Vasculitis UK
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Cyclophosphamide Cycle 6, and 4 more appointments done and progress

Last week was a good week, completing 4 appointments at UHCW. Had some good news that the blood supply to my organs is good from the aorta arterialgram performed, which is fabulous.

I have also seen some return of motor function to one of the nerves in my right hand damaged, which is amazing, and really helps with finer dexterity things that I have been clumsy with or struggled (ulnar nerve function, so think turning a key in a lock, gripping and turning a can opener, zips, buttons). The joint ache, GI ache and testicular pain are abating. the raging sweat flushes are dissipating although not at night. And the fatigue has eased a little. Seems like the treatment is starting to work :)

The urologist is fairly satisfied that the protein and leukocytes in my urine are as a result of my cyclophosphamide, and that my testicular pain is as a result of PAN. The increased urgency to urinate and increased overnight frequently are also being associated with cyclophospamide, and not any sort of PAN related autonomic neuropathy. After a rummage and a prostrate check (ouch), I got a course of ciproflaxcin to add to the current drug load "just in case there are any infections, it's hard to tell when your white cell count is is so low".

My new rheumatologist is also engaging another colleague at UHCW who I will see in 3 weeks to bring the consultant count up to 6 in my team now. I think they are sharing the experience of this rare condition. I've been told got another 4 months of cyclophoasphamide treatment ahread, but they appear pleased with all my blood results, and ESR and C-RP have now bottomed out nicely.

Elsewhere, my complaint to UHCW regarding the lancing of my radial nerve during cannulation must have landed; I received some brisk service yesterday but not a lot of eye contact. Today is the usual post pulse day; come down from the Methyl Pred, tired and washed out with a nagging headache and a grumbling belly. However, progress is all good news.

1 Reply

Really pleased to hear that Wellsie.

Looks like things are looking up.


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