Revisiting Thyroid Eye Disease (another look at TED)
TED is not this patient’s real name but the acronym as described below. The rights to this photo belong to the company making the treatments described below and in this link: Tepezza
I see a number of patients with Thyroid Eye Disease (TED) as the bulging of the eyes causes high degrees of exposure and related dry eye disease issues. While traditional and advanced dry eye treatments can help with that aspect of this troubling disease, a recent treatment option emerged, called Tepezza. In an physician-spec ad (annotated by me in parenthesis) from a group called MDNB (mdnbupdate@mdnbupdate.com), about this drug:
“TEPEZZA® (teprotumumab‑trbw) has demonstrated proven efficacy for the treatment of TED in clinical studies.1‑3 To help gauge results, the Clinical Activity Score (CAS) is used as a diagnostic tool to identify the signs and symptoms of inflammation characteristic of TED. CAS is a 7‑point composite score, measuring spontaneous orbital pain (unprovoked pain behind and around the eye socket), gaze‑evoked orbital pain (pain caused by otherwise normal eye movements), eyelid swelling, eyelid erythema (redness), conjunctival redness, chemosis (swollen membranes over the white of the eyeball), and inflammation of caruncle or plica (swelling of the membranes at the inner corner of the eye). A lower score indicates fewer symptoms.4
The CAS is a composite score with equal weighting of a number of factors and may be required for treatment approval. However, the factors may not be of equal clinical weight to patients or to physicians treating those patients.
Select Important Safety Information:
TEPEZZA may cause infusion reactions. Infusion reactions have been reported in approximately 4% of patients treated with TEPEZZA. Reported infusion reactions have usually been mild or moderate in severity. Signs and symptoms may include transient increases in blood pressure, feeling hot, tachycardia, dyspnea, headache, and muscular pain.
Patient 2 before treatment
Pretreatment2
Proptosis (the degree of bulging eyes): 24 mm
Diplopia (double vision): 0
CAS: 5
Eyelid swelling
Eyelid erythema
Inflammation of caruncle/plica
Conjunctival redness
Chemosis
After treatment
Posttreatment (Week 24)2
Proptosis: 19 mm
Diplopia: 0
CAS: 1
Eyelid swelling
Patient 5 Before treatment
Pretreatment 5
Proptosis: 25 mm
Diplopia (double vision): 3
CAS: 5
Spontaneous orbital (eye socket) pain
Gaze-evoked (looking around) orbital pain
Conjunctival redness
Eyelid swelling
Eyelid erythema (redness)
After treatment
Posttreatment (Week 24) 5
Proptosis: 21 mm
Diplopia: 0
CAS: 0
No inflammatory signs and symptoms
Individual results may vary.
Both patients were treated with TEPEZZA in a clinical trial.
Both patients completed a full course (8 infusions) of treatment with TEPEZZA.
Both results shown are with no surgical intervention.
Help get your patient started on TEPEZZA
TEPEZZA is the first and only FDA‑approved treatment for Thyroid Eye Disease (TED)1,6, regardless of TED activity or duration. Review these steps for starting your appropriate patients on TEPEZZA here.”
_______________________________________________________________________________________
These results are compelling (while marketing will always showcase their best before and afters, I believe the majority of treated patients experience real results), so this sounds like really good news, and I think it is - as I mentioned in my earlier post on this topic here: https://www.eyethera.com/blog/8lemgnwt0bqqd15fmqr9ljrkdfe420. However, in various meetings I had with experts in San Francisco at the American Academy of Ophthalmology event 2 weeks ago, it appears that the effects are prone to “wearing off” - in as little as a year and a half. Retreatment can be done, and so far, appears to still be effective. Since it is such a novel and new medication, we are still learning about it – including (as I mentioned in my earlier post) its ability to cause permanent hearing loss in some individuals. Fortunately, this side effect appears relatively rare and monitoring hearing may give early clues that can lead to discontinuation before hearing is fully lost or steer us away from using this particular treatment in patients who already suffer from severe hearing loss.
One of the bigger problems is the cost, as a single course of typically 8 infusions can run into the hundreds of thousands of dollars (I heard as much as $340,000 from one expert and costs can vary greatly from region to region). This is mostly borne by insurance companies and is partly due to the cost of how it is given – requiring specialized staff to administer intravenous infusions (usually at “infusion centers”). The company is investigating allowing patients to give the medication below the skin in small injections - like a diabetic giving themselves insulin, as this method appears to be safe and effective in limited trials. Ultimately these costs filter down to everyone covered under these insurance policies, which can drive up costs for all – so I’m glad there may be a cost-effective alternative. Of interest was statements made by these experts that the age-old treatments, including oral steroids and radiation therapy, can offer similar benefits that appear to be more durable, so if Tepezza isn’t available to some, or eventually proves ineffective for many, then the older treatments are still likely to be of benefit. More encouraging was that a number of other “biologic” medications are being investigated for treating TED - which means more options may soon be available (and hopefully this will drive costs down and increase access).
From current clinical experience, many will be spared expensive, painful and potentially risky surgeries to decompress eyes by removing bone and the soft tissues swollen behind the eyes - by this new medication – so having a medical treatment that also avoids steroid and radiation side effects is still a very welcome addition to our medical treatment options!
To schedule an appointment with Dr. Jaccoma, call Excellent Vision at either of these two dry eye offices:
(1) 155 Griffin Rd, Portsmouth, NH 03801 (603) 574-2020
(2) 3 Woodland Rd, STE 112 Stoneham, MA 02180 (near Boston) (781) 321-6463