Monday, 17 March 2014

Seen in clinic as planned. Have had a busy weekend and was feeling decidedly wrecked today........achy joints, cramp all the usual crap. Anyway, the consultant was lovely, and decided he wanted more bloods doing while I was there (veins begging for mercy, approx 35 blood tests since last Sept) He will ring with results tomorrow, and if still going down, will reduce pred a bit more ...yaay! Asked him to give a suggestion about how long he thought getting really safely stable might take......he thinks 3-6months , 6 to be safe. The thing is, I NEED to work out what the hell I'm going to do about work. I don't want to go back and fail again. It's so disruptive for everyone and soul destroying for me. I'm considering asking work for an "unpaid special leave" where my job would be kept open, but pressure off, and wanted to know how much time to ask for. They might refuse of course. It would just give us all a bit more of an idea about how stable I can get. I know there will always be the risk of flares and I know no one can really be sure, I just think that it might be good to "surrender with permission" so to speak, and give myself time to recover as best I can. Any opinions??
Have to have bloods again on Friday then back to clinic Monday. he wants to start Aza again but only 25mg initially. Stomach much improved on omeprazole 20mg bd. Phosphorous increased for cramp!
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11 comments:

  1. Anonymous17 March 2014 at 13:57

    Sorry to hear your not feeling that great, could be withdrawal from the steroids do you think? or just general aches and pains from overdoing things?
    I hope the results have come down further so you can reduce the steroids.
    As with work its so hard to know when to go back. I totally understand what you mean with feeling like you have let people down. Could you try going back on reduced hours and then build it back up when your strong enough?
    Hopefully once your back on the aza your numbers will stabilise and your hospital visits will become further apart and then you may feel strong enough to try work. xx
    Emma x

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  2. Anonymous17 March 2014 at 14:00

    Although saying that I've had this for 10 years and I go every two weeks. Most I got it down to was monthly. Hopefully you will be more lucky then me.xx

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  3. Anonymous18 March 2014 at 13:17

    Did you get your blood results? xx

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  4. Anonymous18 March 2014 at 13:33

    Hi Penny, Hope you are feeling ok today. I was thinking about your stomach pains and wondered when you take the steroids. It sounds like it may be in the evening. How about taking it in the morning after the Omeprazole. I used to take the Omeprazole half an hour before breakfast then all my steroids after breakfast, it may help with the tummy pain. I also found the best way to take the Aza( when you start it) is just before eating my evening meal. It really helped with stopping the nausea. It also means you are not taking a complete cocktail of drugs all in one go. I think your idea to apply for unpaid special leave is a good one as it gives you flexibility. Especially as you have no idea how long it will take for you to feel well enough to return, it could be sooner than you think if you keep responding well to the drugs. Hoping your levels have come down some more. With love Jo xx

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    1. Auto immune18 March 2014 at 14:02

      Hi jo I take omeprazole morning and evening now and things are much better x I take the steroids after the omeprazole. Like you, I space it all out as best I can. Hopefully consultant will ring tomorrow and let me reduce some more! X

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    2. Anonymous19 March 2014 at 07:03

      Hi penny.Hope your pred gets reduced today. x

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  5. Auto immiune hepatitis19 March 2014 at 11:39

    Still no results!! Is this Emma? Did he ring you with yours?

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  6. Anonymous19 March 2014 at 11:52

    Hi hun yes it is.I had an answer phone message left which I've only just listened to x Have u tried ringing them.I had to chase them last week Xx

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  7. Anonymous19 March 2014 at 11:57

    I rang them two days in a row and got quite shirty with the secretary. I presumed all must be fine but it wasn't. Its not on when your on high doses and waiting for the call to say you can lower it. Some times i wish gps could be more involved with the drug changes x Emma

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    1. Auto immune hepatitis19 March 2014 at 12:08

      I will ring secretary in the morning. I was trying to be patient! ! I just wish they wouldn't say they will ring and then not do it. .you just worry waiting for the call x

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