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loffrem09 10-25-2012 02:58 PM

Discouraged with my orbital pseudotumor/ocular myositis
I was diagnosed back in May with an orbital pseudotumor. My doctor started me out on 120mg a day of prednisone and i have been gradually trying to reduced the dosage. I am now on 40mg of prednisone and have had (5) steroid infusions of 1G each back in june bringing my total dosage of the pred so far to 14700mg. I am also taking 15mg of methotrexate once a week, but nothing seems to be helping. I recently went to a rheumatologist who did a bunch of blood work looking for the cause of this and got no answers, other than my liver levels aren't good and i have a positive rheumatoid factor of 33....The doctors now want to take me off of the methotrexate and replace that with cellcept. My neurologist is also suggesting IVIG infusions, but my insurance company is denying them saying there isn't any information supporting that it will help my condition. I am just getting frustrated because I want to be off of the steroids, I have had every side effect from them (moon face, stretch marks, weight gain, rash, etc...) but every time i drop my dosage down my eye tends to revert back. I am now dealing with the constant every day pain and the white of my eye is now starting to get large again. I guess i'm just wondering if anyone has had any luck with IVIG infusions and/or cellcept when dealing with this condition. Any advice/words of encouragement would be appreciated.

MizS123 10-26-2012 11:59 AM

Re: Discouraged with my orbital pseudotumor/ocular myositis
I don't know if i have encouraging words but I know exactly what you are going though. I was diagnosed with an orbital pseudo tumor since the beginning of Jan and I am still undergoing treatment. I have been on prednisone since Feb, after my surgery at the end of Jan (a biopsy and a debulking to remove some of the mass). I started at 100mg of prednisone and have attempted to wean off of it but have not been able to get lower than 10mg. The side effects from the steroids are horribleÖ I think I have all the rare side effects that I have been reading about, to add to the moon face Iíve gained 60lbs, my skin has gotten lighter and is super sensitive I bruise very easily, stretch marks, about half of my hair has fallen out, and Iím retaining water like crazy so my legs and feet are swollen. I had to get prescribed water pills to keep the swelling down. My rheumatologist even tried to substitute the prednisone for methotrexate but it was not effective. Since several attempts to get off the steroids failed, my ophthalmologist referred me to a radiation oncologist. I recently underwent 10 sessions of radiation therapy; my last session ended about 3 weeks ago. Before the radiation, I was on 20mg of prednisone. The oncologist said that my symptoms might get worst before it gets better. So far I have noticed the swelling on my eyelids have gone down and it feels like the mass is shrinking a little. However, I am still on 15mg of prednisone, I tried to wean it down to 10mg but I had a to increase it back up to 15mg when I started to have pain and headaches. The goal of the radiation is to finally get off these meds, Iím hoping and praying that I can because this disease is not fun. I hope I didnít scare you, just thought I would share my story. Now I am patiently watching my eye hoping for some relief!

loffrem09 10-26-2012 01:59 PM

Re: Discouraged with my orbital pseudotumor/ocular myositis
Scare me? No...but your post does make me wonder what exactly my doctors are doing.....i havent had a biopsy or any type of surgery presented to me. At this point ive only gained 10lbs but ive had the rare side effects for awhile...the easy bruising, losing of the hair, ive lost most of my musclw mass and my whole body hurts to the touch...its just doctors did try to swap the pred. For the methotrexate but that didnt work we r now onto another immunosuppressive called cellcept. I wish i could get down to a even a lower dose of the steroids but per my doctors today looks like im stuck at 40mg for atleast 2more months :( .....wondering if/when radiation therapy will ever be suggested to me...did the radiaton help at all?

jen7934 07-30-2013 02:21 PM

Re: Discouraged with my orbital pseudotumor/ocular myositis
hello ... i have an orbital pseudo-tumor it started when i was 18 and i am 32 years old now and im still suffering with it... when i was 18 years old my disease started and the opthalmology give me prednisone and eye drops at that time it works and never come back until now we have been trying to cure my disease since 2011 doctor try to put me on high dose of prednisone 100 mg daily , the same like any body that takes prednisone they know what will happen to them first moon face ... stretch marks , lung problem heart problem, anxiety , joint problem and this are just some side effecs of prednisone for me prednisone is just a cover up it doesnt really cure the disease..... then my doctor try the IV infusion for pain because i am in so much pain everyday ....still it didnt work.... then we try radiation a very bad discision because it just not make my eye worst eye stops moving and the oncology doctor and radiologist told me like what they always say " it will get worst befor it gets better " its been a year now my eye is just barely moving towards the nose , up and down very little but it doesnt want to move on the left ... by the way i am talking about my right eye so my right eye basically stops moving and the irish goes towards the nose like crossed eyed... so the 10 sessions of radiation is done and that when my excruciating pain starts everyday im in the emergency giving me shots of pain medicine then after of months in pain my doctor decided to do and orbital decompression they did it on my right eye so first surgery they remove the wall towards the nose and the remove some parts of the bone at the bottom as well.... i thought finally im going to heal but my doctor told me that this surgery just give the swollen muscle to swell more basically they just give space so it wont get sqeeze to remove the pressure ... then after a week of that surgery the pain goes back and its as painful as ever... so i had an emergency surgery second decompression this time they remove the top part and the left side so basically they remove the bones around my eye... it was successful but the swollen muscle is still swollen then me my opthalmlogy and my rheumatology decided to put me on TNF blocker .... after they put me to this drug my pain is finally gone it still need to take some pain pills but not prednisone anymore .... so for me the best thing that works on my orbital pseudo-tumor before you have a surgery ask your doctor to try TNF blocke first to avoid surgery ..... anyways i hope this help .....thanks

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