Memory impairment?

[Marjorie237]

I have been diagnosed for about 6 moths. On 4g Pred. Last few weeks really noticed memory probs. Should I be worried. Is it the PMR or pred?

[PMRpro Ambassador]

To have got to 4mg pred in 6 months is amazingly fast. I had memory problems, or at least brain fog with PMR which improved once I was on pred. Some people find pred doesn;t help - but that is usually at higher doses, not at such a low dose.

I would be inclined to speak to my doctor about memory problems. But it would be important to know if you have other medical problems or are on other medications. And how do the memory problems manifest?

[Marjorie237 in reply to PMRpro]

Thanks I am going to try my best to see my doctor next week.

[Blearyeyed in reply to PMRpro]

Totally agreed as usual Pro!

[Yellowbluebell]

We all have varying degrees of pred brain. I have put milk in the oven and other stupid incidents. I often can not remember the name of things and often need OH to fill in the gaps. If you are really concerned about your memory though then please see your gp again. Hopefully as you continue to taper you will have less problems.

[PMRCanada in reply to Yellowbluebell]

I have the same experience which hubby used to play the game “fill in the blank.” If I’m searching for the correct word I wish to use, I try and give clues and describe what I’m trying to say. He then suggest words that are funny and not at all what I’m trying to say. Having a sense of humour in the midst of the challenges is very helpful for me (and him).

[Hidden in reply to PMRCanada]

I can imagine you get weird combinations 😂😂😂

[PMRCanada in reply to Hidden]

Sure do.

[Hidden]

Any other symptoms? Pain? Fatigue? Thats a fast taper. Between PMR, pred, fatigue etc my memory is very bad. Some days I can barely collect my words together, and wander into rooms with no idea what I went for....the usual. If it's beyond those kind of general memory slips you should talk to gp to ease your worries.

[Marjorie237]

Did come down to 3g but couldn’t cope so back up to 4. Neck pain still prevalent. Fingers now bad and losing strength in hands during past couple of weeks. Worse in the mornings. Have been on hols but no improvement. Put bit of weight on but will try my best to reduce this. Have been trying to find safe exercises. Have a treadmill but only walk on it. Wish I knew what to do to help myself. Doc says no need to see rheumatologist but feel like I could do with more help and information. Just worried about how bad it’s going to be....

[PMRpro Ambassador in reply to Marjorie237]

If you want to tackle the weight problem don't look at it from the point of view of increasing activity - that doesn't work for anyone really and that is proven. Cut the processed carbs in your diet entirely and keep to vegetables and limited fruit if you must have sweet things. Quite a few people find that too many carbs causes foggy brain - as Poopadoop says.

You may not need a rheumy, often they aren't a lot better than a GP. What you need is a doctor who will work with you and provide sensible help. Tell us your problems and someone will have been there - that is guaranteed!!

[Hidden]

I think your physical state and your state of uncertainty would definitely affect your general mood and memory. What dose of pred did you start at? It's not unusual to relapse or flare when you reduce too quickly. You are 6mths into a journey that will probably last 2 years or more I'm afraid. Your body needs what it needs to get rid of inflammation.

You should think about a low carb approach. That would help stabilise your weight gain and stop your blood sugar spiking so much. That itself can cause a foggy mind. Hopefully the extra pred will help the neck pain. Easy for me to say but try not to worry so much and try to resist reducing pred while you have pain or stiffness that is part of PMR. 🌻

[Blearyeyed in reply to Hidden]

Great advice poops!

[Marjorie237]

Thank you. I have always been so impatient. Must learn!

[HeronNS in reply to Marjorie237]

If nothing else, PMR/pred has taught me patience. I'm not the same person I was five years ago when this adventure started. And although it seems strange to be saying this, it has been no bad thing. Not how I planned to spend my retirement, but things could be worse.

[Blearyeyed in reply to HeronNS]

I agree learning to adapt to the " New Normal" has taught me to be more calm and patient and to realise that just because things need doing it doesn't always have to be me doing them.

I am not going to drop the new regime after PMR leaves the building because I know that the new serenity and making the really important things the priority in my life will make life after PMR alot more fulfilling than life probably was before it!

[PMRCanada in reply to HeronNS]

Agreed! I have a new-found compassion and patience since living with PMR. I try not to sweat the small OR big stuff that happens, as to avoid the stress that is bad for PMR.

[Rokerman]

As PMRPro has said - that’s a heck of a fast taper down to 4mg?! I’ve been able to taper from 20mg to 2mg but that’s taken 3yrs (albeit with no flares). The trouble with memory loss is that it’s probably going to occur at our age anyway so the effects of Pred are hard to establish! It (brain fog) does happen to many of us - I’d booked up a rock concert several months ago - looking forward to it - then my wife looked at the calendar and asked ‘why didn’t you go to the gig last night?’........oops!! I’m now putting reminders on my I-phone calendar for EVERYTHING.... (this doesn’t help with questions at the pub quiz however!)

[SheffieldJane]

Definitely experience this. I can’t discuss the book I am reading or the film I have just seen. I have nominal amnesia. A fancy way of saying I can’t remember names. Recall comes back occasionally and it’s amazing. 3 years PMR 5 mgs of Pred. The family fill in the whose its and the what’s its pretty efficiently. I hope we get our facilities back. It’s what we call Pred head.

I agree with PMRPro though, you did come down fast. Are you well otherwise?

[Mozziebuzz]

Hi I would just like to add that low sodium levels in the body will cause a foggy brain. I have it all the time and have my blood tested regularly. As far as I know it is not the PMR/GCA meds causing this with me but something to be aware of all the same. I am thoroughly devoted to my lovely GP who discovered this after I’d been fobbed off for years by other doctors.

[Mary63]

You say you still have neck pain at 4mg. That suggests to me you are not on enough pred. Can you boost up to say 6mg and see if you are more comfortable? That would have the effect of mopping up the inflammation which has built up because of too quick a taper. Then you might be able to come down quite quickly to 4mg again.

Re memory problems I have nothing to add to others’ comments.

Good luck

[Songbird69]

Hello! I am new to this board but have been following and taking advice from a distance!

I was diagnosed with PMR in July 2017 and now down to 3mg of Pred.

I too, over the last few weeks have noticed subtle changes in my memory. I read that Pred can affect the hippocampus causing short term memory loss. Worrying.

Does anyone know if this will rectify itself when we are finally off Pred, or whether it is permanent? Could it get worse?

I will be interested to see what your GP says, Marjorie.

Thank you all for your help on this board.

[Hidden in reply to Songbird69]

PMR likes to have its presence felt brain fog wise. Unusually know when I get a bit forgetful and fuzzy I may be starting to flare.

[PMRpro Ambassador in reply to Songbird69]

My memory problems were worst without pred, but things have improved a lot over the years and most of the time the elephant memory is back. Not terribly happy during a current flare and after a transient global amnesia a few weeks ago but it is already noticeably better.

[Songbird69 in reply to PMRpro]

Thank you. That makes me feel better rather than previous thoughts that I am going a tad mad!!

[Jackoh]

I frequently can’t remember folks’ names, certain expressions, certain words.I just try to find alternative and move on!!

[Hidden in reply to Jackoh]

My favourite words are doodah and thingywhatsit with hand movements that mean nothing.

[Jackoh in reply to Hidden]

😂😂

[bunnymom in reply to Hidden]

Doesn't work for names tho lol 😀

[Hidden in reply to bunnymom]

I know. Took 3 days to remember the names of a distant friend. Embarrassing.😂😂😂

[Songbird69 in reply to Hidden]

I’ve been doing that for years!!

[yogabonnie]

Before I even READ the other replies I am going to say WELCOME to the CLUB!!!! Try not to worry! Prednisone I think is the culprit. I started doing sudoku just to assuage my worry..but absolutely it is the prednisone. Dare I say it gets a tiny bit better as you reduce. Many of us on this forum call it Pred Head. ..but there are other names. You say you are on 4.g. 40mg??? do you also have GAC? Now I WILL read the rest of the comments. Best of luck to you! (If you get stressed..and you will, check out my relaxation tracks..either under "Relaxation" in the search or on my profile.

[livingwithpmr]

I'm new here. I've had PMR with no GCA (or little) for two years. It took drs 6 mos to diagnose it. I suffered those 6 mos. Started out at 10 mg pred; am down to 2. I

had flares twice, had to increase i mg each time. It pushed me over the edge to diabetes. I take glipizide for it when the morning sugar count is higher than 125, otherwise watch the diet. I lost 10 lbs on pred and gained 10 lbs when starting glipizide. Overall I am down 15 lbs in two years. I have recently begun to take CBD a derivative of hemp, not addictive, but definitely helpful in hiding pain. I do have episodes of short term memory loss, but I've dealt with that my whole life (since a drowning incident at age 3). I am just this week beginning to take selenium which is hard to find in US vitamin centers. Rheumy recommended it.

[Gab-Gordon]

Hi. I also suffered memory problems while on steroids. It started with me just needing to make notes but in the end I lost my memory altogether. I couldn't remember anything much at all. No one could explain why . Now its believed I possibly had a stroke but by the time I was sent for a cat scan nothing showed. I'm still not sure as it was a gradual building up of forgetfulness not a sudden one. I'm certain it was the steroid and there is no way I would ever have it again

[PMRpro Ambassador in reply to Gab-Gordon]

Was it long lasting or just over a relatively short period?

[Hidden]

Hello, I couldn't remember things when I first stated on Pred. I mentioned to my husband that I was worried that I was getting dementia but he quite quickly pointed out that it only started when I started on Pred! Strangely enough, it got a lot better as time went on until I final finished taking them and it happened all over again for a couple of weeks.