[josimadera]

#1059738

I know they attack the thyroid and the eyes, but do Graves’ auto-antibodies do any other harm?

I’m asking because I have a severe and persistent case of TED (after a TTE – so that part of Graves’ no longer applies, 3 orbital decompressions, no more bone to remove, still have flare-ups, swelling and muscle stiffness), and I also have lupus. Trying to figure out which disease is doing what, or if there are other auto-immune diseases present has become significant to saving my eyesight as I’ve now also had radiation and they are considering me for rituximab.

I’m trying to sort it all out for myself, because my doctors keep passing me around. The eye docs said rheumatology has to prescribe and monitor the administration of rituximab, then today rheumatalogy said they considered rituxmiab for Graves’ to be experimental and said that endecrinology should be in charge and making that decision/follow-up.

All I know is that I fear going blind if I don’t get remission. I keep having episodes of more swelling and there’s nowhere for my optic nerve to hide. Addiotionally, I’m back on prednisone, and that helps, but I cannot have strabissmis surgery (for severe deviation) unless there is no active disease.

So if anyone has a resource regarding, specifically, the auto-immune effects on the body of Graves’ that would be awesome.

[Kimberly]

#1177187

Hello – The primary impacts that researchers are aware of is the thyroid, the cells and tissues behind the eyes, and the skin on the front of the shin. TSH receptors (the target for the Graves’ antibodies) have been identified in other tissues such as brain, bone, and fat tissue, but to my knowledge, the impact of this has not been studied. Here’s an article from 2009 that talks about the placement of TSH receptors:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://joe.endocrinology-journals.org/content/204/1/13.full

Unfortunately, with multiple autoimmune diseases, it can be a real challenge to sort out which disease is causing which symptoms.

Rituximab is indeed in testing mode for thyroid eye disease, although it is FDA approved for certain types of leukemia and lymphoma. This is a study out of the Mayo Clinic that says it’s currently recruiting, and I know that trials have also been done out of University of Michigan Kellogg Eye Center.

http://clinicaltrials.gov/ct2/show/NCT00595335?term=thyroid&cond=thyroid+eye+disease&rank=11

Obviously, any treatment option has risks that you need to understand in advance — *especially* one that is still in the testing phase – but it might be worth contacting the institutions above if you can’t get your current medical team to agree on a protocol.

A final note — although strabismus surgery to correct double vision is deferred until there is no active disease, emergency orbital compression to reduce pressure on the optic nerve *can* be done during the active phase if it is necessary to preserve vision. If this is what you are experiencing, I would definitely discuss this with your doctor.

Take care – and please check back to let us know how you are doing!

[josimadera]

#1177188

Thank you for the information – I will be checking out the links. I’ve already had 3 orbital decompressions (2 endoscopic, and one 3-wall bilateral) and there is no more bone to remove. Currently I am taking prednisone at a high dose (80mg/day) as a rescue measure, but I am having every side effect (diabetes even though I’m 110lbs, bone thinning, gastric distress, insomnia, etc).

My eye docs are at their wits end. They thought everything was improving, but the last CT and field test showed another flare-up. I am concerned about losing my vision – not just in the short term, but over the course of the rest of my life (I’m 42).

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