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(2 Posts)
YesQueen Mon 23-Sep-19 21:10:14

Anyone any experience with it? It's being considered for me at the minute

Flossie44 Wed 02-Oct-19 23:23:23

My dd2 had it. She started off at a low dose every month, then the dose was increased and it was given fortnightly. It was a double edged sword for her though sadly. She was allergic to the drug!! So every time she had it, she was exceptionally ill..however in between she had periods of respite from her debilitating symptoms.
Sadly in the end we had to stop. Or should I say, we were told to stop. Dd ended up in HDU for 4 days with breathing problems.

Dd1 is now going to start it. It was a hard decision but she’s a different person and I’m feeling positive that this can and will help her lead a normal life.

At what stage of the process are you and what is it being used to treat?

Wishing you all the best. It’s great that it’s a steroid sparing agent. For us, that was a big factor in our decision to go ahead

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