Just back from hepatology clinic. Mixed news. Bloods still doing OK, and phosphate has improved the cramps, so am to continue with that for a few weeks. However, they flatly refused to reduce azathioprine due to risk of causing a severe flare up. Am only on a lowish dose for my weight anyway, and got the impression that they would rather increase it............so I shut up fast. Had more bloods taken whilst there and if still in range I'm to reduce the steroids to 7.5mg from tomorrow.The feedback regarding feeling less well over the past 3wks, is that it's as a result of the reduction in prednisolone. More specifically, I had been functioning so well due to the high dose of steroids, (ie it was the drugs making me feel well) but actually it will take several more months for my body to recover, so I wasn't really "better" it was just the steroids making me believe that I was. The azathioprine can take several months to "take over" from the steroids. I have been reminded how severely ill I was "just 6wks ago" and advised to rest and give my body a chance to recover. I should apparently only be doing what I "have to do" otherwise resting! I did point out I have 5 dogs, 2 donkeys a pony and a pet care business.............it didn't wash. So from Wednesday (too busy tomorrow) I will take heed.
The right upper quadrant discomfort is due to continued swelling of the liver which (due to how severely ill I was) will take months to settle and is quite normal..........that's OK then.
Hi penny sounds like quite a positive visit to clinic, it's really hard when someone tells you to rest as I think we just want to be normal and do normal day to day things, this is day six for me on the budesonide, not sure how it's going yet but apart from a nightmare off a headache on Friday night no other side effects as yet but as we all know these can creep up on us, am back to checking every little thing again ( colour off urine colour off eyes every time I get an itch I think is this it starting up again) its another 3 weeks until I see consultant I just wish it was sooner, the stress is enough to drive you potty, on a brighter note it sounds great where you live, donkeys, pony, dogs and beautiful Cornwall, this morning it's freezing in Scotland, hope things continue to go well for you and you start to feel good soon x
ReplyDeleteThanks x light covering of snow here this morning . sounds like you are getting there with the budesonide. I followed your nightmare speedy reduction in pred on the forum....thought I had problems! Chin up x
ReplyDelete