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MG/ TED Case

  • 1.  MG/ TED Case

    Posted 01-21-2026 11:32

    Hi, was hoping for feedback on this difficult case. Main question is whether anyone has any experience trying Tepezza for patients with MG/ TED overlap.

    66-year-old Caucasian male with onset of diplopia in July 2024, subsequently diagnosed with generalized MG (AChR binding antibody positive 12.60 [0-0.24]).
    MG has been treated with Mestinon (pyridostigmine) now on 60 mg TID, Cellcept (mycophenolate) now on 750 mg BID, prednisone now on 5 mg daily, Rystiggo (rozanolixizumab-noli) infusion (recently received final infusion in course)- no improvement, previously received Vyvgart (efgartigimod alfa-fcab)- no improvement, considering Ultomiris (ravulizumab-cwvz) as next step.
    No history of thymectomy. Of note, on pravastatin 80 mg.
    History of Graves' in remission (per endo), no history of TED. Previously treated with methimazole (off treatment since Feb 2025). TPO positive 68 [0-34], TSI and TRAb normal, currently euthyroid.

    I ordered baseline orbital imaging and findings are suggestive of TED. The read of the CT "Proptotic appearing globes and enlargement of the muscle bellies of the extraocular muscles with fatty attenuation and disproportionate involvement of the inferior and medial rectus muscles. Relative sparing of the anterior tendons. Constellation of findings is nonspecific, but compatible with thyroid associated orbitopathy."

    Clinically he does not appear proptotic or inflamed. He does have orbital pain and obviously diplopia.

    I wonder if, after a washout period since he just finished Rystiggo, whether Tepezza could be considered. I spoke to the medical liason from the drug company this morning and essentially reaffirmed lack of evidence in these types of cases. My main concern would be exacerbating his MG given the possible muscle side effects.

    Thanks for your thoughts,

    Ola Pietraszkiewicz



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  • 2.  RE: MG/ TED Case

    Posted 01-21-2026 13:24
    After the washout period I think it would be reasonable. The most common side effects are hyperglycemia and hearing loss. I have never encountered muscle issues with Teprotumumab. But my experience is limited. 
    Scott Forman, MD





  • 3.  RE: MG/ TED Case

    Posted 01-21-2026 14:00
    I think it is reasonable to try Tepezza. I do treat a good amount and never encountered side effects involving muscles.   

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    Obada Subei, M.D. 
    Chief Executive Officer
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  • 4.  RE: MG/ TED Case

    Posted 01-21-2026 19:13
    Are you utilizing the Tepezza for proptosis? If the patient is asymptomatic, you are exposing them to potential side effects when they are not disturbed. If you are treating them for double vision...Is their Diplopia restrictive or non-restrictive? If it is non-restrictive, that would be the myasthenic component and would not respond. The description of the MRI suggests that this is chronic change in the extraocular muscles, and I am not sure that you are going to offer any benefit  while exposing the patient to potential side-effects of therapy. Furthermore, although data along these lines is lacking, I personally am uncertain about the benefit of Tepezza in the setting of chronic thyroid eye disease where the antibody levels are normal. 

    Matt

    Sent via the Samsung Galaxy S21 5G, an AT&T 5G smartphone






  • 5.  RE: MG/ TED Case

    Posted 01-22-2026 01:19
    I agree with the previous comments regarding the necessity of Tepezza in this case. As I understand it, there were no clinical signs or symptoms of TED, and the suspicion was based solely on MRI findings. If this is indeed the case, Tepezza may not be indicated.

    It would be valuable to review the full clinical examination, including Hertel measurements and tests such as forced duction and the ice test, to better assess the current state of the disease. Reviewing the MRI imaging itself would also be beneficial.

    While Tepezza has proven effective in chronic TED cases, the question of whether it is necessary in this specific instance remains.

    Michael


    --

    Michael Paul M.D

    Eye diseases and Surgery

    Director Emeritus

    Ophthalmic Plastic and Reconstructive Surgery

       ,Orbital and Lacrimal Surgery Service 

    Neuro-Ophthalmology

    Dept  of Ophthalmology

    Edith Wolfson Medical Center

    Holon, Israel

    972-3-5049554

    Fax: 972-3-5018703


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  • 6.  RE: MG/ TED Case

    Posted 01-22-2026 06:38

    I have had a patient that had double vision and positive MG antibodies. Treated with mestinon, steroids and measurements improved some but still symptomatic. I put him in vyvgart and he improved some but still double and it got bigger actually after about 4 rounds of vyvgart . Repeated a scan of the orbit and his muscles were enlarged compared to prior scan. we started him on Tepezza and the double resolved rather quickly. I did not find any issues of Tepezza on the MG and in fact he has gone through 2 rounds of Tepezza due to a flare. We did stop the mg meds about a month before Tepezza started. Good luck with the patient. Let us know how it goes because it will be something seen again. 



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    Jody
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  • 7.  RE: MG/ TED Case

    Posted 01-22-2026 22:54
    Uplizna has been recently approved for MG. I believe most of us have used Rituxan for severe cases of thyroid eye disease prior to FDA approval of Tepezza. I think Uplizna works better and safer than Rituxan in the same class of B cell depletion and anticipate it should treat TED just as well as, if not better than, Rituxan. Uplizna may be a good choice. 

    Charles Rheeman





  • 8.  RE: MG/ TED Case

    Posted 01-21-2026 15:36
    Are his measurements more variable (like MG) or are they more stable and consistent with inferior and medial rectus restriction?






  • 9.  RE: MG/ TED Case

    Posted 01-21-2026 17:31
    If you don't see proptosis clinically, it is likely an over call by radiology. Hertel measurements? Is the muscle enlargement obvious or subtle on the CT scan? What do forced ductions and forced generations show? Ptosis or lid retraction?

    Russ Edwards 

    Russ Edwards





  • 10.  RE: MG/ TED Case

    Posted 01-22-2026 21:07

    Thanks for the feedback. I'm going to see the patient back in a couple weeks for repeat measurements, forced ductions, and Hertel measurements. He really didn't appear proptotic, so I do think that part may be an overcall by radiology. In May 2025 (previous eye exam before seeing me) he had an XT measuring 55. When I saw him 2 weeks ago, he had a RHT of 2 in primary and upgaze, 10 in right gaze and 6 in left gaze. He had a small XT of 2 in primary and down gaze. He doesn't have either ptosis or lid retraction. He does have saccadic/ jerky smooth pursuits. I think his bigger issue is the myasthenia, but I wonder if treatment of TED (albeit chronic) could help him. I'm not convinced, but he is willing to try anything. My main concern is not causing harm. Thanks again and I will keep you posted.

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  • 11.  RE: MG/ TED Case

    Posted 01-23-2026 06:59
    Calling the inferior and medial rectus an "overcall" seems incorrect to me since they are the most commonly involved muscles with tendon sparing seen in Graves' orbitopathy.
    +=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=
    Scott Forman, MD
    Senior Fellow North American Neuro-ophthalmology Society

    Adult and Pediatric Neuro-ophthalmology
    Comprehensive Ophthalmology
    Functional Medicine