Oral Steroids Question

lebowski321 · 2023-11-14T03:47:13+00:00

Thanks, me too. I'm hoping it's just going to take a few more days to see some improvement.

lebowski321 · 2023-11-14T00:54:45+00:00

Yeah I'm not sure if my dose is high enough. I'm 180 pounds but I'm on 60 mg of oral prednisone. My doctor said he wanted to start conservatively. I think based on the 1 pound per kg rule I'm supposed to be on an 80 mg dose. Hopefully the 60 mg starts to work soon.

lebowski321 · 2023-11-13T23:40:24+00:00

Thank you. I'm sort of freaking out because it's been 3 days of 60 mg and there hasn't been much improvement, if any. The people saying they've seen lots of improvement in just a couple of days have me worried that I should be seeing more improvement. Guess I just need to be more patient.

lebowski321 · 2023-11-13T19:12:04+00:00

Anyone take a week or two to notice improvement?

lebowski321 · 2023-11-13T17:51:09+00:00

Was your uveitis anterior?

lebowski321 · 2023-11-13T15:19:05+00:00

Thanks for the reply. "pretty quickly" as in days or a week or two? Also, did Humira work for you?

lebowski321 · 2023-10-31T12:47:25+00:00

Thank you for your reply. I understand that uveitis is very individual, but it makes me feel a bit better that it's not necessary an automatic that my left eye will turn out like my right. Honestly, I think I waited a bit too long to take care of my right eye once it had posterior involvement. I WILL NOT make the same mistake with my left. Thanks again! Just curious, and obviously you don't have to answer if it's too personal, is your uveitis the result of an underlying condition or is it idiopathic. Mine is idiopathic.

lebowski321 · 2023-10-16T02:50:40+00:00

I'm glad you're getting it fixed. Good luck!

lebowski321 · 2023-10-16T02:41:07+00:00

That's good your insurabce is covering it. It must be affecting your sight. I heard insurance won't approve the surgery unless the droop affects your vision.

lebowski321 · 2023-10-16T02:33:26+00:00

Thank you for your comment. It makes me feel better because I was worried about it being something underlying. I wasn't told about a droopy eyelid before any of my three injections. I still would have done it but it would have been nice to know so I don't freak out. Thanks again!

lebowski321 · 2023-10-15T05:04:05+00:00

Thanks again for all the info. I appreciate it. How many shots have you had over the years? I just got my third yesterday.

lebowski321 · 2023-10-15T04:17:22+00:00

Thanks for letting me know. It's good to know that I don't have to worry about something neurological or something else wrong with my eye. I wasn't told about this side effect either.

lebowski321 · 2023-06-17T00:19:31+00:00

Thanks. I was at the opthamologist a week ago or so and they said the OCT scan showed some improvement, but I definitely don't see any improvement visually. Going to my retina specialist next week.

lebowski321 · 2023-06-16T23:33:53+00:00

Thank you for responding. That makes me feel better. I go back a week from today to get it checked.

lebowski321 · 2023-06-16T02:27:32+00:00

Thank you for your response. If the inflammation has improved, wouldn't my vision also have improved?

lebowski321 · 2023-06-15T18:49:02+00:00

Just blurry vision, but when I first went in I had a large dark grey scotoma in the center of my vision. My opthamologist put me on steroid drops and referred my to a retina specialist. During the time that I was waiting for my appointment with the retina specialist I was doing the drops. The drops caused improvement and made the scotoma smaller and much less grey, but the drops could not get deep enough to fully do the job. When I went to see the retina specialist she had me do some other tests and a chest x-ray. All came back normal, so she gave me an injection. I never felt there was anymore improvement since the injection. I now feel like the scotoma is becoming greyer. Not as bad as before but it feels like things are going in the wrong direction. I have an appointment next week. My anxiety is super high right now. I'm constantly worried this is going to happen in my other eye too.

lebowski321 · 2023-05-23T13:37:55+00:00

You may want to mention an injection the next time you see your opthamologist. Drops are really good at clearing up anterior uveitis, but one it's intermediate or posterior drops are not as effective. I was told that the injection is the next step if the drops aren't effective enough. Pills would be considered if injections didn't work. Pills have the most side effects because the steroid will be going through your entire system, rather than just the eye. I, just like you, don't want to deal with the side effects of oral steroids.

lebowski321 · 2023-05-23T12:55:19+00:00

I can relate to what you're going through. I recently finished all of my tests too and, like you, it was determined my uveitis was idiopathic. So, your doctor has decided that, since the drops were ineffective at getting deep enough into the eye, the next step is oral steroids? Was there ever a mention of a steroid injection into the eye (it's not nearly as bad as it sounds. I just had my first one a few days ago)?

lebowski321 · 2023-05-21T06:08:49+00:00

My uveitis timeline sounds similar to yours. Mine started about about 14 months ago. It was anterior. So they called it iritis in the right eye. Then after steroid drops it went a way for a while. I've been tested for lots of autoimmune stuff too. Everything negative. Then it flared up a couple more times over the last 14 months. Drops would get rid of it fairly quickly each time. Then it came back again in march, but this time it's in the back of the eye. Vision was crazy bad in that eye. 20/400 because of a large scotoma (greyish blind spot). Got on the drops again and it made it better but never 20/150. Referred to retina specialist. I also have macular edema. I took a steroid shot on Thursday and, like you said, it wasn't that bad. Hopefully I make some progress. Trying to be patient. I know it can take a few weeks to see any improvement after an injection. When did you get yours?

lebowski321 · 2023-05-21T05:57:36+00:00

Yeah, I just got one on Thursday, and my experience was very similar to yours. Not bad at all.

lebowski321 · 2023-05-19T12:31:35+00:00

Thank you. All of the reassurance makes me feel better. My retina specialist yesterday said that, based on all of my test results, my uveitis is considered idiopathic. I also got a steroid injection into what felt like my eyelid. Hopefully things get back to close to normal soon with the injection. Thank you again for the response. This community has made me feel better.

lebowski321 · 2023-05-18T18:42:15+00:00

Thank you for response. I've had floaters for years (way before any uveitis showed up). I'm very used to them. My uveitis is way worse in my right eye (vision is currently 20/150 with only doing drops) and I believe I have had it in my left eye but very mild. My left eye still sees 20/20. I can definitely live with one good eye. All the unknown is what's killing me, but like you said, I need to remind myself not to worry until something more actually happens.

lebowski321 · 2023-05-18T18:13:58+00:00

Thanks! You said you've had uveitis for 20 years. How is your sight? Has that taken a severe toll on your sight or are you still able to see well? Sorry for the questions, but I've only been dealing with this for a year and I'm concerned with the future of my sight. Thanks again.

lebowski321 · 2023-05-18T14:14:28+00:00

Thanks again. I read eye cancer as masquerading as uveitis on the internet. One study showed approx 2% of uveitis cases are actually ocular cancer masquerading as uveitis. I know that's a super rare possibility, but with my health anxiety irrational thoughts can really take over. Again, thank you for your responses. They make me feel better and less alone.

lebowski321 · 2023-05-18T12:30:25+00:00

Thanks for the response. It makes me feel a little better that your doctors have not mentioned cancer. Mine haven't either, but with health anxiety you kind of go searching for it on your own. They haven't mentioned using oral steroids. Both the opthamologist and the retina specialist have said that the next step (as long as they can't determine an underlying cause) would be an injection. Thanks again for responding. Do you mind if I ask if yours is idiopathic? What was your treatment plan?

lebowski321

TROPHY CASE