Posted , 10 users are following.
Does anyone else have trouble finding words or using wrong words? I have a busy brain and a busy life, hoping its lack of mindfulness or PMR and not a dementia. (Which my mother has.)
Does PMR negativily affect the brain apart from GCA/strokes/aneurysm?
1 like, 35 replies
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pauline36422 Elizamc
Posted
sometimes. i just say its the medication i am on weather they belive me i dont lnow lol x
Elizamc pauline36422
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lilian05079 Elizamc
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Hi Elizamc
Yes i had that when i was on prednisolone. It is calleded 'Steroid Psychosis' which causes cognitive changes whilst on steroids..I have no problem with it now, my cognitive functions are now normal....my best wishes to you Elizamc.....
Elizamc lilian05079
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Thank you Lillian that’s encouraging. I’ll now look forward to a return to normal- though my husband might say I've never been normal 😂😂😊
Silver49 Elizamc
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MariGrace Elizamc
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Yes, but mine has been because of the Prednisone. When battling Behcet's on 100mg a day, I had anomia / loss of words. It was one of the most frustrating problems I dealt with because I was teaching. Had to learn coping skills, a thesaurus helped a lot. A positive, my students were special needs and my sensitivity level to their challenges rose significantly.
With PMR, I've lost words, but not at all to the same extent. The pred dose is less, started at 60 and thankfully, am at 15. Years ago, once off the steroids, things improved.
Hoping the best for you.
MariGrace
Elizamc MariGrace
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Kittylitter Elizamc
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It’s frustrating, especially if we are used to thinking quickly and helping others to express what they find difficult. In my practice, it’s necessarily lead to more space, sometimes words get in the way anyway.
I hope your pmr journey goes as smoothly as possible. Best wishes.
Elizamc Kittylitter
Posted
I’m at the start of my pmr journey, only diagnosed in October and still at a 15mg starting dose, attempts to taper down so far have been unsuccessful. Best wishes to you also to you.
Anhaga Elizamc
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If you were only diagnosed in October you shouldn't worry too much about your taper yet. But I wonder how you've gone about tapering? Often people are advised to drop by 2.5 from a 15 mg dose and that is quite difficult for many. In fact my doctor told me to stay at 15 for about 5 weeks then to decrease by 1 mg per week, which worked fine for me until 10, but 9 a step too far, and since then have used the dead slow nearly stop method.
Elizamc Anhaga
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Anhaga Elizamc
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I believe it sometimes is harder to reduce after this sort of experience. Just grit your teeth and go slowly and it will come. Have actually had a bit of experience of this recently. I'd got to 1.5, but only just, and my doctor encouraged me to use up the rest of my tablets, stop and see what happened. I did try to taper to 1, against my inner voice as I hadn't been there long enough to know if it was good enough, but I also had been feeling so well I half believed I really was better. Well, the sad story is that eventually I had to go back up. And although 3 worked at first I then tried to taper again, and persisted a bit. Then 3 wasn't enough. So I tried 4, and did the same thing. Finally I woke up one morning feeling it was painful to get out of bed, took 7 (5 mg above my last secure good dose, 2 mg) stayed there a few days, then a few days on 6, a few on 5, and now sort of shuffling between 3.5 and 4. I think it has by default turned into dead slow taper from 4 to 3.5, and so from now on I guess that's what I'll have to do. I didn't think it would be so hard to get back down again. I am back where I was nearly two years ago.... But it could have been worse. At least I'm still in single figures! So the lesson really is, slow, slow slow, slower than you think could possibly be necessary. 🐌
Silver49 Anhaga
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I did the same as you, Anhaga, and managed to reduce to 1.5 but realised I'd overshot and went back up to 2.5 where I felt comfortable. I had to go up to 3 quite quickly as the 2.5 I was using up were well out of date and the pharmacist said they had probably lost some of their effect. Trying to save the NHS money did not work!
EileenH Elizamc
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Why in the name of goodness did she wait until now to think about 1mg/month? I think it is the "Bristol paper that says that tapering more than 1mg per month is predictive of flares - but do the GPs/rheumies listen to it?
Oh well, better late than never I suppose - but yes, when your body has been messed about like that it is quite common for it to respond more slowly with a return to a higher dose - and sometimes it even means you need a higher dose than first time round. Usual would be to stay at 15mg for 4 to 6 weeks, until all symptoms are as much improved as they are going to and, if it applies, the markers are down to normal range.
Elizamc EileenH
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