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Thread: Prednisone and Brain Powers!

  1. #11
    Join Date
    Feb 2013
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    Quote Originally Posted by gilders View Post
    Welcome River Joy.
    Before I forget, I want to address your deafness and tinnitus (ringing in ear). My ear damage occured during my initial flare of Wegener's when I was 17 (I'll be 40 next month). I am almost deaf in my left ear and have tinitus in it. All the ear specialists for many years said nothing could be done to help as it was nerve damage which hearing aids don't help with. The "specialists" said tinitus can not be helped with hearing aid either, but referred me to a tinitus nurse.
    The tinitus nurse (on a much lower pay grade than the specialists) explained that I'm getting tinitus because my hearing is good in my right ear, so my left ear tries to compensate by making it's own noise. So after 20 years of being told nothing can be done by well paid specialists, a nurse arranged an hearing aid.
    Whilst wearing the hearing aid, my hearing has improved a little, but the tinitus has improved massively.

    I think your Pred question has been answered, but yeah, it sucks and the symptoms are "normal". They do improve as you drop your dose and I find below 10mg is when it becomes much easier.

    From the age of 17 until about 37 I was on Imuran for about 15 of those years. There was no Rituximab when I was 17, I couldn't tolerate Cyclophosphamide and other drugs such as methotrexate wasn't compatible with my kidney failure.
    So, up until about 2 years ago, high doses of pred and Imuran were pretty much my only option. Fortunately it worked well until 4 years ago when it was stopping a flare getting too aggressive, but not getting it in to remission, so I started on Rituximab.
    So after 15 years of Imuran (over a 20 year period), has it done me harm?........maybe a little. I have immature, odd shaped red blood cells. My kidney specialist and vasculitis specialists think it's due to Imuran. The blood specialist doesn't, but came up with no answers even after bone and bone marrow biopsy.
    The other problem is my treatment after my upcoming kidney transplant. Due to being immunosuppressed for approximately 18 of my last 23 years, the antirejection medication will leave me at high risk of infections that most transplant patients wouldn't get. I will also struggle to fight these infections more so than other transplant patients. This isn't an Imuran issue in itself, but a being immunosuppressed issue for many years.

    So in brief, I would not be worried about 2 years of Imuran.
    @crowneagle you were worried about Imuran....
    Thanks for the info Pete.
    dx 2008

    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  3. #12
    Join Date
    Sep 2014
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    Hi River Joy,

    I have been on pred for 2.5 years , but never above 40mg. I have had cyclophosphamide, methotrexate and Rituximab. I also had to have posaconazole and amphotericin B for aspergillosis.
    In May this year I was deemed to be having a flare after lots of viral infections, my pred was increased to 20mgs from 10mg which I had reduced to after two doses of Rituximab. I became hyperactive, telling lots of stupid jokes e.g "if I don't get dog food it'll be a dogtastrophe". Then when I was walking with said dog, I had a very intense visual image of Batman?! coming round a hedge which I was approaching. I felt this was in my head and not real, anyway the dog didn't react. When I told my (adult) daughter afterwards she said "oh that's brilliant mum, you know Louie (dog) he's such a laid back dude he probably thought "Batman, meh!"
    I did hastily reduce the pred but I tend to have it on a sliding scale but never above 15mg.
    Two years ago ago when I was on Cyclo and methotrexate and pred, I really had difficulty with cognitive processing. Trying to help my grandaughter with simple maths really shocked us both at my inability to do simple sums. When I related this to my consultant, he said (rather airily I felt) .."of course the drugs you are on and your illness will cause this"!
    Take care

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