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Thread: Prednisone and Brain Powers!

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    Default Prednisone and Brain Powers!

    Hello beautiful warriors!

    Just wondering how doses of prednisone can affect our cognitive state. When I was first put on it I felt as if it affected me hunger, and sleep mostly, along with the other physical symptoms (skin, face, tremor. etc) Other, following years when I had to climb up on steroids,however, it felt as if it affected my cognition and mental state too much as well. I had pred induced anxiety and auditory hallucinations, hearing music from my AC (at least it was some kind of classical music I've never heard before...pleasant actually). But the most bothersome was the inability to construct sentences, speaking or writing, didn't matter, I had problems recalling and using words properly and grammar. I had to slow down and speak more slowly, taking breaks to recall a simple word, at times. Thinking about more complex problems would give me insane tension headaches, due to poor concentration...As the doses decreased it got better, but not 100%...
    I heard people with Cushing's Syndrome suffer similar symptoms to people who are on a lot of steroids due to cortisol and they are recommended to exercise their brain.
    I know we do recover from some prednisone side effects and less from others ...I wonder if any of you have any experience with this issue.

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    Hi Ailish, how's the snow!? Pred does mess with us in many ways including our cognitive activities. I tend to be a little aggressive naturally...old football training???? LOL!...and the pred really messed with me while in the hospital and after. I'm not sure it still has any kind of affectations, hey, I'm getting oldER...but when first out of hospital I'd argue with anyone about anything...really. Not in a mean way, but felt a bit of paranoia I guess and was on the defensive a lot...I'd argue with my wife about a piece of garbage walking across a parking lot. And, I guess, I wasn't nice to some of the nurses whilst in ICU too...nuff said. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    I too, was aggressive and a terrible control freak! I'd schedule almost a whole week ahead and if anything went out of the way I planned I'd suffer horrible anxiety. The lower my prednisone was getting the more I was realizing how ridiculously I was behaving


    The snow is GREAT! I find joy in almost any weather
    Last edited by Ailish; 12-18-2014 at 03:21 AM.

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    Hello!
    I am new to the forum....I was diagnosed on April 24, 2017 after a 3 week hospital stay of doctor's not being able to identify the two abscesses in my lungs. Along with the month prior having gone deaf in my right ear, with constant ringing. While in the hospital my symptoms sped up with episcleritis, joint pain/inflammation, and abnormal blood cells found in my kidneys. Thankfully, they caught everything early and my kidneys are totally fine, as well as everything else, except that I am still deaf in the right ear with ringing. My treatment was 3 days in a row of 500mg steroids, then down to 60mg Prednisone daily, then 1 week later Rituxan infusion, then back up to 80mg Prednisone due to continuing joint inflammation, then 2 weeks later another Rituxan infusion. After almost a month of 80mg Prednisone, taper to 60mg Prednisone for 4 weeks and as of today, my doctor now has me on 40mg Prednisone for the next 4 weeks. As of yesterday, my blood work shows all my levels as normal (ESR, CRP). In my doctor's words...."the disease is quiet" (remission!) I will be on Prednisone, tapering down probably through to the end of September (hopefully). And I am now on Imuran, slowly increasing until I am on 125mg (currently at 100mg). My doctor says I will need to stay on Imuran for 2 years to lessen the likelihood of flareups when I finally stop the drug. I do not like the idea of staying on this drug for that long, but she re-iterated that due to the severity of the disease and the fact that I already lost hearing in one ear, I need to stay on the drug for 2 years. So, all that being said I have two questions for anyone that would like to give their input. #1 The Prednisone has really messed with my cognition. When people are talking to me, I am not absorbing everything and processing it. And what I do absorb, I don't necessarily remember later. And I use to be able to communicate quickly and effectively, now I have to slow down and pay close attention to what I am saying...and the words don't always come. It's like...I can't find them. And then sometimes, I will be on a roll communicating with someone...and boom, I hit a wall. No idea where I am going in the conversation. Prednisone is such fun! I see that some of you in this thread have experienced similar things due to the Prednisone. Has anyone else? (Btw, it has also made my teeth super sensitive). Question #2 Has anyone been on Imuran for a long period of time and found what my doctor said to be true.....that after 2 years of Imuran, when you stop, the likelihood of flare-ups is less? Sorry for the long post! I am super thankful that they were able to quickly diagnose me before Wegener's wreaked havoc in my body. I've read a number of everyone's posts on this forum and so many people have gone through such extremely difficult things! I appreciate any input that anyone has!

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    Welcome River Joy. I have been on Prednisone for 18 months. This was before I was diagnosed with Wegs. I didn't sleep well for months, ended up getting sleeping pills. I ate everything in sight and gained 50 pounds. I acquired the "Moon Face". The Prednisone also made my cataracts grow rapidly. I joke that "I could hit a ball out of the park, if I could see it".
    Now that I have had Rituximab, I am finally starting to taper off of the steroids.
    Follow your Dr. advice and taper as fast as he'll allow.

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    Quote Originally Posted by RiverJoy View Post
    Hello!
    I am new to the forum....I was diagnosed on April 24, 2017 after a 3 week hospital stay of doctor's not being able to identify the two abscesses in my lungs. Along with the month prior having gone deaf in my right ear, with constant ringing. While in the hospital my symptoms sped up with episcleritis, joint pain/inflammation, and abnormal blood cells found in my kidneys. Thankfully, they caught everything early and my kidneys are totally fine, as well as everything else, except that I am still deaf in the right ear with ringing. My treatment was 3 days in a row of 500mg steroids, then down to 60mg Prednisone daily, then 1 week later Rituxan infusion, then back up to 80mg Prednisone due to continuing joint inflammation, then 2 weeks later another Rituxan infusion. After almost a month of 80mg Prednisone, taper to 60mg Prednisone for 4 weeks and as of today, my doctor now has me on 40mg Prednisone for the next 4 weeks. As of yesterday, my blood work shows all my levels as normal (ESR, CRP). In my doctor's words...."the disease is quiet" (remission!) I will be on Prednisone, tapering down probably through to the end of September (hopefully). And I am now on Imuran, slowly increasing until I am on 125mg (currently at 100mg). My doctor says I will need to stay on Imuran for 2 years to lessen the likelihood of flareups when I finally stop the drug. I do not like the idea of staying on this drug for that long, but she re-iterated that due to the severity of the disease and the fact that I already lost hearing in one ear, I need to stay on the drug for 2 years. So, all that being said I have two questions for anyone that would like to give their input. #1 The Prednisone has really messed with my cognition. When people are talking to me, I am not absorbing everything and processing it. And what I do absorb, I don't necessarily remember later. And I use to be able to communicate quickly and effectively, now I have to slow down and pay close attention to what I am saying...and the words don't always come. It's like...I can't find them. And then sometimes, I will be on a roll communicating with someone...and boom, I hit a wall. No idea where I am going in the conversation. Prednisone is such fun! I see that some of you in this thread have experienced similar things due to the Prednisone. Has anyone else? (Btw, it has also made my teeth super sensitive). Question #2 Has anyone been on Imuran for a long period of time and found what my doctor said to be true.....that after 2 years of Imuran, when you stop, the likelihood of flare-ups is less? Sorry for the long post! I am super thankful that they were able to quickly diagnose me before Wegener's wreaked havoc in my body. I've read a number of everyone's posts on this forum and so many people have gone through such extremely difficult things! I appreciate any input that anyone has!
    Hi,

    Firstly, the higher doses of prednisone can do all kinds of things to you. It messes with your sleep, appetite, and metabolism in general, so issues with cognition/awareness would not surprise me. I don't remember that being a big issue for me though. As you taper, I bet things will improve.

    My maintenance drug is not Imuran, but methotrexate. I think the same is true for both though, that there is no consensus as to how long to continue treatment. I've been told I should continue for as long as my labs say I am safely tolerating it. Since I also have near deafness in one ear, I really want to avoid a flare that could affect the other one! I've been on the MTX for over three years.

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    Thank you John & Tom! I appreciate the input! Looking forward to being off Prednisone hopefully by summer's end...and not looking forward to staying on Imuran....BUT very thankful there are medications available to address GPA!

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    A saying that I heard once and has stuck with me...."It's better than a sharp stick in the eye".

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    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.
    Last edited by gilders; 07-06-2017 at 10:24 AM.
    Diagnosed April 1995

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    Thank you Gilders for all the info! My ENT had suggested a CROS hearing device. I will look into whether this is the same type of hearing aid you're referencing to see if it will help with the tinnitus as well. In regards to the Imuran, it sounds like I shouldn't be too concerned about being on it for 2 years. Thank you for sharing your experience! Very helpful!

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