Puffy eyelids from gleevec

Many of the tki s and especially Glivec/imatinib have the side effect of odema or swelling of tissues and especially around the eyes and as well the eyelids(blepharitis). Many of us will look like we have not had a good nights rest or that we have been in a boxing contest.
In addition some patients suffer from conjunctivitis with a discharge on the eyelids (or sticky eyelids) as well as eyebleeds.It is thought that in some cases long term use of imatinib can lead to optical issues within the eye so regular eye check ups might be advised such as pressure on the optic nerve.
My specialist says that it all looks worse than it really is and some of these conditions will be self limiting and eventually clear up on their own;however I have found that puffy eyes have been with since 2006 when I first started taking Glivec and it is difficult to eradicate.
Eyelid hygiene is important and some easy to use home remedies do help a little ;use some boiled sterile warm water on a piece of cotton wool and starting from the centre wipe each eyelid separately.As well apply a heat pad that has been warmed in the microwave for say 90 seconds(there are pads made of grains that absorb the heat inside the pad).If eyelids are swollen and infected the Blephasol which is a proprietary saline solution can help to reduce inflammation -available from most optomotrists/pharmacies.
I trust this helps
John

Hi
Yes interesting that a change of tki can lead to fewer side effects such as tissue odema.
However by changing over to Dasatinib one runs the risk of being the 1 in 5 that suffers from pleural effusions as a major side effect-so if this happens can you go back to imatinib 0r do then have to move on to another tki like nilotinib?One solution might be as some have found to go into Dasatinib initially on a low dose and see if that works.
Another facto r is the cost which might be relevant in those parts of the world under insurance based treatment systems where co pay is the order of the today-for instance 20% contribution of an annual cost of $50,000 for dasatinib is a $10,000.If Big Pharma hike s the annual cost up to $100,000 then it is $20,000.The price of generic imatinib has not come down as much as we expected compared to branded Glivec but is still not cheap,cheap I believe .
I think that it really depends on what so called mild side effects that you are prepared to tolerate as a condition of being able to suppress your bcr/abl score down to something less than 0.1 and away from danger areas and possible disease progression.

With long term use of imatinib I get nightime cramps in my feet and legs plus suffer from non diabetic peripheral neuropathy where the nerve endings in the feet and legs become damaged or only partially effective-some articles suggest magnesium, others a course of high dose calcium, others cherry stalks as a supplement.I have yet to find a solution.
Regards
John

Thank you all for your responses! I guess the bottom line is we are damned if we have to take meds for CML and damned if we don’t!!