Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> Eye swelling http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1338189933 Message started by frugalmama on 05/27/12 at 20:25:33

Title: Eye swelling
Post by frugalmama on 05/27/12 at 20:25:33

For the past month or so, I've noticed that my eyes and upper face (from about my upper lip to eyebrows) have been swelling up. I've noticed this every day, and although they start out minorly swollen in the morning (say 10%), it increases during the day (to maybe 25% bigger than normal). It's not major, but with the crazy fatigue I have, it's hard enough to keep my eyes open :). My eyes are also itchy as they swell, and I can feel the weight of my eyelids on my eyes. Anyways, the only thing that I can think of that could be causing this is the cromolyn sodium. I've started taking it a few days before this started, and it was the only change in diet/meds/environment that would have happened. I didn't notice this on the lists as a common side effect, but has anyone else experienced this as well? I'm also on Singulair, Ranitidine (2x daily), Reactine and Allegra, but have been taking all of the others for 3 months to years. Thanks!

Title: Re: Eye swelling
Post by Anaphylaxing on 05/27/12 at 21:38:51

Too bad. I haven't had that to cromolyn but if I did I would consider stopping it for a time to see what happens. Could check with your doc and see

I'd be sure to eliminate all other possibilities first. You can start reacting to a med you've been on for ages; our bodies are fun like that!

Title: Re: Eye swelling
Post by frugalmama on 05/28/12 at 04:32:03

Yes, it's so much fun, isn't it? You never quite know what to expect!!

Now since I'm still in the "is it really going to help" stage with the cromolyn, if I stopped and restarted is that like starting from scratch all over again? My understanding is that it can take 2-3 months to see full effect, and I'm only a month or so in...

Title: Re: Eye swelling
Post by iamnotalone on 05/28/12 at 04:47:47

Frugal;
I agree with Ana-ask your doc asap. Then...think,think, and rethink: was there something/anything you used/took/touched-then touched your face, etc. etc.
Mine gets "set off" like last month I took an aspirin, and that started a month of facial swelling & hives.But I was also mulling it over and came up with things that were likely keeping it going, like certain foods,cleaners,etc. The pollen here is awful too- dandelion fuzzies in the air for weeks. :(
good luck !
lori

Title: Re: Eye swelling
Post by Lisa on 05/28/12 at 07:09:30

There could be other issues going on like problems with your kidneys or something else. Have you any other edema going on or urinating more, or something of the sort? It doesn't seem like the chromolyn to me - there should be other symptoms of your rejecting the chromolyn - this doesn't sound like a typical rejection of chromolyn, so it could be a coincidence. Yet, because you've added another medication, this is what makes me wonder if this might not have something to do with your liver or your kidneys instead, which is why I think going to your doctor a very good idea. This doesn't seem like normal swelling and it doesn't seem to be typically masto related to me. But here's the trick, so very often before we can point our fingers at masto as the bad guy, we have to rule out other possibilities first. So, let's rule out the others and if everything checks out fine, then it's the masto and the chromolyn. But before you just pull off the chromolyn, presuming it as the problem, go see your doctor so you can have his/her help in figuring it out. It's safer that way.

Lisa

Title: Re: Eye swelling
Post by WendyH on 05/28/12 at 11:26:42

Frugal,

I get facial swelling, especially under my eyes near my cheekbones and my eye lids. I have SM and have found its not my meds but part of the fluid retention of we masto's. So when my face swells or my stomach bloats really bad I take Lasix which is a water pill and it goes down.

Wendy

Title: Re: Eye swelling
Post by Joan on 05/28/12 at 17:45:14

The itching might indicate that it's mast cell or allergy-related. Still, I agree that you should consult your doctor asap regarding this new symptom.

Facial swelling is a listed possible side effect of gastrocrom. The duration of the med's effects in the body is listed as 6 hours. So, you might be able to go off it for a few days and see if the symptoms disappear. If the symptoms don't go away after going off it, then the cause might be something else. If you're off the it for only a short time, it shouldn't mean you have to go back to square one. However, do check with your doctor right away about the itching and swelling and any medicine changes you're considering.

Title: Re: Eye swelling
Post by PamH on 05/29/12 at 02:39:40

Hi, just wanted to share that I have had eye swelling before I went on the Cromolyn ( I know everyone is different). I still get swollen quite often. I am trying to track down all the triggers. So far I know I swell when I wear a certain CPap head gear. When I go into public places with lots of people. Like a movie theater or a theater. Any type of moldy building will really swell my eyes and lips.
Since yours started while taking the Cromolyn I would talk to your doc./ The Cromolyn does "stir" things up!! But I consider it a life saver!

Pam

Title: Re: Eye swelling
Post by frugalmama on 05/29/12 at 08:03:46

Wow, thanks so much everyone! I'll touch base with my doctor and see what she says. I think I'm getting used to all of these weird things, and I tend not to get too concerned unless it feels serious - so thanks for the push to check in with my doctor. :)

Title: Re: Eye swelling
Post by larken on 06/07/12 at 22:58:24

My eyes used to swell when I was eating or even around anyone cooking one of my triggers. I am now on Gastrocrom and it is much better, though my one eye still swells periodically. It is most pronounced when I wake up.

Title: Re: Eye swelling
Post by PamH on 06/08/12 at 02:14:20

Larken,
I have almost given up on waking up with normal looking face. I can't seem to figure out what the trigger/multiple triggers are.
Pam

Title: Re: Eye swelling
Post by kimtg68 on 06/09/12 at 15:52:33

When I wake up I look like I had too much alcohol and hung over....only thing is I will not have had a drop. My eyes are swollen on top and bottom lids and my face is all blotchy. It clears up some as the day progresses. Except for bad masto days where I just look puffy and swollen all day.

Title: Re: Eye swelling
Post by frugalmama on 06/09/12 at 19:28:45

It's funny that some of you wake up swollen, as mine definitely gets worse as the day progresses.

I spoke to the immunologist about the swelling, and mentioned that it did start around the time I started on the Gastrocrom. She said, "that's weird", to which my husband replied, "What in our lives isn't"? LOL. So true! Anyways, she wasn't super concerned since it was isolated to my face, but I'm now started on Ketotifen and hopefully can find some stability on that and then try coming off the Gastrocrom. So, at least we have a plan!! :)

Title: Re: Eye swelling
Post by PamH on 06/10/12 at 08:41:17

That is great, good luck!! :) I figure I wake up swollen because I have gone 7 to 8 hours without taking an antihistamine?!
Pam