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TED questions/Elaine

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Hi, Elaine:

I have a question regarding " hot " stage of TED. In your book you say it

" ...characteristically worsens over an initial period of three to six months,

followed by a lengthy plateau that may last several years. " Does this mean

that it won't get any worse than they are after 6 months and then possibly

stay the same for several years? Also, by taking steroids when the eye

problems first begin, such as double vision looking upwards and sore eyes,

can proptosis be prevented by toning down scarring or are the steroids only

reserved for moderately bad cases?

Thank you for all your help over the past few months.

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Hi ,

Yes, typically the hot phase lasts for 3-6 months although it can last

longer. This is followed by a plateau phase in which the symptoms won't

worsen although fibrosis or scar tissue can form. In many cases, symptoms

resolve during the plateau phase, and during the plateau phase treatment

aimed at the immune system, like steroids or orbital radiotherapy, is not

effective.

Because studies show that the outcome is often the same whether treatment is

used during the active phase or not (and the available treatments have side

effects) treatment is usually withheld unless their are vision threatening

complications or the active phase is particularly progressive. Treatment used

during the active phase addresses the immune system so it can reduce

inflammation and proptosis.

The dilemma though is that the effects of prednisone subside and symptoms

return in full force when the drug is withdrawn. And only about 2/3 of

patients respond to treatment.

Inflammation can also be inhibited by stress reduction, avoiding sugar,

saturated fats and iodine and by adding antioxidant vitamins. Many patients

avoid water, thinking this will reduce symptoms, but this only makes symptoms

worse. The edema is often worsened when dehydration sets in. Take care, Elaine

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Hi ,

Yes, typically the hot phase lasts for 3-6 months although it can last

longer. This is followed by a plateau phase in which the symptoms won't

worsen although fibrosis or scar tissue can form. In many cases, symptoms

resolve during the plateau phase, and during the plateau phase treatment

aimed at the immune system, like steroids or orbital radiotherapy, is not

effective.

Because studies show that the outcome is often the same whether treatment is

used during the active phase or not (and the available treatments have side

effects) treatment is usually withheld unless their are vision threatening

complications or the active phase is particularly progressive. Treatment used

during the active phase addresses the immune system so it can reduce

inflammation and proptosis.

The dilemma though is that the effects of prednisone subside and symptoms

return in full force when the drug is withdrawn. And only about 2/3 of

patients respond to treatment.

Inflammation can also be inhibited by stress reduction, avoiding sugar,

saturated fats and iodine and by adding antioxidant vitamins. Many patients

avoid water, thinking this will reduce symptoms, but this only makes symptoms

worse. The edema is often worsened when dehydration sets in. Take care, Elaine

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