I wanted to share my experience when I tested positive for TB in my lemtrada screening in December as I couldn’t really find any info on here about it.
The main frustrating thing was how it delayed lemtrada… I was unable to walk more than a few meters when I went for my initial screening so I was eager to start treatment asap!
My positive TB test meant a referral to the respiratory team, which initially wasn’t prioritised and the appt was scheduled for March (this was mid december). I wasn’t happy about this so I phoned the consultant’s secretary… who was so helpful and couldn’t understand the delay as there were appointments in January, so we rebooked for mid Jan. The consultant explained that the test shows I may have been exposed to TB at some point in my life but doesn’t mean that I actually have it. The test is more of an indicator of the possibility of developing TB when immuno-suppressed which is what lemtrada does. I had a 20% chance of developing TB following lemtrada so am on a 3 month course of antibiotics to prevent this. I know that they don’t always treat people with a positive result however. I’ve been allowed to start lemtrada 4 weeks after beginning the antibiotics now. My main advice would be to persist in pushing appointments through- which doesn’t come naturally to me at all but if I didn’t I’d be none the wiser now…
I am now beginning lemtrada next Monday.. 2 yeas since my first episode, 13 months since diagnosis and 7 months since my consultant recommended lemtrada.
I hope this helps someone in a similar situation, and am more than happy to answer anyone’s questions if you have any 🙂
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