How are You doing now ? I have same disease in my right eye. On steroids for last three months. Started with 80mg , now I'm on 20mg... they want me to take it for another 5 months. Steroids work but at lower doses it may come back. How can you describe this pain ? Is methotrexate good for you .. any side effects ? I hope you recover from this.Wish You all the best :)
Hi! I suck and need another video, lol. Yes, Prednisone is a double-edged sword: it worked but I was unable to go below 20mg and it messed up my body. The methotrexate works! I started on a full syringe injection, and I am down to 0.3. It keeps it away and I have lost most of the steroid weight. I feel "normal" as I can for now, even though I may be on the MTX for life...
Thank you so much for this info. I saw in your comments you started the chemo shots. Have those helped more than the prednisone and would love to know if the side effects are bad. Thank you so much for the first hand account of this all.
Hi! I should do another update but I stink at videos, lol. I started chemo shots last August and am still on them. They have definitely helped! But it's not completely gone. I was able to stop prednisone around Christmas (lost 23 pounds since and hopefully a few more)! I see specialists again in a couple months...
@@PinkGrammarGirl thanks so much for the response! It’s wonderful to hear the chemo shots helped and that you were able to get off of prednisone! Keep us posted - your video was super helpful as someone starting treatment. Thanks so much!
@@lindsaynicole5831 Specialists say I will stay on methotrexate for another year or so (it's slow-acting he says). I do feel better with my weight and body, but my eye exams keep changing and I'm struggling to read and find workable glasses. I just use big font now, gah, lol. This is rare, I'm told, and cases like mine that don't respond to steroids are even more rare. BOO!
Oh, I'm sorry! It truly is a frustrating experience. I am too lazy to keep making YT vids, but I have an update: I had to stop prednisone as the weight gain was too much and it was making my bones brittle. Now I am on methotrexate weekly. I do the shot. I started a full needle over a year ago (think baby diabetes needle) and am now down to .25! I have some quality of life, and am coming to terms with the fact it might be for life.
Hey, thanks so much for sharing. I’m really struggling with this, it’s been ruining my life for years and I finally received a diagnosis recently. Have you managed to find something else that worked for you? The steroids aren’t working for me, I’ve tried tablets and drops
Hi! I'm sorry to hear this. I need to do an update video but I'm lazy, lol. So I got off the steroids at Christmas after being on them for 2 years. I've lost about 27 pounds of the 50 I gained. My ophthalmologist, in conjunction with my rheumatologist, started me on methotrexate (low dose chemo) shots weekly. This was last August, so almost a year now. It's helped and I don't need any pain meds, but the inflammation is still there but not too bad. My eyeglass prescription keeps changing and I can't afford numerous eye exams and new lenses. My left eye is damaged and won't correct with lenses now. I struggle to read. We're sticking with methotrexate for another year or so for now....good luck!
@@PinkGrammarGirl I’m glad to hear things have improved some for you, but sorry to hear about the permanent eye damage. How are you finding the methotrexate shots? Do you have side effects?
@@bellakin5075 I missed this reply! I'm sorry! I am still on the shots. I am down to 0.3 from a full needle. I hate needles but they are small and it's keeping it shrunken enough to function.
Hi there! So I had to get off steroids after 2 years because it's not good for you. I am currently on methotrexate. It's like low-dose chemo. They have shots and pills. I do shots once a week. I started at a full syringe (little baby insulin ones) and am down to .3 now, which keeps it at bay! I have lost almost all the weight (I found I went through early menopause so that made things worse and I have osteopenia) and feel "normal" for the first time in years. My ophthalmologist works with my rheumatologist (rheum prescribes the meds). It's a medicine commonly used for rheumatoid arthritis and what we have is basically inflammation, just in the eye. Ask about it! Good luck!
Pink Grammar Girl okay... I am actually also on (prednisolone) steroid medication from last two years... initially I am also given with high dose and gradually reduce and as of now I am taking 5mg dose per day from last one year... And I am bit confuse whether to take the covidshield vaccine or not, as I am worried about taking vaccine while I am on steroid medication. You have any view on it.
How are You doing now ? I have same disease in my right eye. On steroids for last three months. Started with 80mg , now I'm on 20mg... they want me to take it for another 5 months. Steroids work but at lower doses it may come back. How can you describe this pain ? Is methotrexate good for you .. any side effects ? I hope you recover from this.Wish You all the best :)
Hi! I suck and need another video, lol. Yes, Prednisone is a double-edged sword: it worked but I was unable to go below 20mg and it messed up my body.
The methotrexate works! I started on a full syringe injection, and I am down to 0.3. It keeps it away and I have lost most of the steroid weight. I feel "normal" as I can for now, even though I may be on the MTX for life...
I have it too...
Oh man, I'm so sorry. How are you being treated? I just got one in the OTHER eye!
@@PinkGrammarGirl just in left eye.... Now it's ok... I can move my eye
@@PinkGrammarGirl 15 days 40mg steroids
15 days 20mg
10 days 10mg
10 days 5mg
@@noisytube5806 steroids aren't working for me. Awaiting a biopsy and a change of meds, arg...
Thank you so much for this info. I saw in your comments you started the chemo shots. Have those helped more than the prednisone and would love to know if the side effects are bad. Thank you so much for the first hand account of this all.
Hi! I should do another update but I stink at videos, lol. I started chemo shots last August and am still on them. They have definitely helped! But it's not completely gone. I was able to stop prednisone around Christmas (lost 23 pounds since and hopefully a few more)! I see specialists again in a couple months...
@@PinkGrammarGirl thanks so much for the response! It’s wonderful to hear the chemo shots helped and that you were able to get off of prednisone! Keep us posted - your video was super helpful as someone starting treatment. Thanks so much!
@@lindsaynicole5831 Specialists say I will stay on methotrexate for another year or so (it's slow-acting he says). I do feel better with my weight and body, but my eye exams keep changing and I'm struggling to read and find workable glasses. I just use big font now, gah, lol. This is rare, I'm told, and cases like mine that don't respond to steroids are even more rare. BOO!
I am going through this .. 3 years on prednisone and I am starting radiation soon. Mine is wrapped around my optical nerve.
Oh, I'm sorry! It truly is a frustrating experience. I am too lazy to keep making YT vids, but I have an update: I had to stop prednisone as the weight gain was too much and it was making my bones brittle.
Now I am on methotrexate weekly. I do the shot. I started a full needle over a year ago (think baby diabetes needle) and am now down to .25! I have some quality of life, and am coming to terms with the fact it might be for life.
I have this diease and its my left eye as well.
I'm sorry to hear this. Have you responded to any treatment?
Hey, thanks so much for sharing. I’m really struggling with this, it’s been ruining my life for years and I finally received a diagnosis recently. Have you managed to find something else that worked for you? The steroids aren’t working for me, I’ve tried tablets and drops
Hi! I'm sorry to hear this. I need to do an update video but I'm lazy, lol. So I got off the steroids at Christmas after being on them for 2 years. I've lost about 27 pounds of the 50 I gained. My ophthalmologist, in conjunction with my rheumatologist, started me on methotrexate (low dose chemo) shots weekly. This was last August, so almost a year now. It's helped and I don't need any pain meds, but the inflammation is still there but not too bad. My eyeglass prescription keeps changing and I can't afford numerous eye exams and new lenses. My left eye is damaged and won't correct with lenses now. I struggle to read. We're sticking with methotrexate for another year or so for now....good luck!
@@PinkGrammarGirl I’m glad to hear things have improved some for you, but sorry to hear about the permanent eye damage. How are you finding the methotrexate shots? Do you have side effects?
Same its been ruining my life since 2002.
@@bellakin5075 I missed this reply! I'm sorry! I am still on the shots. I am down to 0.3 from a full needle. I hate needles but they are small and it's keeping it shrunken enough to function.
@@bobbiann221 I'm sorry to hear this. I hate how rare it is and no one knows why I got it.
Have it, steriods not working. Any update?
Hi there! So I had to get off steroids after 2 years because it's not good for you. I am currently on methotrexate. It's like low-dose chemo. They have shots and pills. I do shots once a week. I started at a full syringe (little baby insulin ones) and am down to .3 now, which keeps it at bay!
I have lost almost all the weight (I found I went through early menopause so that made things worse and I have osteopenia) and feel "normal" for the first time in years.
My ophthalmologist works with my rheumatologist (rheum prescribes the meds). It's a medicine commonly used for rheumatoid arthritis and what we have is basically inflammation, just in the eye. Ask about it! Good luck!
I did not respond to methotrexate and then did immune suppressant therapy and it was a no. Now starting radiation next month after surgery again.
How are you feeling now? Hope the steroid dose might be reduce by now
Hi! I'm down to 20 with pain. Awaiting a biopsy and a change of meds. Steroids just don't work for me. Thanks for asking!
Pink Grammar Girl okay... I am actually also on (prednisolone) steroid medication from last two years... initially I am also given with high dose and gradually reduce and as of now I am taking 5mg dose per day from last one year... And I am bit confuse whether to take the covidshield vaccine or not, as I am worried about taking vaccine while I am on steroid medication. You have any view on it.
@@PinkGrammarGirl Hi, please look at this one too, it might help. pubmed.ncbi.nlm.nih.gov/10960899/
@@tenzinnorbu4286 You can certainly take any vaccine. I am on too, and I have already taken both doses, I am at a much higher dose.
Shweta Gulati, hi Shweta, thank you so much for the much needed information.
my mom have too
I'm sorry! I recently started chemo shots.
Have they worked because I think that is what I might have to think about doing