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Old 02-10-2010, 02:07 PM   #1
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maxinecole HB User
orbital myositis

i am so fead up i have suffered with what they call orbital myositis and been on steriod for three year with a two day break, i just dont know what to do any more ,now they say i have to come off steriods as they could be causing more damage to the rest of my body i have had radiotherpy for 2 week everyday that didnt work antiamune drugs and the steriods from 5mg to 80mg daily.im at the end of my tether what is this myositis with all them toxic treatments it dosent want to gocan any one help or even understand

 
Old 02-27-2010, 09:37 AM   #2
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Re: orbital myositis

Orbital myositis is basically an infection of the extraocular muscles of your eyes. I can understand your frustration. <edited>

Last edited by mod-anon; 02-27-2010 at 01:05 PM. Reason: Please do not post commercial websites. Please read and follow the posting rules.

 
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Old 06-16-2010, 01:03 PM   #3
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Re: orbital myositis

Hiya,

I was diagnosed with orbital myositis in February 2010. I am still on a high dosage of steroids and struggling to lower the dosage without flaring up. I have now been put on Mycophenolate Mofetil (immune suppressant) to help me come off the steroids. I am already so frustrated and I have had it less than 6 months! I have found little information on this condition and I am really struggling with the side effects of the medicines.
Like a friend commented: I have a junky eye that might need to go to rehab

Please let me know how you are getting on even if just to let off some steam.

 
Old 08-06-2010, 01:18 AM   #4
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Re: orbital myositis

I'm from Barcelona. I have OM since 2001. Although it seems impossible, you will be able to live with this desease. I'll give you some advises based on my experiencie.
First: avoid excess of steroids. When it doesn't work at the beggining, seems that doesn't work at all. Mycofenolato Mofetil is better more. You will not feel side effects, you will avoid cushing syndorme (caused by steroids) and cataracts.
Second: OM is caused by autoinmune reaction. So, there is not known cause yet. But if you smoke, give it up. Avoid polluted enviroments, and chemical products (as cleaning agents). Avoid alcohol. My experience establish that alcohol increase the swelling of tissues.
Third: This desease is NOT forever. Although there is no cure. One day, your flare ups will be less strong, and your eye condition will stabilize.

I also had radiotherapy and did not work at all. Mycofenolato is the only that seems to stop partially Orbital Myositis.

sorry my bad english, and a big hug to everyone with this condition.

 
Old 10-05-2011, 07:07 AM   #5
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Re: orbital myositis

Thanks for the post and advice. I was diagnosed in June and am not having any luck with Steroids so I am now starting Methotrexate.

 
Old 10-10-2011, 12:25 PM   #6
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Re: orbital myositis

Quote:
Originally Posted by Rfweiss View Post
Thanks for the post and advice. I was diagnosed in June and am not having any luck with Steroids so I am now starting Methotrexate.
hi threr i have been on methotrexate for the last 6 to 8 months on and off, lot of sickness feeling i take folic acid every day and that seems to simer it down but since methotrexate i have been off steriods 3 months it has taken 4 years to get off them but fingers crossed they are going to drop thr steriods from 20mg to what i dont know but good luck fingers crossed for u

 
Old 10-10-2011, 07:53 PM   #7
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Re: orbital myositis

Question for you, do you feel sick all the time? I am feeling sick and achy and haven't felt good since Sept. I don't know if it is from the prednisone or OM. How do you feel?

 
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