[Ski]

#1071367

Wow, this came on quickly for you, and in such a severe form! I’m glad you’ve found some relief. At our most recent conference, they spoke about the steroids and also directed radiation (not like RAI, just for those reading ~ it’s directed beams into the orbit of the eye), and told us that for patients who are having success using steroids, directed radiation is likely to help, and using both together can minimize the need for either, if you see what I mean. You can use less steroids if you are also doing directed radiation, and you can limit the directed radiation if you’re also taking steroids.

There are other new ways to treat with steroids as well ~ the doctors spoke to us about a method being used experimentally (I believe) in which they inject steroids into the fluid behind the eyes. Not INTO the eyes (ohhh, scary), but into the fluid behind the eyes (they go between your eye and orbital bone, so really no injection "point"). Bathes all the tissues in steroids, and seems to provide some real relief. You may want to ask about that.

It appears as though your doctors are on top of your condition, and that’s good. I know it’s hard to wait it out, but it’s really the safest thing. Doing too much while your disease is active can remove options for correcting your issues later.

[cmpopov12]

#1071368

Thank you so much for the information. I will certainly ask my Endocrinologist about the injections – he seems to be very informed and open to suggestion in his quest to help me with this disease. I look forward to my membership as a positive tool in my recovery. Thank you again.

[cmpopov12]

#1019395

Hello, I am a new member. I just returned today from my 35th Doctor visit in Boston since December of 2008. 30 years ago I had RAI treatment for hyperactive thyroid and have been on HRT with some issues over the years but nothing as significant as being diagnosed with Graves Opthalmopathy in December 2008 with Proptosis in both eyes. I have had IV Steriod treatments – Orbital Decompression Surgery in both eyes as well as Optic Nerve Decompression – emergency treatment to save my vision which was 20/300!! at the time of surgery. My Endocrinologist and Surgeon and Opthamologist are now discussing waiting until the inflammation abates to perform another decompression surgery on each eye and then move on to muscle surgery to correct the position of the eyes and decrease the diplopia. Oh, and let me not forget the double vision that is a result of the surgeries that won’t be addressed until all else is resolved. Taking the entire process in small doses the first step is to get off steriods (15mg) which I am having trouble doing. Each time I try the inflammation returns – I recently found a product called Flavay on-line that has been used in France since 1950 and proven successful in addressing free radicals and inflammation – this is a must read for anyone with GED. I started taking it 5 days ago and have noticed a significant decrease in the inflammation in my eyes so maybe I will be successful in beating this disease into remission and avoid radiation treatment.
I must admit that it feels good to vent in this forum as I am sure my husband is close to his tolerance limit. He has assured me that no matter what happens he will stop at nothing to be sure that I am happy with the outcome – sparing no expense.
I am blessed!

[lakeview]

#1071369

Hi Thanks for your posting. Can you keep us updated on how flavay is working for you. I also have TED and I am interested in alternative therapies. I am currently going to a naturopathic doctor and I am taking lots of omega oil and an antinflammatory called Kaprex. So far my doctor has suggested nothing so at least I feel I am doing something now.
Lakeview

[cmpopov12]

#1071370

Dear Lakeview, I have been taking Flavay for just a week now and I have noticed a significant decrease in the inflammation of my eyelids and the watery feeling in my eyes has also decreased. I am presently trying to decrease the Prednisone from 20mg to 15 then to 10 and then off – I was on 60-80 mg prior to IV sterioid treatments. The IV treatments enabled me to decrease the steriod but I haven’t been able to get off it completely. Until I can get off my Doctors will not consider doing any other surgery to correct the Proptosis or the Diplopia. I am in a holding pattern right now and I too, as evidenced by the Flavay, will try alternative methods to beat this disease. Although my endocrinologist is not too keen on using a product that has not been subject to a medical study he is tolerant. Also, I am taking 6,000mg of Flax seed oil daily which also is helpful. My Doctor did tell me about the Flax – I get it from a company called "Swanson" that you can access on-line. I also have cut sugar and saturated fats from my diet that can impact the inflammation negataively – I notice it immediately when I indulge – I get the inflammation back in the eyes. I hope some of this information is helpful to you.

[lakeview]

#1071371

Thanks for the information on Flavay.. I am going to ask my naturopath about it.
I am taking flax seed ground up… plus liquid omega oils, Kaprex, acidophilus, and also some homeopathic drops, vitamin D, C and plenty of whey protein… My main benefit so far is that my blurry vision has cleared up. So I am very relieved.. I have only been doing this for 2 weeks.. so we will see how it goes..

[shop_momma]

#1071372

Hi All, Just wanted to post that my eye doctor did mention the steroid injection in the eye region as a treatment, but not for me as he says my current eye situation is not severe enough and ALL treatments come with some uncontrollable side effects (and he said he is a control freak so he doesn’t like to use them unless really necessary). I wrote about my recurrence/flare up of my TED one week after orbital decompression surgery!!! Ugh!!! Search for that post if you are interested in the details. What I have learned for ANYONE with an autoimmune disease you should always be treated with steroids following ANY surgery…in my case I was treated with steroids but I am one of the rare cases that still had a flare up….For the next eye I will be treated prior to surgery also…. But take note everyone that you should bring that up to your doctor as a question before you have the surgery (or any surgery for that matter).

Additionally, the second dose of prednisone did help to lesson the symptoms and he now wants me to take Ibuprofen 2x day for a while….said I should be seeing gradual improvement every few days….lets hope so.

I too am going to see my "holistic" doctor….she is a licensed M.D. who practices a combo or Eastern/Western and Holistic medicine and she said I should be on anti-inflamatories so I will see her next week and I will post her recommendations after I get them…Are you guys really seeing improvement in the eye inflamation using the natural supplements?? I am definitely going to ask her about the Flavay and I will post her response….I hope she knows something about it.

Hang in there guys….we can get through this (I hope!!)

Lisa

[cmpopov12]

#1071373

I spoke with my endocrinologist yesterday who schooled and practiced in Italy before coming to Mass Eye and Ear. He is very open minded and a wonderful Doctor. If anyone in the Boston area is interested in his info I would be glad to provide it. We talked about the steriod injections into the orbits and he stated that it was "old therapy" and they have discontinued doing this because of the lack of proven positive results. Then he said, "Wow, just think about having a needle so close to the eye!" I don’t think I am a candidate though because I had to have both optic nerves decompressed – which strips the protective bone from them. My treatment – having decompression surgery to save my vision – was done while I was very much in the active phase of GED, even though I had IV steroid treatments prior to surgery. My prednisone has been reduced from 80 to 15 mg because of the IV and surgeries, however, my proptosis (bulging) is still prevalent and the double vision is extreme. My Doctors are suggesting that I "wait out" the disease and then have muscle correction surgery and further decompression if needed. I have read that this can take months and sometimes years and I cannot stay looking like this. Has anyone had muscle correction surgery before the disease is in remission? I know I would need to have it again down the road after the disease abates but honestly how can Doctors just send you home to wait it out.

[Ski]

#1071374

They send you home to wait it out because they’ve seen the problems that can occur by surgically correcting too soon. Until things are stable, there is no way to know if they’re taking the right amount of tissue, plus surgery can stimulate the antibodies to begin yet another attack, which would result in another phase of swelling with no bone left to remove. Then the proptosis would be pretty much lifelong. The natural progression of the disease takes anywhere from 1 year to 3 years, and after it’s all over, many patients have seen improvements naturally. Not "back to normal" improvements, but if surgery were performed prior to this stage, they may either have eyes that sink INTO their head, or they can lack the skin necessary to look right, or another attack could create circumstances that are literally impossible to correct.

The only reason surgery is ever done prior to stabilization is if the optic nerve is in danger, and then (as you know) they do enough to save the optic nerve (and with it, your sight), then you must wait.

I know it’s hard. Many here have been through it. Everyone who has experienced proptosis due to TED is given the same advice. We also know some people who have had surgery too early, and now are paying the price. It can mean many more surgeries, grafts from elsewhere in the body, etc. etc., when just waiting a little while could have made all of the corrections far simpler.

[cmpopov12]

#1071375

Thanks for the information. With every passing day I learn something new about this disease, I now understand that it was not to prudent for me to have decreased my prednisone (under my Doctor’s advice) in his effort to get me off of it – which let more inflammation increase, causing more proptosis. The proptosis is not drastic, I am much improved from the full blown stage that I was in in January but, I was better right after surgery when the decompression was done and I was on a highter dose of steroid. I am certainly going to rethink taking any action at all for the time being and be cautious about weaning from the steroids to minimize the proptosis that I will have to live with. Thanks for the insight into the flare-up that can occur from any additional surgery at this time. I guess I was just hopeful that they would be able to adjust the position of my left eye that is pulled inward while I waited out the disease process. Cheryl

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