orbital pseudo tumor

This is probably due to an auto-immune disease called wegener granulomatosis.
I also have an orbital pseudotumor and thats because of this that they discovered that i have wegener disease.
double vision is one of the symptom of wegener.

I know your post is from a couple of years ago, but if you are still around, I would love to get more information on your treatment and/or naturopath. My MD is very progressive and we are trying Vitamin C drips which are helpful, ozone therapy which aggravated my condition, diet, homeopathy, herbs, vitamins, acupuncture, etc. It's only been about 2 1/2 months but I'm going crazy on the prednisone. Thanks for any input you may have. Mary

Wegener granulomatosis is treated with corticosteroids called prednisone to reduce the inflammation and other drugs (immunosuppressant) called Cytoxan, Imuran, Methotrexate, Rituxan, most of these are to move the disease into remission and keep it there (maintenance drugs).

all the info you need to know:  http://www.hopkinsvasculitis.org/types-vasculitis/wegeners-granulomatosis/

This thread has been up for nearly four years but I was wondering if anyone still had the diet. I've been fighting orbital pseudotumor for nearly two years. Prednisone is the only thing that works. Thank you.

hansolo wrote:

hansolo wrote:

Guest wrote:

Hi,
I've suffered from an Orbital Psuedo tumor and been treated with high doses of prednisone to reduce the inflammation. I was told it is an auto- immune disease that they don't know much about. When in doubt and there is inflammation, steriods to the rescue, apparently. Unfortunately, it came back, twice. Each time I weaned from the steriods it would come back within a few months! Sadly, they suggested radiation, but it's not even a tumor, it's inflammation!!! I left western medicine to see what other options were out there. I found a medical doctor/ naturopath. I was put on a seriously restrictive anti-inflammatory diet and a battery of supplements. Two years later, not a single reoccurrence and I feel better than ever. THe diet, it's really not so bad and apparently in general for everyone it reduces cancer risk, arthritis pain, weight gain and a whole slew of other common ailments. Le tme know if your interested I'll give you more detailed information.

My sister is very sick with this orbital pseudo tumor and has been for 1and half years.

Can you please let me know about the diet you mentioned in you notes and name of doctor/naturpath please.

Thanks for your help

I had Orbital PseudoTumor approximately 12 years ago. Hospitalized in UCLA Los Angeles, which treated it with Prednisone which was very effective, but relapsed instantly when stopped prednisone. Transfered to Doheny eye institute USC Los Angeles which treated it very successfuly with Non Steroid Vioxx. Now minor relapse after 12 years. Vioxx off the market. Treated with Non Seroid Celebrex. Insurance refuse to cover medication in the meantime and pay out of pocket. Celebrex seems to stop the inflamation development, but still have minor symptoms. If you are around Los Angeles, go to USC.

I've had pseudotumor for about 6 years. I was on and off prednisone for 2 years and decided to stop using it.

I've had orbital pseudotumor for 6 years; was on prednisone for 2 years, gained significant weight. I've seen nearly 20 doctors of different specialties. I saw a holistic medicine doctor in Chicago 4 years ago, she has given me a diet that generally keeps the inflammation at reduced levels. Basically, the focus is on fruits and vegetables.  No meat, no alcohol, no tobacco, no cheese, no milk, no bread, no caffeine. It sounds awful, but it will make you feel great, and it does appear to reduce the length and severity of my flare ups dramatically.  It used to take 5 -30 days for prednisone to reduce the flare up, this diet reduces it in a day or 2 usually. Typical day for my diet:
Breakfast - hard boiled egg, plain greek yogurt, oatmeal
Snack - almonds - raw, not salted
Snack - apple, carrots/hummus
lunch - salad with Oil based dressing (not ranch)
Snack - more nuts, raw
Dinner - fish, vegetables.  Fish has great anti inflammatory properties.

PS, red meat seems to increase the length and frequency of flare ups. While on the diet, I strictly avoid red meat. As much as I enjoy junk foods, they do appear to cause this disease for me.  If you're looking for diet ideas, just google "anti inflammatory diets", you'll find plenty of ideas.

I first had my pseudo tumor show up as a eraser sized nodule underneath my left eye on my cheekbone. After three weeks, it turned into swollen pocket underneath my eye. I have been under the care of two wonderful doctors at Dean McGee Eye Institute in Oklahoma City but am looking for a lifestyle change so that prednisone is not my long term solution. My first occurrence started July 2011. I had two biopsies to rule out lymphoma and thankfully they were negative but then diagnosed as orbital psuetumor. The prednisone keeps it at bay but the weight gain and side effects (agitation, no sleep) make it just as bad to tolerate. I have been on prednisone for 13mos and had two weeks of daily radiation in November. Before the radiation, a dosage lowering from 15mg to 10 mg would cause an occurrence within 24 hours. I thought I was done with this and three weeks ago as I was down to 2.5mg of prednisone, it came back. Same eye, different place. This one is in between my nose and tear duct. It appeared in nodule form again so they biopsied/extracted it last week and it was back within days. Same result as before... Inflamed tissue/orbital psudeotumor. They raised prednisone to 15mg and it appears to be reducing the past 72 hours. I see where this is going and I'm not staying on the same path. SOMETHING is causing my body to react this way and whatever I'm eating or doing to cause it to feel like its under attack by my left eye needs to stop. From the post above, it appears a strict anti-inflammatory diet is in order. I eat pretty healthy but drink coffee daily and eat cheese at most meals. Not a big meat eater. 

 

Since no one knows what causes this and the docs I've seen believe prednisone is the best approach, I would liketo find a group that I can correspond with who can share what works for them and what doesn't. Is this the best place to do that or should we start a closed Facebook group, etc? If there is a holistic practitioner that anyone recommends, please share their information. Also, the best advice on how to keep weight down and immune system healthy on prednisone would be much appreciated. 

 

I wish everyone the best and hope we can find a better way to deal with this.  Thank you. Heather

Hi. Please let me know where and how to getv trxt. Myblife has been turned upside down. I havent worked in over a year. Double visiin..severe pain. Horrible.

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. Thanks. My name is Peggy.

I have been diagnosed in 2008 with pseudo tumor orbita.

life turned into pain, better say hell.

still on daily 20 mg prednison.

have had it almost....

Please post info on this I have been looking for something like this and it sounds like what I need!

I, too, have been suffering with this for the past few years. The steroids do the trick, in the short term, but it keeps coming back. I'd be interested to hear about your diet and supplements. Open to any suggestions.

 

If you would share your diet and other information that helped you with your Orbital Psuedo turmor, it would really be appreciated.

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My daughter has this and it is affecting her emotionally. I appreciate any information you can give me.

Could you please share your diet? Thanks

Can you give me more detail of the diet that helps you off medication of Orbital Psuedo tumor? I have been on corticortison for more than a year and it recurred every time i tried to wean it off. Thanks.