[jaqeinquotation]

#1060125

Hello,

I have been prescribed Prednisone for the 3rd time (@ different times) and I’m not feeling good about taking it because of the side effects of course. The last time I was on it I developed this moon looking face and gained some weight-not to mention the mood swings…oh yuck it was horrible. This was just about 6weeks ago and I was tapered off I was just told to stop.

I’m not exactly sure why I was prescribed it again. I obviously have very swollen eyes (upper and lower) but the damage is done so why prednisone again? (ididn’t ask the surgeon because she didn’t have time to answer. She just said, “Go back on the steroids and I’ll see you in 2 months.”

My dosage is minimal; only starting with 25mcgs for 1 week then 10 then 5.
I’ve heard of people being prescibed higher dosages but nevertheless I am really scared to take them again

Any tips to help me get over the scare..Im afraid of Cushing’s Disease?

[Raspberry]

#1180594

I say call up the surgeon’s office and insist on getting an explanation. A doctor should make the time to explain when a patient has questions about taking a serious drug. It may be the right thing to take but I’d be cautious too in your position!

[jaqeinquotation]

#1180595

Thanks for your response.

The surgeon seemed be to be running behind, which is no excuse. I spent literally 95% of my visit with the resident doctor who was Phenomenal. He too suggested prednisone right before the surgeon came in and reviewed my file for about 7 minutes. She’ll be away until September so I unfortunately I will have to keep my questions until then:|

[snelsen]

#1180596

Hi, Yes, that really IS a very small dose. I am wondering if it has been prescribed because there is concern about pressure on your optic nerve. An orbital CT would document that, plus not seeing the color red as clearly, and some other tests that indicate decreasing vision.

Without checking back on your other posts, I don’t recall where you are in this whole TED process.

Re Cushing’s, I’d say that is a non-worry. It can be an outcome of very long term use is corticosteroid, decades and decades. But not with the short periods of time you have had it.

Re steroids. I understand, and I hate them.

Re knowing more. I bet you anything the reason was stated in the chart. Or try to track down the resident who saw you first. While we are on the subject, I always sign the release of information forms required, so I have a legal right to access my OWN MEDICAL RECORD. I regard this as essential. And, believe me, I do find mistakes and assumptions. I have tried, but not succeeded, to get corrections made.
Examples-left mastectomy when it was right. Chart for Nelson rather than Nelsen. Listed meds that I had not taken for years, despite completing the med update at every single visit. Had procedures done at office visit which were not stated in the chart. Had stated procedures which were NOT done. Musta been some other patient! Just to name a few………….
Shirley

[Kimberly]

#1180597

Hello – agree with those who said that you deserve more information! As Shirley noted, concern about optic nerve compression would be a good reason to try steroid therapy, but you certainly should have had time to ask questions. Perhaps the resident doc that you mentioned would be a good source for getting a more detailed explanation?

[jaqeinquotation]

#1180598

“I am wondering if it has been prescribed because there is concern about pressure on your optic nerve. An orbital CT would document that, plus not seeing the color red as clearly, and some other tests that indicate decreasing vision”

I believe this may the cause for the prescription. There is a different when I see red (left vs. right eye). Most recent CT scan showed crowding and pressure on the optic nerve. Visual field test was done also;at first wasn’t good but getting better. As a matter of fact, a visual field test is done every visit.

I’m a bit confused though and I plan to ask this question when I see the surgeon next…if there is pressure and obvious decrease in vision, why not do surgery?
It’s the eager, tired of waiting, tired of looking tired part of me speaking but really it just seems that the longer they wait to do surgery the more damage waiting is going to cause.

Could it be that the prednisone is supposed to make the vision better-attempt salvage what has been affected thus far if you will?
Should it ease the pressure and clear up the blurriness?

Maybe if my next visual test is good she’ll add me to wait list for surgery:/

[snelsen]

#1180599

yes. agree. is for optic neuropathy. they give it to protect your optic nerve.
Buying time for whatever reason.
Are you in active, or hot phase, or cold and inactive.
More later, gotta go to bed..
s

[Kimberly]

#1180600

Agree with Shirley that this was likely prescribed to help protect the optic nerve, but I would definitely make sure that all your questions are asked at your next appointment!

[jaqeinquotation]

#1180602

Thanks for the feedback:)

I’m taking them reluctantly. On 15mcg’s this week and then down to 10mcg’s for the next 2 weeks then 5mcg’s.

snelson: you asked which phase I’m in and to be honest with you I’ve never really known how to answer that question because I don’t know what that means.
I haven’t seen anyone else with eyes like mine and they call it severe. I’m not sure if they’ve stopped changing or if I’m just getting used to being ugly lol

For them to be buying time at my expense I’m not sure what good that is doing? Why not just do the surgery?
What I do know is that I’m at work and I can barely see what I’m typing-everything is BLURRY and I’m hoping it will clear up throughout the day but my fear is becoming a reality I may have to leave my job because I can’t see well enough to do it anymore.

Really sad

[Kimberly]

#1180601

Hello – this is a nice piece from the Thyroid Eye Disease Society that illustrates the phases of TED and when treatment is initiated:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://thyroideyedisease.org/the-course-of-ted/

[vdoroshenko]

#1180603

Hello,
My eyes started swelling in October 2009, but I was not diagnosed until January 2010. At that time I was diagnosed with Thyroid Cancer and Graves. In February 2010 I had total thyroidectomy following RAI. Right after RAI my eye swelling and vision got worse, but that was predicted by my ophthalmologist (one of the best in this field). Therefore I was put on steroid right after that for a few month. A few weeks after I stopped taking steroid, my vision got worse again and then I started losing colors. After a number of conference calls between my eye doctor and endocrinologist, and after reviewing all existing in the world research papers about this topic (I got it from the medical librarian) decision was made to put me on 10 orbital radiation treatments following steroid. The good thing my vision came back completely by the end I finished radiation, the bad thing I had to be on steroid for another 3 months after that (mandatory). Yes, my face got ugly, my curly hair became strait and dry forever, I gain about 30lb. My co-workers stopped saying “hi” because they could not recognize me. In addition to that my TSH stayed undetectable until October 2012 and my medication does was changed probably 8 times. But all of these were done before orbital decompression surgery to stabilize my eyes. I had orbital decompression in June of 2012 and when my TSH got more or less normal I finally had my upper and lower eyelid surgery in April 2013. You can’t do this last surgery if your TSH out of range otherwise swelling will come back (from my surgeon experience – also one of the best surgeons in this field). Last surgery recovery took some time, but after 3 years of “moon” face and ugly eyes, I started getting my look and face back. People that would not recognize me for some time are saying “hi” to me again. It wasn’t easy, but I was patiently taking steps suggested by my doctors and finally I see results. Graves need to be treated. Please let me know if you need some specific information about medication, surgery or anything else.

[jaqeinquotation]

#1180604

Thanks for sharing your story. Im so happy and feeling hopeful to hear that you had your surgeries and started to get your look and face back. I pray for this day every chance I get.

There’s a saying, “He who feels it, Knows it”. I’m really hoping that I won’t have to take preds after I’m done tapering of this dose because as you know, it isn’t pretty. And the ways it swells it’s victims etc; the thought of taking them long term messes with me mentally because I know it’s not good for us!

Personally, I would like to hear that I’ve been put on the wait list for surgery and I’m not sure

I won’t know what this next course will be until I see the surgeon again in September. She wont care how my eyes look or feel. Bless her heart she have no bedside manner and she never looks at me. She will base her decision solely from the results of the visual field test I take right before I meet with her that day.

I wish that my Endo and surgeon would share information and ideas but that would be asking for too much.:rolleyes:

[Author]

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