Re: TED Elaine or anyone??

[Guest guest]

In a message dated 6/7/2003 1:06:18 PM Central Daylight Time,

daisyelaine@... writes:

> In external beam radiotherapy, you have a series of treatments where a

> low-dose localized beam of radiation targets orbital tissue, destroying the

> lymphocytes that are aggregated in the orbital tissue. The benefits persist

> for about

> 6 months after the treatment is complete. Eye muscle restriction is

> frequently

> improved as more room becomes available in the orbital cavity.

>

>

Are there any side effects that you know of from the radiation treatment?

Out of work for any period of time? Has anyone here had the orbital radiation

treatment?

You say the effect lasts about six months. Can you just keep doing it twice

a year?

Thank you in advance. I go to the eye doc this afternoon and will see what

he says about options too.

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treating TED with

prednisone.

If doesn't work, considering other options (surgical).

[Guest guest]

Hi,

There is a slight risk of later developing retinopathy or cataracts from

orbital radiotherapy and it can cause transient worsening of soft-tissue

inflammation and loss of hair at the temples. Retinopathy is extremely rare and

primarily occurs in people with diabetes who are already at risk for this.

Cataracts,

while rare, are more likely to develop in elderly patients.

I haven't heard of repeating the protocol because the treatments are given

over 10 weeks and then you see effects for up to 6 months. By then, most cases

of active GO should have resolved.

One long-term study by S. D. Marques and colleagues involving 453 patients

concluded that this therapy is safe and effective, and the overall response rate

was 96 % with 98% patient satisfaction.

If youd doctor is opposed to radiotherapy, other immunosuppressants can also

be used. Colcichine is currently being studied, and pentoxyfylline has been

shown to reduce soft-tissue inflammation, but not proptosis or ophthalmoplegia.

Best to you, Elaine