Hi Cheng,
Prednisone worked for my TED. I had very mild TED for a little longer than a year. The same week I finally went hypo post-RAI, my eyes bulged out the sides, became very red and irritated, and I experienced severe pain behind my eyes. Two ophthalmologists later, I was finally diagnosed with moderate TED. I underwent an MRI on my orbit with contrast, and it was determined that the swelling was severe enough to warrant prednisone. I kid you not – within 12 hours of my first 50mg dose, the pain was completely gone and my eyes slowly began to retreat back into my orbit. After six months of a slowly tapered dose, my eyes were back to mild TED – looking the same way they did before the sudden swelling and pain.
The prednisone was not without side effects, though. Some people do better than others, but my body responded just as positively (TED relief) as it did negatively – I gained a lot of weight, got stretch marks on my “love handles” for the first time in my life, had acne (at 27 years old) for the first time in my life, and had palpitations the whole time I was taking the drug. To me, it was worth it at the time but now that I have started to lose the weight and my face is completely clear one year later, I am glad I don’t have to take prednisone anymore and hope I never do again.
Kimberly mentioned some people’s symptoms return as soon as they stop taking prednisone – mine did not. My neuro-ophthalmologist (I hope you are seeing one of these and not just any ophthalmologist) monitored my progress every three weeks, and we tapered down my dose by 5mg every three weeks, so very very slowly. Had my symptoms returned, he told me he would bump me back up to a higher dose but fortunately that wasn’t necessary.
As a young woman, the side effects were pretty difficult for me but I would make the same decision again if I had to. The pain and swelling was so bad that I would not leave my house except to go to appointments, and wore my sunglasses all hours of the day. Acne, weight gain, and stretch marks are awful, but necessary evils. I call prednisone “a blessing and a curse” because it saved my vision, and here I am one year later – it’s been two months since my bilateral decompression and my eyes are back to their pre-TED look and feel.
By the way, I took prednisone in the form of a pill. I know some people take it via IV. Also, my neuro-ophthalmologist told me if my eyes did not respond to the prednisone, they would not respond to radiotherapy either, so that was never our backup plan.
