Re: relaspe how many times

I'm sorry to hear about your daughter having a flare.

How long was she treated before her meds were completely tapered and how long was she off the medication when she had a relapse? Is she taking other medications?

Do you have a copy of the JDM book "Myositis and You"?

Everyone's experience is different but in the case of my granddaughter, she was treated for five years with very slow tapering. She has been off medication for three years without a relapse. Sometimes tapering too quickly can lead to a flare or relapse because the disease is still silently smoldering.

No way to predict how many relapses a child might have. About 1/3 go into permanent remission, 1/3 have multiple flares and 1/3 may be chronic. The experts believe that early aggressive treatment and remaining on medication until all autoimmune markers are normal will lead to a better chance of permanent remission.

Amanda has blood tests every three months just to check. A relapse can sneak up on you, so for five years or so after remission her doctor recommends this continuous testing. After five years she can probably go to yearly testing.

I hope things get back under control for your daughter soon.

Please keep us posted.