12 replies to this topic

[Sloater]

Hi everyone, I am back.  after three years on Sprycel and minimal complications I woke one morning to swollen eyes.  It happened for 3 weeks and I went to an allergy doctor thinking I have developed a new allergy...  well after multiple blood tests, I have learned what I knew before.  I am not allergic to anything in the general categories...  well now where do you think my mind is going......  Have I developed Lupus, or some other immune system deficiency?  Just took another blood test and should know in a couple days.  Have an appointment with my Onc on May 7th.  Sent him an email and he has not responded, but just maybe it is nothing.  The doctor also said it may me an allergy they have not identified (yea, like CML bubba...).  I am sure it is probably something related to an allergy, but not convinced.  It started after I returned from California for a week.  Maybe I caught some Hollywood disease while out there and am growing another head or something.  :-)  Oh well.  Has anyone had similar side effects every morning?  Wake up with your eyes so swollen you have to pry the lids apart to see.  Ice is my new best friend every morning.  One more thing, when the doctor put me on Steroids it went away until they wore off, he now gave me a two week supply to keep the swelling under control until we figure this thing out...   What a bummer.  Any advice would be greatly appreciated...  Trey if your still out there you may have read something related to this.  I am sure Phill will have a nice comeback on my California comments...  I am assuming the gang is still out here...   Take care all,

What is, is.

Sloater....

[Lizzybee]

I am on Tasigna and having issues with my eyes being swollen and dry, plus my vision is blurry.  I am planning to see my eye doctor in the next couple of weeks.  It seems like eye problems and vision changes are pretty common side effects based on the number of conversations about it here.

[kellbell]

I have had puffy eyelids that comes and goes since before dx. That was one of the reasons why I kept going to the Dr. I was also checked for allergies, went to the eye Dr. for dry eyes and blurry vision also ( they told me it's called getting old ) I'm only 36!  I was dx two months ago and have been on sprycel since.  I still get the puffy eyelids for a day or two and then it goes away for weeks.  I just thought it was swelling and try not to eat salty foods.

[Sloater]

Thanks for responding Lizzybee and KellBell, were your eyes swollen shut, or just puffy?  Maybe it will go away like KellBell indicates.  I will keep my fingers crossed...

[kellbell]

My eyelids looked puffy. They were swollen, I think. What is the difference? They were'nt swollen shut, but my eyes wouldn't open all the way like they normally do. It looked awful.

[Trey]

Probably should wait a couple weeks to see if things normalize.  If so, then it would be some transient issue.  If it remains, that would be worthy of more discussion. 

[Happycat]

Is the swelling asymmetrically distributed, or fairly even for both eyes?  I have had asymmetrical swelling, so one eye was much worse, could basically see my eye bags puffing out under my eye. Noticed it was worse when I slept in on weekends, and slept mainly on one side. Seems all the fluid collected in the closer to the ground. Now I make an effort to move around as I sleep, and it's not as bad.

Puffy eyes often indicate a dust allergy, but I assume you've done the skin prick test to rule that out. Dust allergies are worse in the heating season, so you could try changing your filters in the furnace. (That always helps me.).  Also wash your pillow in super hot water. If its dust mites, that should get rid of them.

One other question re allergies. You say you had blood tests for allergies. Do you mean just blood tests, or did you do skin prick tests?  The blood tests are not always reliable, can give false positives or false negatives. My dd had blood tests for food allergies just for a quick screen, but they are making us do scratch tests on the skin because it's just more reliable.

Traci

[Pin]

Just wondering if you have been feeling unwell lately? I had horrendously swollen eyes when I had glandular fever ("mono") - I doubt it's something like this, it would show up in your blood test if it was.

Anyway, congrats on your latest PCRU, great news!

[Sloater]

Pin, Unfortunately I have been feeling very good lately.  I think HappyCat is right on target.  I do have a very young Allergy doctor, so maybe he is not recommending the skin prick test yet.  Maybe he can milk my insurance company for a few thousand more before he does and look like a hero later.  Surely doctors don't do this....   I will try the filter change and washing the pillow, if it goes away I will send my co-pay to Happycat... 

[Sloater]

yes gravity affects the side that swells....  bottom is always worse...  good call....

[ChrisC]

A couple of years ago, while on Sprycel, I had a few bouts, over a period of six months, of swollen eyes that each lasted several days. It eventually became evident to me that the common trigger was that I'd chopped up a jalapeño pepper when preparing dinner the evening prior to each morning's "Surprise! Your eyes are almost swollen shut!" During food preparation I had always washed my hands thoroughly, I thought, and there'd been no pain at the time to indicate that I'd transferred anything from the pepper to my eyes. Perhaps some trigger has also caused your eyes to swell? Good luck with finding it!

ChrisC

[BethG]

So sorry to hear you are having to deal with this! I hope you are able to get to the bottom of it and I hope it is something as "simple" as allergies and not a new, "improved" side effect.

BethG

[hannibellemo]

That's why I sleep on a wedge. No swollen eyes and no stuffy sinuses in the morning. Sloater, it wouldn't surprise me a bit if this was an adverse reaction from Sprycel. It would appear one is never safe from them. I developed a pleural effusion 2.5 years in. Never a problem with fluid retention, it appears to be an immune mediated inflammatory response.

Hope your eyes clear up soon! Good to hear from you.

Pat