off biologics because waiting for OP , bad AS flare

[strangetimes]

Posting for friend , forgive me if details sketchy.

She has ankylosing spondylitis ,UC and Crohn's. Needs surgery for stricture, fairly/quite urgent. Has stopped infusions for AS on advice so can be ready for surgery. No date given.

As result now has bad dactylitis in hands and feet .

I'm wondering if she should go back on infusions (though no doubt knowing her luck she'd probably go to bottom of waiting list) and wait either for a date for surgery ( needs 6 weeks notice I think to come off infusions ) or to risk emergency admission when stricture becomes critiCal.

Her quality of life v poor, limited mobility and use of hands. Pain, exhaustion.

Any thoughts ??

[bantam12]

She needs to contact her team as to what they want her to do, they are the only ones who can advise in her complex case. Hope she can get the surgery and treatment soon.

[strangetimes in reply to bantam12]

She has just seen rheumatology consultant and they have written to gastro about new symptoms and need for surgery to allow return to AS treatment.

Just another patient playing the waiting game I guess. She's going to be so unfit when surgery finally carried out -she can no longer go for walks for example . The pain and fatigue means she's now very sedentary.