Popped in to see my rheumy today, who is happy that the current cyclophosphamide infusion regime has me under control. Bloods good with symptoms now only grumbling sporadically, and confined to extremities (occasional night sweats, joint aches, swollen legs, peripheral nerve cramps). Have had some occasional upper chest pain, so getting dispatched to cardio for a treadmill test, just to be on the safe side.
In the meantime, cyclophosphamide pulses will now move to 6-weekly infusions for 3 months, then onto 8-weekly doses for a further 6 months, subject to review in the summer. the plan is to get me off cyclophosphamide and onto something else by the end of the year, providing I hold. Reducing prednisilone by 2.5mg too with immediate effect as the start of a very long taper to match the changes in infusion timing.
I'm happy with this overall, as it's a small step in the right direction.
I hope you are all enjoying a healthy start to 2014