Monday, 2 December 2013
Saw the hepatologist this evening. Bloods in normal range now.......hooray! Can stop phosphate, clotting now normal, and can reduce prednisolone to 5 mg from tomorrow. However, when I said about the nausea and retching, she felt I may be experiencing stomach problems from being on steroids. So now I'm on omeprazole to see if that settles it. If it doesn't, then the cause may be the azathioprine. I also mentioned the hair loss. This, she felt was definitely the azathioprine, and where I had been thinking it was a small price to pay,(I have a lot of hair!) she felt strongly, that as I was going to be on an immunosuppresant for life, then we should try a different one. M and I were quite shocked as we had not expected that response. She offered to change it today, but I couldn't take it in.Changing it will mean increasing the steroids again whilst the change over happens (in effect, going through the last 2 months again but with another drug). I feel like I have spent 2 months getting used to this drug and was prepared to put up with any side effects, but now I don't know what to do. She agreed to let us think about it over the next two weeks. The never ending tiredness is "the main symptom of liver disease" but should improve in time. Now off to research MMP and 6MP to see what wonderful side effects they might give me. Think I will just have to bite the bullet where work is concerned and give it a go in January........however I'm feeling and whatever drug changes are going on. Sick pay barely covers utility bills, and gets stopped in February anyway, and I am not going on disability benefits.
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Hi penny, glad your levels are doing so well but what a nightmare about changing medication, I felt the same way when they changed me from pred to bud I just felt that all those weeks on pred had been a waste off time, I wonder sometimes if the consultants understand how bad the side effects from the medication can be!!!!!!! At least they have left the decision up to you and also gave you time to think about it, I seem to get brain freeze at my appointments and never really take in what she is telling me luckily I take my sister with me for support and we are able to talk it over afterwards over a nice latte at costa coffee-:) I take omoprazole twice a day and it's been a great help, hope this finds you well x
ReplyDeleteHi thanks for your kind words. Hope things are going a bit better for you? You can always email me direct (pjsmith1965@hotmail.co.uk) if you want to chat.
ReplyDeletePenny