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loffrem09 10-25-2012 01:58 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 10:59 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 12:59 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?

jenlagman22 07-30-2013 01:21 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

Jbrush 02-09-2015 06:26 PM

Re: Discouraged with my orbital pseudotumor/ocular myositis
I too am absolutely discouraged, and distraught, with the progression of my disease. I was diagnosed with orbital pseudotumor/myositis in November 2012 at the age of 42. I have been on a high dose steroid since, had several surgeries, have seen physicians at Bascom Palmer in Miami and Mayo Clinic in Rochester. I have been on CellCept, methotrexate, Humira, Enbrel, Remicade, Rituxan, and have just completed 6 months of chemotherapy. I underwent radiation, retro and peribulbar steroid injections as well as steroid infusion. I lost my job and I'm unable to work. I also lost my license to drive, and now receive services through the division of blind services. As a registered nurse for over 20 years, and a medical malpractice attorney, I am at a loss for words as to why this disease cannot be controlled, or cured.

Jbrush 02-09-2015 06:29 PM

Re: Discouraged with my orbital pseudotumor/ocular myositis
I was on Humira and Enbrel but after a couple of months it didn't show any improvement in my condition. So they stopped it. Might I ask you how long it took before you saw improvement

lovemyyorkie 04-15-2015 10:52 AM

Re: Discouraged with my orbital pseudotumor/ocular myositis
Hi Jbush,

You have been on a lot of different meds and treatment! How are you now? Have any of your docs tried you on Azathioprine (Imuran)?

I have multiple autoimmune issues. I was diagnosed finally October 2014, but symptoms began in September. I'm seeing a neuro-ophthalmologist at Barrow Neurology in Phoenix. At the onset of the symptoms of proptosis and migraine - which occurred after receiving injections of Xolair to treat my chronic urticaria (CU) - I also had severe vertigo and tinnitus, which I'm still dealing with. I saw an otolaryngologist who thinks the chicken pox virus reactivated in my body due to prednisone weakening my immune system - and attacked my vestibular system. I'm in vestibular physical therapy right now for the vertigo. The CU started December of '12, and I was getting DepoMedrol shots about 4 times a year, and then the three months before diagnosis of orbital pseudotumor I was taking oral prednisone once per month for the CU. So who knows how long the pseudotumor was developing as the prednisone was most likely keeping it under control for a while.

Initially I was put on 80 mgs. Of prednisone and the migraine pain subsided, but I could barely hear - the tinnitus was overwhelming. I also have had auras ongoing and saw a neuromuscular specialist who wants to do an MRA to take a look at the vascular system of my brain as I had ataxia and palsy of my face at the onset of the pseudotumor, which pretty much have resolved. But I'm still having a hard time processing, finding the right words sometimes.

I've had a lot of pain due to my lack of mobility, and have felt worse now that I'm down to 5/10 mgs. of prednisone on alternating days along with 100 mgs. Of azathioprine, which my Neuro said was the only treatment. I didn't have a biopsy as I didn't have insurance at the onset but have it now. I've had three MRIs, showing the prednisone has suppressed regrowth of the mass. The neuro-ophthalmologist who is managing my condition did not mention myositis in her report. I had 19 autoimmune tests, all negative except atypical results on pANCA, which is not specific for a diagnosis of Wegener's or microscopic polyangitis, according to the lab report.

I had a real hard time when I started the Aza for a out a month- stomach pain where I could only eat soup. I lost a few pounds. My neuro's nurse basically said too bad. This is the treatment! I'm very thin, and haven't gained weight like most prednisone users do. Now my hair is really coming out. I can see my scalp. It's fine but has always been really thick. It's dry and brittle. I'm depressed also and taking Lexapro due to this health nightmare.

I can't take NSAIDs due to the CU as I break out in hives from them, but Tylenol isn't enough for my body pain. So off and on I've been prescribed hydrocodone 5/325, which doesn't do much. The physical therapy is helping but I really need it every day which I can't afford. The hives are just now returning, although I've had a few since September, but the prednisone and Xolair suppressed them mostly all this time.

Your feedback is appreciated!

I can't drive due to the vertigo but I'm hopeful will be able to soon. My eyesight is blurry but tests normal. I get auras from light or movement, but may be able to use low dose blood pressure meds to control them once we do the MRA. I have normal blood pressure.

So basically I want off Azathioprine but am told I will have to increase to 150, and stay on it for a year, and will be off prednisone soon. I'm sick of all these meds, of doctors and my body. Oh, I'm 50, and was controlling my fibromyalgia with Tylenol and exercise.

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