[Karen55]

#1060771

I was diagnosed with Graves in 2006 and since have been dealing with Thyroid Eye Disease and possibly ocular Myasthenia Gravis. I was on prednisone for almost 8 years, have had 2 eye muscle surgeries for double vision, ocular decompression surgery and a thyroidectomy.
For about a year, my neuro-ophthomologist has suggested I undergo Rituximab infusions to try to prevent flares and the recurrence of double vision. I have been reluctant, but feel I do need something. Methaltrexate did not work for me. The only research I have found with favorable outcomes was mentioned in the Spring, 2016 GDATF Newsletter. I would be very interested in hearing from anyone who has been on Rituximab and knowing what your results were. Thank you.

[Liz1967]

#1184670

I have not had Rituximab. I know it was studied at the University of Michigan, actually by the surgeon who did my decompressions. In looking through the literature, reviews seem to be mixed, from not helpful to maybe helpful.

Here are two studies. Seems to be no consensus.

http://www.ncbi.nlm.nih.gov/pubmed/25025391

http://www.ncbi.nlm.nih.gov/pubmed/25343233

I personally had intravenous steroids, oral steroids and orbital radiation, in addition to thyroidectomy. I found the orbital radiation stopped the progression of the double vision and the inflammation died down within six months of the TT. I was not too impressed with the steroids.

[Karen55]

#1184671

Thanks, Liz1967. That was very helpful. I found the steroids, both oral and intravenous to be very helpful, but was on them too long and cannot go that route again. No one has mentioned orbital radiation. I will do some research on that.

[Liz1967]

#1184672

Couple of studies. The first shows diplopia reduction pre decompression, which is what I had. Not sure if radiation can be done post muscle surgery though. The second shows radiation combined with steroids.

http://www.ncbi.nlm.nih.gov/pubmed/27542927

http://www.ncbi.nlm.nih.gov/pubmed/26876240

[Kimberly]

#1184673

Hello – Hopefully, you will get some responses here from those who have tried Rituximab.

And perhaps in the future, researchers will sort out the conflicting studies and figure out who will get the best results with Rituximab – looking at age, time since diagnosis, smoking status, etc..

[snelsen]

#1184674

I had Rituximab. Saw no difference. Had the same experience with steroids. They helped, both oral and IV, but they are a vision saving intervention. We can’t stay on them. Also had methyltrexate, with no change.

The complexity of myasthenia gravis sure is another confounding variable for you to deal with!
Shirley

[WillQ]

#1184675

snelsen wrote:

I had Rituximab. Saw no difference. Had the same experience with steroids. They helped, both oral and IV, but they are a vision saving intervention. We can’t stay on them. Also had methyltrexate, with no change.

The complexity of myasthenia gravis sure is another confounding variable for you to deal with!
Shirley

Oh that’s a shame. I agree with you about steroids too. You can’t stay on them for too long even though they work.

[Ellen_B]

#1184676

Liz 1967 and Karen 55,
I am interested in your comments (Liz 1967 and Karen 55’s) on orbital radiation. I know very little about it and would like to learn more. Recently I spoke to a Graves’ patient on the subject. This patient has had multiple eye surgeries over the years and is very familiar with TED and treatments. When I asked about external radiation she said yes, it will shrink muscles. She said, however, it is best to have it done during the hot phase because it will do a better job of shrinking the muscles. The two studies with orbital radiation that you (Liz 1967) brought to our attention showed successful out comes–but both were done on subjects who had active Graves’ Orbitopathy. Is it any kind of choice for patients in the inactive phase?

[Liz1967]

#1184677

This is from March 2002 Thyroid journal. Not much to be found about inactive ophthalmopathy except that radiation is not very effective. I believe it should be done within six months of onset of TED. I was a bit past that window by two months but still saw positive results. I know a Graves patient who had bilateral decompressions to stop optic neuropathy, which did not help. She then had orbital rafiation which did stop the neuropathy. I had it hoping to stop diplopia progression, which it did, but did not reverse it. Maybe if I had it sooner, it would have. Docs here were not recommending it so I traveled to Emory in Atlanta. I was determined, as another poster said, to wrestle this thing to the ground! I am so happy to feel normal and after my last eye surgery, i see 20/20, single vision except in extreme left and right gaze. One eyelid a little lower than other one but look otherwise normal and eyes a bit dry, but other than that, I am done with this nasty disease. Finally.

Here is the article:

Orbital radiotherapy is a well-established method of treatment for severe Graves’ ophthalmopathy, because of its anti-inflammatory and locally immunosuppressive effects. It has been used for 60 years. Conventional external x-ray and cobalt therapy have been abandoned, and most groups now use supervoltage linear accelerators (4-6 MeV). Cumulative doses may vary, but in most studies a cumulative dose of 20 Gy delivered over 2 weeks was utilized. Successful outcome depends on the selection of patients, because recent onset, active ophthalmopathy is much more favorably affected than longstanding, inactive disease. Inflammatory signs, recent onset eye muscle dysfunction, and optic neuropathy respond well to orbital radiotherapy, while proptosis and longstanding eye muscle restriction respond poorly. Overall, favorable responses have been reported, with few exceptions, in approximately 60% of cases. Combination of irradiation with high-dose systemic glucocorticoids provides better results than either treatment alone. Orbital radiotherapy is well tolerated and safe. Preexisting retinopathy (e.g., in patients with diabetes) is a contraindication to this treatment for the risk of further retinal damage. No case of radiation-induced tumors has so far been described after orbital radiotherapy for Graves’ ophthalmopathy.

[Ellen_B]

#1184678

Thank you so much for doing all that research and so quickly. You have found a great deal of information from a good source. The article you found tells us who it is likely to work for and who not. Now we know how it worked in your particular case too.
Best of all I liked hearing your words “I am feeling normal now.” I am sure a great deal of credit for your feeling normal should be given to the surgeon but a lot of credit should go to you for the work you had to do to find a surgeon who could do it.

[snelsen]

#1184679

This is about orbital radiation. I refused it, because I realized that there could be another time in my life when that general area might need radiation. Like two breast cancers, and a small tumor in my mouth. But, of course I knew none of that then. I am not a big fan of radiation. I did have it for my most serious breast cancer and had very painful, weeping sores on my back from the amount that was given. To each his/her own. That was my experience.

[mojon]

#1184680

Karen,

I have GD with TED. Onset Dec 2015. I got steroids, including IV. My cancer doc suggested Rituxamab as he used it everyday, and it might help. He gave me a copy of the Michigan study. Mine was an off-label use. Eventually the company that makes it, Genentech did come back and replaced my 2 doses that I paid out-of-pocket $5,500 each. It’s hard for me to say what the Rituxamab did, versus the element of time, progression of the disease, and the preceding IV steroids. But what happened in my condition was the swelling went down, but I developed double-vision, which is still with me now. Of course I was hoping Rituxamab would fix everything, but it didn’t. I think it might’ve helped bring the swelling down (and the antibody attacking of my eye muscles). I’m getting close to 1 year since the onset and am talking with a doc who does orbit decompression about starting that before too long. I hope that helps, and I hope that your docs find the best solution for your situation.

Jon

[Author]

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