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Thread: Siezures

  1. #121
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    Hi All

    Well thats us back from our holiday down south good news Alan didn't have a single seizure while we were away however the diarrhoea lasted for a further 5 days so Alan was in bed for 5 days he managed to get out for 1 day only not much of a holiday for him!!!!! The cottage was beautiful and the kids had a ball so that was good. We are up at hospital tomorrow and Wednesday so will let you all know how we get on.I am totally convinced now that the mycophenolate is to blame for the seizures and the new diagnosis of inflamitory colitis.

    Love to all M.x.

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  3. #122
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    Hello Mary,

    I've not been on for a few days myself. Oh i am pleased Alan did'nt have a seizure but a shame he could'nt get out more but one day is better than nothing.

    Well i am pleased the kids loved it and at least you got your break and i hope it did you well also.

    I wish you both all the best with the hospital tomorrow and what meds they finally decide with Alan and i do hope the colitis does eventually move but there's never 100% where that's concerned.

    Hugs & Kisses to you Terry xxxx

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  5. #123
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    any escape from the normal would have been good for alan.
    i hope you are a little rested.

    hopefully the doctors have a little more knowledge.

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  7. #124
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    Hello Mary,

    Hows things today because Alan's had to go to the hospital which you stated & what have they said if you don't mind me asking.

    Terry xxx

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  9. #125
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    Hi Terry

    No news today he just got bloods done he see's consultant who put him on the mycophenolate tomorrow at hospital and we'll have to tell her he has stopped taking it because of the diarrhoea and see what she suggests next she won't be happy but I don't care he hasn't had shaking or a single seizure since he stopped the mycophenolate so now totally convinced that was to blame for seizures,diarrhoea etc. We think she is going to suggest cyclophosamide(excuse the spelling) as they mentioned this when he was in with the seizures however we got talking to a really nice man up at hospital today and he said he had never before had a seizure until he was put on cyclophosamide his were so bad he said he ended up in intensive care so im not so sure I want them to start playing god with Alans life once again .The good thing is we are finally going to see Alans Rheumatologist next week so we are hoping to arrange for Alan to be treated by him for the lupus and not the kidney specialist who has been treating him since he was diagnosed will keep you posted on how all that goes next week.Hope you are keeping well.

    Take care luv M.x.

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  11. #126
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    Hello Mary,

    Thanks for getting back and letting we know what happened and the consultant may not be happy but not all drugs suite everyone and it may possibly of been the course of the seizures and diarrhoea is'nt pleasent for anyone when it happens out the blue.
    Mary if it comes to it about the other drug, also state knowing a person where this drug caused seizures and that you have great concerns about this drug as Alan as been ok.
    Now that is good news him seeing the rheumatologist because he'll know what to put Alan on seeing his blood results and mention the seizures the lot because i had to when i saw my rheumo the first time.

    I do wish you both the best of luck with tomorrow and when you have time please let we know mary.

    Hugzzzzz you way to you both. Terry xxxxx

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  13. #127
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    Quote Originally Posted by Peridot20_Gem View Post
    I do wish you both the best of luck with tomorrow and when you have time please let we know mary.
    i wish you luck... and the doctor knowledge

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  15. #128
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    Hi Guys

    Well as expected Alan has now been put on Cyclophosamide so fingers crossed it all goes well he's not to start it till next week we're hoping he doesn't experience any nasty side effects like he did on the mycophenolate here's hoping will keep you up to date with progress.

    Love to all M.x.

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  17. #129
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    Hello Mary,

    Cheers mate for letting we know how things go and starting Alan on it next week is giving his system a break from the meds before he starts it...fingers crossed for you this end mary that no seizures and affect start and hopefully they're giving him the right meds this time.

    Thank you for keeping we updated and i hope your healths fine besides, both of you takecare. Love Terry xxxx

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  19. #130
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    Hi Guys

    Alan got news today he's to start chemo on 26th July so fingers crossed all goes well.Very quick update xxx Luv M.x.

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