[Shugie53]

#1060253

HAS ANYONE HAD ANY SUCCESS WITH STEROIDAL EYEDROPS IN REDUCING THE SWOLLEN EYELID & EYEBALL

[Shugie53]

#1181553

no input? I have read so much online. Hoping someone will see this & tell me if you’ve had any luck. a prednisone pack due to allergic reaction to the methimazole put my eye back to normal looking for a few days but of course they wont prescribe steroids for good reason.
hoping someone out there has found a magic bullet b/c I feel like I look like popeye
just 2 months ago I looked like a happy 60 yr old woman with pretty eyes the only good quality I thought I might have going for me
Now……

[snelsen]

#1181554

Hi. To review, I think I recall you are new to Graves’, had an allergic reaction (rash and hives) to methimazole, was prescribed a steroid pack for that, and it helped both things. But…you eye symptoms sound like you may have TED, thyroid eye disease. Have you seen a neuro-ophthalmologist? I suggest that. Or, be SURE you see an eye doc very familiar with TED. The first choice is best, and if you do call, say on the phone that you have active Graves, and think you may have active TEd.
YEs. Absolutely, the prednisone will help your eye. But for a short period of time. Usually used as an emergency measure to protect the optic nerve, it is is compressed int he active stage. I think your next step is to see if you have TED. Do you live in an area where you can find a neuro-op doc? A referral might help.
Steroid eye drops are used VERY very conservatively by good doc. They can cause many irreversible eye issues if used long term.
Shirley

[snelsen]

#1181555

And..I certainly know how you feel. Look at my history! And years later, my eyes, are tearing all the time, they smart and burn, and i am very photophobic. My experience is very severe, and fortunately, very rare!
Shirley

[kingzito]

#1181556

I use Refresh brand eye drops to moisture my dry eye. Helps a lot. They seem to feel better in the winter time though but I’m wondering if I’m just getting used to the discomfort.

[Shugie53]

#1181557

Dear Shirley, thank you so much for taking time to write me. This forum is a little harder to use than the one for LLS (for leukemia which my husband has chronic) only saying that when looking online for a support group similar to the one we used to help him, there are multiple online support groups for thyroid. This is the one I found that seemed specifically Graves.
Yes and thank you for ack. I was dx mid Sept.
Yes I had the TED. My endo. sent me to a opthamology specialist in the field at a local medical center. He gave me the whole scenario , measured my eyes, said I’d prob. need a CT scan at some point but that it might be years down the road before he could or would be able to help me at all re my right eye which is not as bad as some pictures I’ve seen thats for sure but bad enough to make me want to hide out alot. Im still in the “I dont believe this” stage , thinking that surely to goodness in 2013 there are eyedrops or nasal sprays that would relieve pain & swollen lid & eyeball but this specialist is ultra conservative and wont prescribe anything. My family dr. said he was willing to let me try Prednisolome acetate 1% but I chickened out after reading possible side effects and not having a local “regular” ophtamologist. the specialist is in neighboring town and I work f/t so Im trying to conserve my sick leave for whatever the future holds.
I know I’m writing way too much but you’re the first person thats written me back and it sounds like you’ve been thru h*ll so I prob. sound like a whiner to you and I admire your courage but I cannot imagine how it has changed your life with all you’ve been through. My1/2 sister had the radioactive iodine treatment 20 yrs ago. Her eyes werent bugging out before she took that but they bugged out afterwards and she never had the ways & means to pursue surgeries or anything so she just stays on the sythroid (since the radioactive treatment causes you to go hypo) and she’s lived with it. Me, I’m not ready to be out of the public nor give up my little bit of social life, and I really dont feel bad, just the EYE.

snelsen wrote:

Hi. To review, I think I recall you are new to Graves’, had an allergic reaction (rash and hives) to methimazole, was prescribed a steroid pack for that, and it helped both things. But…you eye symptoms sound like you may have TED, thyroid eye disease. Have you seen a neuro-ophthalmologist? I suggest that. Or, be SURE you see an eye doc very familiar with TED. The first choice is best, and if you do call, say on the phone that you have active Graves, and think you may have active TEd.
YEs. Absolutely, the prednisone will help your eye. But for a short period of time. Usually used as an emergency measure to protect the optic nerve, it is is compressed int he active stage. I think your next step is to see if you have TED. Do you live in an area where you can find a neuro-op doc? A referral might help.
Steroid eye drops are used VERY very conservatively by good doc. They can cause many irreversible eye issues if used long term.
Shirley

[ChristinaDe]

#1181558

Hi Shugie53!

This eye stuff is SO frustrating, isn’t it? My thyroid eye disease has been termed mild by the neuro ophthalmologist, but that hasn’t stopped it from bothering me. I haven’t learned about any magic bullets either. Here’s 3 things that I was told (by my eye specialist) that made me decide to try to stay as calm as possible about the whole thing. For now anyway.

1. The eye component of this, more than any other part, really justifies the word “patient” on our charts. And he knows it’s difficult.
2. The eye component still has many mysteries to it for those trying to help us. He is unable to predict whether it will worsen or not, or even whether it may improve on its own and to what degree. It’s all a “wait & see” for him too.
3. Here’s the part I hang on to: In the end, once thyroid levels are normal & stable for a period of time, and once the eye(s) stabilize as well and are no longer actively changing (for better or worse)…there are so many things that can be done for us, clinically & cosmetically. They can fix this! Especially if it remains mild or moderate. And as Shirley said, my doc also said…the more severe versions of this disease are actually fairly rare.

Of course, there was one caveat (isn’t there always?). IF there are vision changes, that requires an immediate call to my specialist, and if after he assesses them it is determined that anything is being threatened, then something may have to be done even during the active phase. But right now, my optic nerve and all that are not under threat, so we wait. Patiently. Hard as it is.

Keeping fingers crossed. For both of us!

[Shugie53]

#1181559

I love your message Christina thank you so much.
Yes the optha. told me”graves will teach you patience”
It still ticks me off to find that nothing much has changed since my sister got it 20 yrs ago. its not on the top of the charts for researchers I guess
If you google treatments offered in the UK its alot differnt from what I’ve read.
Thank you for being here, I did get the exact same info as you .
I know it will be ok in time…the patience part is easier said than done.
hearing from others is much better than going around asking everybody “how bad do I look” and taking pix of myself every day & kind of freaking out about it.
“I’ll lean on you and you lean on me and we’ll be okay.”
Dave Matthews

[snelsen]

#1181560

shugie!! Guess who lives down the street from me!!!
Dave Matthews! And he is the niecest guy in the world. I see him in the grocery store with his twins!
Shirley (:

[ChristinaDe]

#1181561

Shirley, I’m so jealous! I love Dave Matthews!!! A personal fave.

And Shugie, I love the quote you ended your post with! So true…
It really helps me to know that I’m not alone w/ all this too. That others are waiting right along side me (not that I wish any of this on anyone…but if it has to be, at least we can find & support each other along the way). It makes such a huge difference for me as well.

[Shugie53]

#1181562

snelsen wrote:

shugie!! Guess who lives down the street from me!!!
Dave Matthews! And he is the niecest guy in the world. I see him in the grocery store with his twins!
Shirley (:

No way Shirley, thats good karma

[Shugie53]

#1181563

ChristinaDe wrote:

Shirley, I’m so jealous! I love Dave Matthews!!! A personal fave.

And Shugie, I love the quote you ended your post with! So true…
It really helps me to know that I’m not alone w/ all this too. That others are waiting right along side me (not that I wish any of this on anyone…but if it has to be, at least we can find & support each other along the way). It makes such a huge difference for me as well.

We have to demand some attention to this, its unacceptable, I dont believe so little is known, after all these years. Im on a mission . Thank you for advice about neuro optha. Im going to look for one of those too.

[Shugie53]

#1181564

Shugie53 wrote:

snelsen wrote:

shugie!! Guess who lives down the street from me!!!
Dave Matthews! And he is the niecest guy in the world. I see him in the grocery store with his twins!
Shirley (:

No way Shirley, thats good karma

PS Shirley, I dont know if you live near UVA in Charlottesville but there’s a clinical trial there about graves disease. I corresponded by email with someone from the website but I live too far away, thought you might want to look it up

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