I am fairly well with my mostly GCA and sometimes moderate PMR and so very grateful for all of you over the years. Currently, I am trying to reduce from 3 mg Pred. down to 2.75 and having a hard time. (I have failed at trying for 2.5, and have messed around at 3.5 and 3.25.) I am staying for 1 month at a sequence of one new low dose of 2.75 mg. and 4 old daily doses of 3. I am accustomed to having a hard time beginning after about 60 hours from a new lower dose. Whatever it is that the (old higher dose) of Pred does, it begins to abate at about 60 hours from the new lower dose. Since I am fairly well (after about 7 years), I have not paid attention to fuzzy brain. When I was sicker, I was too worried about other symptoms to notice. But I'm really having fuzzy brain during that 3rd day after the morning's lower dose. I've heard many of you talk about fuzzy brain. I don't think that it's bad enough to be aphasia. But it's disconcerting. I'm getting pretty healthy. Don't drink alcohol. Do we know why it happens? *
Thanks! Any help you can provide would be welcome. And sorry for the length of this post.
*It's not horrible. I'm hiring a band for my daughter's wedding to be held in a year and I could not think of the major, annual parties in town that have a dance band which I wanted the band to emulate. The "names" would not come to me. I'm talking about easy names like "Red Cross Ball," Remembering this is not rocket science. It happened also even worse during the prior sequence. I stopped working and read a book! One time I forgot the word, "glass." "Husband, do you want me to bring your _________?" So it's chronic, but limited to a day or so.
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Asbeck
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Hi, prior to dx I genuinely was. Going to the drs to get tested for early onset dementia. I couldn't remember things like what slippers were called and other everyday items. I couldn't finish sentences. It got better with pred but I seem to be having fluttery flares that seem to leave me with that brain fog again. I don't know what the significance of it occurring as you taper but at the doses you are on now perhaps adrenals etc working against you as you taper and pred withdrawal. Any chance of just staying longer at each drop to get your body used to it. Your drops are really sensible at the dose you are on but as we know the smallest dose can make a big difference. Hopefully others will have advice! PMRpro linked a paper on pred withdrawal. 🌻
I have been like that since starting pred and probably for a bit before that. I rely on OH to guess which word i am looking for but when in court i have crib notes and a fantastic junior who is getting very good at whispering when I am desperate🤪😜
Even if we cant solve your problems we have usually experienced them and can commiserate with you. Soneone will usually have had the same things in their time with pmr. Or in my case just pray you dont call the judge something rude and get put in the cells😈. YBB
Poopadoopy: I read PMRpro's link which you provided. I had some knowledge about the adrenal glands and had thought that I was long over that hurdle. But I didn't think much about the hydro thorax (or whatever it is). At any rate I'm happy and relieved that it might be Prednisone withdrawal. Good riddance! Thanks for taking the time.
Still be alert for GCA. It doesn’t follow the blood test results sometime. I have just been diagnosed wit head and eye pain ( GCA). Nothing else yet. Head and energy improving at 30 mgs. CRP and ESR raised for me - first time ever. Don’t go lower unless this settles.
I was exactly the same at 3 mgs. Films, Actors, musicians - gone! Fortunately my husband of 34 years can finish all my sentences. I have just developed GCA and am on 30 mgs and my brain is sharper. I now wonder if my sluggish Adrenal glands were the culprit?
Daughter’s weddings are stressful on so many levels as well. Sounds like you are pulling the hat out of the bag again Mum!
I will be interested in the replies you get. I have dementia in my family and really don’t want that fate. Pred Head we call it. Let’s hope it wears off.
I've noticed a change in you too. I suspect it was the GCA affecting blood flow to the brain - if there are signs in the brachial artery it is likely to be affecting other vessels, including the carotid and other arteries supplying the brain.
Me too. Your mental acuity much better. You are like you used to be on screen anyway. Maybe a mixture of adrenals but having GCA treated sounds logical. 👍🌻
Thank you SheffieldJane. It's comforting to know that your "new" troubles had started at around 3 mg. And here I had thought that I was on my way up and out. We'll see. But I'm always heartened to see that so many people respond, even after so many years.
You have always been one of my heros. Thank you for the articles. So far it's only on the 3rd day after a lower dose. We'll see. I could be so much worse.
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