Posterior Scleritis and acupuncture
Posted , 7 users are following.
Has anyone tried this treatment with success? I was diagnosed with posterior scleritis 9 years ago, been on prednisone at various doses ever since. Tried methotrexate, cellcept, and steroid injections in my eyeball. They are all bandaids, not actually cureing anything. But recently I decided to go the eastern route... I'm seeing a Chinese healer for acupuncture, he believes all eye diseases stem from a week liver. He is trying to strengthen it with herbs and acupuncture, and I haven't had any flairs yet. But time will tell. Just wondering if anyone has had any luck with it, thanks!
0 likes, 12 replies
Pamela_Elle Jole
Posted
I too have gone the same route as you. Although I keep on going the Western Medicine route because of the pain and fear of losing my sight, I also go weekly to an acupuncturist. They believe the eyes are a reflection of the state of the liver. I have taken their herbs with high hope but I still have to rely on the methotrexate and now some remicade infusions. When I go to the gym, I've been listening to Oprah's supersoul sundays; I highly recommend them. I refuse to let this get the best of me!
Jole
Posted
Hi Pamela, My goal is to get off the Prednisone completly but it it very scary to even think about trying. I know that if the acupuncture isn't really working and I try to cut down on prednisone it's going to flair. I haven't had a flair for 8 months, so it's hard to even concider putting myself through it. When I have to increase my pred to control a flair, it's a 3 month process of being sick to get back down to a safe amount.... I just keep thinking and hoping 1 day this disease will burn out and go away as quick as it came
Pamela_Elle Jole
Posted
Jole I understand completely. I was on prednisone for almost a year but as much as the prednisone use conquers the pain it also does other horrible things to your body. Bone loss is one of the most significant things about prolonged pred use. My eye doctor was insistent I get off of it and my bone density proved the effects of prednisone. Believe me if prednisone did not have such significant side effects I would still be on it. Also, when you decide to get off of prednisone it takes a long time of tapering. It took me six months but now I can sleep through the night again, those mood swings are gone and I don't have fear of the internal damage it does.
I wish you luck and patience because it has been a test for me. I, too keep on hoping this will all go away!!!
Jole Pamela_Elle
Posted
Hey Pamela, Unfortunately I know about the bone loss. I have already been diagnosed with osteopina, but I guess that's to be expected after almost 10 years on prednisone. My eye docs have been trying to get me off it for years but unfortunately every alternative they offer me hasn't worked. I have been on methotrexate and cellcept, both made me horribly sick and I ended up in the hospital multiple times with pneumonia. I've tried the pred eye drops but posterior scleritis is in the back of the eye and it doesn't reach it. And I've gotten steroid injections into my eyeball, and that was just horrible, painful, and did nothing. Everytime I cut down on prednisone lower than 6mg a day, it flairs up very badly. I end up having to go up to 35 or 40mg just to calm it down. The flairs have also caused 1/4 of my vision loss in my left eye. I just wish I had more options. I'm very happy to hear that the chemo and remecade infusions are working for you. Do you have posterior, or anterior scleritis? And have they found any other medical problems that could be the cause of the disease in you? Cause they have been running tests on me for 9 years and can't find anything else wrong, but tell me it's normally secondary to another disease or disorder...
renee45869 Jole
Posted
Mine started as episcleritis and is now Scleritis with deep eyeball pain. Am on steroid drops. Was taking Motrin too but that ruined my stomach and now I have either an ulcer or gastritis. So I am bearing the pain for the most part. It started in my left eye 6 years ago and moved to right eye then back to left and is now in the right eye for the past two years. My third opinion dr said he couldn’t help me anymore and that I may want to get a second opinion — I should have reminded him that he was my third opinion but whatever. So my protocol at this point is prednisone drops 3-4 x per day and 30 mg per dropper full of CBD OIL TINCTURE UNDER MY TONGUE 4 x a day. I’ve also added a CBD WITH THC cream to put on my face to quiet the pain and it’s helping. Do not get CBD tincture with alcohol in it as it tastes terrible and burns when u put under tongue and it will add more misery to ur situation. You can buy high-end CBD products over the counter at a dispensary, but I would get ur medical marijuana license as a backup incase the CBD without THC doesn’t work then you can purchase the one with THC in it but you will need the license to do that. It takes about a month of faithfully using the CBD OIL for it to kick in. I’m happy with results so far. I’m taking myself out of the mainstream medical protocol cuz it ruins the rest of ur body and I am otherwise healthy at 61.
lorind40875 renee45869
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lorind40875 renee45869
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renee45869 lorind40875
Posted
Looks like the CBD has stopped working. Refer to my previous post. Was going well with it since July. But as of two months ago, my eyeball is swollen, red, very painful. Still taking CBD oil though. Haven’t lost any vision. Am still using steroid drops too. The CBD and the steroid drops have stopped working. This monster wants my eye!!! I’ve been icing it which helps a bit. By the way, if you have to ice ur eye, buy a product called
BooBoo Buddies. They get cold but don’t freeze up and they conform to ur eye and the don’t hurt when u put them over ur eye. They only come in kid designs as they are meant to for little kids booboos.
im getting discouraged with this disease!
carole30337 Jole
Posted
I had a flare up 2 days ago and had acupuncture yesterday, 90% better today without increasing my steroids which I usually have to do. Delighted about that.
To be honest I have a treatment about every 10 days or so and this one yesterday was an extra specifically focused on my eyes and immune system. I can highly recommend it, but choose an acupuncturist that has been trained in Chinese acupuncture and is registered with the British Acupuncture Council as they go through 3 or 4 years training. Hope your treatment works for you.
lorind40875 Jole
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Well .. I'm with you... started taking supplements bilberry. Cinnamon.. tumeric.. they have stopped for now.. I'm not sure if this is why it has gone away. I still have RA. High readings..
kay57684 Jole
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I have had posterior scleritis for 13 years, mostly in left eye. Cellcept (generic) keeps it under control pretty well. I've been able to cut back to 3 mls (liquid). I will have to take this the rest of my lifeGood luck--be careful!
Maria_Anna_1 Jole
Posted
This is my first time posting on here . I also have posterior scleritis . I am wondering does anybody else have severe dry eye as a result of the scleritis ? Thanks