I would like. If you like sleeping I wouldn't take it in the evening. I was also told to take it as needed but every time I don't take it there is a lack of "output" and I'm much more puffy the next day. My GP also said to make sure that I get enough potassium while on lasix so I eat a banana.
Hope it works for you.
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
Posted 21 December 2011 - 10:33 PM
Thanks to you both for the info, it helps a lot !
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