[Meredith]

in reply to: Prednisone-What to expect? #1064725

Thanks Shirley: Yes, I still have double vision and the prisms help tremendously. Like you I am fine when looking down (hense no prisms needed for reading glasses). They eyes have definitely settled down. Still puffy eyebrows and only a doctor or another Graves patient can tell that my eye lids are a bit retracted and that I have that glare look. The bulging eye settled down and though slightly bulging at least the 2 eyes are now the same!!! I’m not as gorgeous as I used to be but that’s just my lot in life. hee hee I try to keep positive.

I was seeing that eye specialist but I might look for another one just to try out different personalities. I must say it took my regular eye doctor to give me the prescription and prisms that work. I had a pediatric eye doctor and another specialist from Mass Eye and Ear try and fit me for prisms and get my prescription right and it was a disaster. The top dogs are always the best! I’m very lucky that my endro is the best and most compassionate doctor I know. Since I just had lab work done in June and all was ok I might ask for another lab work next month to compare to and then ask to be seen in September instead of waiting until my next scheduled appointment in December. Getting into this Endo is almost next to impossible!!!!!

[Meredith]

in reply to: Prednisone-What to expect? #1064723

Thank you Kimberly for your reply. I do still have my thyroid and as of my last blood tests in June my levels are all in the range of "normal". I hope to learn lots from everyone on this discussion board. I have never read that joint and tendon issues are a symptom of Graves but that was a definite symptom the first time so I’m assuming that my tendonitis in both my knees (with out obvious injury) is my body telling me something. Has anyone else had issues with tendonitis at the onset of Graves?

[Meredith]

in reply to: Prednisone-What to expect? #1064721

Hi all: I am new to this site. I was diagnosed with Graves Disease by an eye specialist from Mass Eye and Ear (brought into my Opthamogist’s office b/c they couldn’t figure out what the problem was) because I was having double vision, tearing and eventually swelling and protruding right eye. (Did I ever look like a freak show!) He put me on Prednisone and I was on it for 9 months – 60 mg for about a month before I got second/third opinions to get off the nasty drug. (one from one of the top endrocronologists at Mass General – who by the way had the worst bed side manner and I would never go back to him no matter what his reputation calls for) I was told that the side effects were far worse for me than the vision issues. I was lucky that it did not make me crazy or loose sleep but I felt very strange. I blew up (25 pounds – Ha ha the eye surgeon that prescribed the medicine also had a crappy bedside manner and told me that there were no calories in prednisone – I wanted to deck him!!!) and had that nasty "moon" face. It was a year in my life that I hope I never have to repeat. Once off the drug I was soon weaned off all my thyroid meds as well and eventually found myself in remission. I got prisms for my glasses which have helped tremendously. There was a time when I really should not have been driving; especially, down the highway where there would be 8 lanes to choose from 4 of which would have killed me had I chosen one!!!!

I have had 3 wonderful drug free years. Unfortunately, I feel it all creeping back. Eyes are puffy, aching joints (the first round was tendonitis in both elbows with no injuries to speak of) now I am feeling it in my knees. Strange pains that seem to come from no where – difficult to walk. Feeling tired and not wanting to get out of bed, gaining 6 pounds in a month (ok its summer and I’m not eating as I should) (I had just finally got down to my pre graves weight!!!!) Today in a yoga class my legs were shaking up a storm – weakness coming back. My eyes are beginning to get sensitive to the light and weep a bit. all symptoms that I had 4 years + ago.

I know that this time I am going to approach this damn disease much differently. I will not go back on the prednisone!!!!! I guess because I never had to have the eye surgery I can not say it was worth it! That said, it could have turned out quite differently had I had to have had the eye surgery.

Does anyone have good advise about diet? I have read some things about what to avoid. No aspartame, no iodine. Avoid processed foods that might harbor iodine and msg. I stay away from Chlorine as well. I would love a more expansive list. I want to try a more hollistic approach to this disease and would love some input! Does anyone know anything about doing eye exercises to keep the eye muscles strong and maybe the scar tissue down? The eye doctor scoffed at this when I brought it up 4 years ago but my instinct tells me differently.

[Author]

Posts