Help! Missed a dose.

[spursfan323]

I started on Infliximab earlier this year. Had my first 4 doses between May and Sept 2020. All appts were booked in for me by the NHS.

I assumed they would book my subsequent doses for me. Turns out this was a misunderstanding as I was supposed to book them in myself.

Long and short of it is my last dose was in Sept and we are now 16+ weeks since then!! I read online doses should be 8 weeks apart!

Have contacted my IBD team but they are slow to respond. In meantime, thought I'd ask here if anyone can advise/reassure what happens in a case like this? Have I messed things up?

 

[CatLover63]

Hello, you're very lucky to have an IBD Team, your symptoms were recognised and managed. A lot of treatments, procedures and non emergency ops have been postponed due to the risk of catching Covid 19 in hospital. It might be best to get vaccinated and immunity first if you are clinically vulnerable.

 

[Jo-mom]

Have you had any increase of symptoms. It is important to get your remicade infusion as soon as possible. Everyone metabolises the drug differently, and dosages vary with people, although 5 mg/8 weeks is standard dose. It is important to maintain certain trough levels of remicade so that antibodies aren't made . Can you make that app't in the meantime and get the soonest possible date. Only a blood test would ascertain if you have proper levels and antibodies, however, that usually is done at the time of your infusion, so you need to get there ASAP.

 

[spursfan323]

Hi Jo,

Yes I have asked for an appt asap, I am praying I don't have the antibodies yet. Can't find any literature online

I haven't been feeling great, wouldn't call it a full blown flare up tho.

 

[Jo-mom]

When my son first started Remicade, he was on the standard dose, but was flaring badly - he had to go in sooner to get an infusion. When they did the levels check, he was near zero. The dose frequency was increased. It happened again - another test, and near zero. His dose was increased. Now almost two years later, his levels are actually too high so now they will drop the dose again. What I am saying is, even though he had near zero levels twice, he did not develop antibodies - so try not to worry. If you can get on a cancellation list - sometimes that happens - and are not picky about your location, you should be able to get an infusion quickly. (We're in Canada - so not sure where you are if it's the same). Keep us posted.