Short and long term memory loss? What cause... - Vasculitis UK

Vasculitis UK

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Short and long term memory loss? What causes it and why?

54 Replies

Forgive me if this question has been asked before (I've possibly already forgotten anyway).

Recently, I am often forgetting to do stuff more than I remember. This is a problem because I used to have a brilliant memory ( I could remember car registration plates, bank card numbers, birthdays and even where I'd parked the car). These days I go up stairs and I can't remember what I went up there for and have to retrace my steps...unless I get distracted by the previously forgotten task). I'm also frequently reminded of things I've said but I cannot recall the conversation. I don't drink alcohol, so I can't blame that. I have read that prednisone can cause memory loss and I wondered if anyone else has experienced the same.

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54 Replies
orsen-trapp profile image
orsen-trapp

Yes - possibly worse now on Pred but was losing words and lacking memory when flaring and untreated too. I think there was a recent thread about this - involved conversation about making notes/phone reminders so maybe try scrolling down?

Think there was a recent thread about this ... (I tend to repeat myself too!) ;)

in reply to orsen-trapp

Thanks, I'll have a look to see if I can find the previously posted stuff.

I'm already at the note taking and list making.

Hi rasp tea,

I totally know what you are talking about! I do that type of thing all the time and my recall of words, especially medical terms is awful. I also struggle to find a specific word halfway through a sentence or forget what I am going to say. My spelling ( which was excellent ) has completely gone to pot.

Since coming off prednisolone it hasn't improved. I think these problems are probably multi factorial, part disease, part medication and part fatigue etc.

Sorry, but at least you know you aren't alone!

in reply to

I had some family over today and they were really pulling my leg because I couldn't remember - it got to the point where I didn't know if they were joking or if I'd actually forgotten. Hilarious but also a bit scary. My memory is getting worse. I have lists to remind me of lists and a big calender by the phone and I still get stuff wrong or double booked.

Good to know I'm not alone...I think.

Thanks.

Nadine99 profile image
Nadine99

I do exactly the sort of things you all say, but, I don't have Vasculitis and am not on any medication so where does that leave us all???

London37 profile image
London37

That has been happening to me since i started taking Methotrexate. My Pred has been cut down to 4mg one day, 2mg the next and so on. I don't remember that happening when I was on a higher does.

London37 profile image
London37 in reply to London37

Dose, I mean. Lol My spelling isn't what it used to be either!

BronteM profile image
BronteM in reply to London37

Part of it may be the medication. I had real problems when I was on Methotrexate in 2012. It's the summer that I don't remember, and my then rheumy just wouldn't believe me. When I stopped it (October 2012) it was like stepping out of a box, and things improved a lot. In fact one friend said to me 'welcome back, you've got a brain again' and my daughter says it was like a personality change. Later medication has been fine in this respect. Though of course I may not be remembering that properly either?!

in reply to London37

I take methotrexate too. My memory has been getting worse since taking it but I feel better than I did when I was on azathiropine. Hmmmm...could be a side effect?? Is it listed? I'll have to have a look. My prednisolone is currently 7.5mg (they won't let me go lower as last time I had a flare and had to increase it back to 20 or 30mgs). If I could get my weight down I could reduce my doses but it's such a slow process...Thanks for letting me know.

There is information linking methotrexate and memory loss, but it doesn't appear to be a common side effect. There was reported toxic encephalopathy due to methotrexate but that appears to be in larger doses (for cancer treatment). I guess I'll add it to the list for my next appointment with my Dr.

orsen-trapp profile image
orsen-trapp in reply to

My memory problems, word-loss, etc, were happening before I was treated but could perhaps be explained by lack of oxygenated blood getting to my brain due to inflamed aorta. Was still bad on Pred but the brain fog seems less constant since adding MTX (not much less constant but at least I'm getting slightly more occasions when my brain seems to work OK). Don't think the MTX has made memory any worse. Apologies if I've already said this (sigh!) ...

in reply to orsen-trapp

Funny, lol. I was wondering if I should get my bp done, I think that high :-P can cause the brain fog too. Thanks.

orsen-trapp profile image
orsen-trapp in reply to

Dunno about high BP, rasp - mine was on the floor when inflammation out of control; now it's normal to high on Pred.

in reply to orsen-trapp

Cheers anyway. The GP surgery has just called, I had my bone scan yesterday and they want to discuss the results...have to wait till Monday. Very confused as the person doing the scan said the results take 10 days and for me to ring my GP. I'm beginning to think I remembered that wrong too. Thankfully it's a gorgeous day here and my littlest and me are enjoying our home grown strawberries. Yum. Thanks again, I hope you're have a nice day too :-)

orsen-trapp profile image
orsen-trapp in reply to

If that's a DEXA, that's quick ... on the other hand they sent my results to the wrong surgery so I waited ages! Just coming to the end of our strawberries - think I've had enough of them now! Must stop skiving and do some baking if the MTX side-effects will give me a break! Ah, there's a thought - will incorporate the strawbs into a traybake!

in reply to orsen-trapp

Yep, it's the DEXA. I guess I'll find out on Monday. They probably need to do it again, things like that usually happen to me (bad at instructions, had to have the lung CT scan redone twice cos I didn't breathe at the right time)

My strawbs are still in abundance. Ain't seen any raspberries yet. Cheers.

orsen-trapp profile image
orsen-trapp in reply to

I wonder if all the CT scanners have the same satnav female voice. I nearly giggled the first time it instructed me to breathe in :D (Doesn't help that it's the same voice as on a certain Radio 4 programme when they play 'Mornington Crescent')

in reply to orsen-trapp

Hi orsen-trap. After a long weekend waiting, the GP has just called (an hour later than scheduled). The DEXA scan revealed that my results were almost normal but in the minus range...on the cusp of osteopenia. GP isn't concerned and said to have another scan in 3 years. I then asked if that was too long given that I'm on steroids. She then asked how old I was and if I was on steroids?? (Odd, given she'd called me) She said leave 2 years then. She's left a diet sheet with her receptionists, showing calcium rich foods and told me to take daily walks.

I asked if the result could have been affected by my steroids and she said probably but as I can't come off them there wasn't a lot I or she could do about that. Why did she bother calling. Very odd.

orsen-trapp profile image
orsen-trapp in reply to

I read somewhere that most ladies of a certain age are borderline. But I may have forgotten/mis-remembered. I'm on Calcichew D3forte and was on Alendronic Acid until my DEXA but have been off that for a while as I don't need it. GP should have had your notes in front of her!!

in reply to orsen-trapp

Thanks. I was confused as my GP could have passed info via the receptionist who called on Friday as there wasn't really anything to report to me, it could have save so much time and I would not have had to sit by the phone for ages. (After an hour I rang to make sure I hadn't misunderstood where I was supposed to be!!) I had written it all down too. Never mind, sounds like my GP suffers memory loss too as I only saw her a week ago!! Take care.

BronteM profile image
BronteM

That's interesting - I have to say that I never looked for it! I have a long history of sensitivity to various drugs, and just assumed that it was part of that. MTX also gave me ulcers in my mouth and other unmentionable places, so I was taken off it when I moved to Addenbrookes. Cyclophosphamide brought me out in a rash, but didn't affect my brain(?), so that was a more conventional reaction. And I don't think that the pred has had an effect on my memory; my temper is a different story.

I have a neighbour who takes MTX for his arthritis, and he thinks it's a wonder drug. His memory is seems excellent, but I'll ask him what he thinks.

in reply to BronteM

BronteM, I had read about those side effects, how awful...these drugs really aren't very user friendly. Cyclophosphamide wasn't as effective as had hoped for me, so many foods I can't even touch after the nausea I had with it. Methotrexate has been working well for me and I am reluctant to think the memory/brain fog is a symptom of that. My diet is healthy, I'm not taking anything without doctors consent or listed for a reaction either. Maybe it's due to the lack of sleep recently. Thanks.

Winter64 profile image
Winter64

I don't take pred or MTX and my memory is now really bad, my spelling too. Put a bag in one hand and I start wandering off to that side! I have UV so brain isnt supposed to be involved xxxx

in reply to Winter64

That made me chuckle Winter64. So true, I know exactly what you mean. It's funny but also slightly alarming...my nose doesn't work well enough to let me know if I start smelling of forgetfulness!! Thanks.

AndrewT profile image
AndrewT

Not sure raspberry_tea, maybe I did know, this morning....erm, let me think! Me 'think', now there is a thought!

Seriously though, memory does get worse, with age-as any pensioner will tell you. More importantly, as far as we are concerned, Vasculitis can, and does-in my case has-attached the brain. I used to work, in a laboratory, as a Quality Controller-you need to be as 'sharp as a knife', in that job. Now, yes I do forget things, not quite how to breath mind! I'm afraid that it's just something we have to live with-like everything else, I guess! At least we are all still alive and have, what's left, of a brain to forget with!

In other words, just put it with all the other 'bits and pieces' (pains, tummy troubles, muscle weaknesses and so on) and be thankful you are alive, I do!

Chin up, raspberry_tea (have a cuppa)

Kind regards AndrewT

in reply to AndrewT

Thank you AndrewT. Which chin should I 'up'? (Joke). You're right of course, I know I'm lucky and I'm off for another cuppa!!

Best wishes.

orsen-trapp profile image
orsen-trapp in reply to

As this is a memory thread, maybe we should all be encouraged to put our best foot forward ... then we can all spend time looking at both of them trying to decide, then forget what we were doing anyway and why ;)

in reply to orsen-trapp

Ha ha, hilarious...but, oh, if only I could remember the last time I saw my feet, there's so much in the way these days. 😂

AndrewT profile image
AndrewT in reply to

Dear raspberry_tea (I still LOVE this name),

You can keep up, as many chins up as you want (have)! A friend of mine, some years ago now, said that her children reckoned 'that she had more ''chins'' that a Chinese phone directory'. I never actually told her that I agreed!!

Glad that you are not offended, by my humour, I think we all need to 'make light', of ''things'', sometimes. did you have your Cuppa? Was it raspberry tea? (I bet you hate the stuff really).

Take care of yourself.

Very best wishes AndrewT

in reply to AndrewT

Never offended by your humour AndrewT...I defo prefer the light hearted approach to stuff. (Usually have to make my excuses when it gets too serious or sensible and I have been previously described as 'a catalyst of ridiculous'!!)

As for the raspberry tea, it's an acquired taste but I'm learning to like it, it has it's benefits. (Still prefer a bug mug of builders tea though.)

Take care of yourself too. 😀

AndrewT profile image
AndrewT in reply to

I think I prefer the 'name' raspberry_tea-I can't imagine you as a 'builders_tea' somehow!!!!! Glad that you are not offended, by my humour-did you read the 'post' by Hamble, the one where some silly bug....so.....fu....idiot told her off. Her crime...to make light of her predicament. This poor girl really isn't well-I do know, the details, but am not/will not break the confidence (this is probably why people do trust me, I DO NOT break confidences/trust, never have).

I was trying to remember what started the conversation off- I THINK it had something to do with erm, erm, what was it...Oh yes Memory! Though it could have been about flavoured tea, mainly raspberry- I think????? Can you remember? Can't rely on you either then!!!!!

Very best wishes AndrewT

in reply to AndrewT

Sorry, I'm afraid I can't recall...Ha ha.

It's odd isn't, how some people react to things, poor Hamble.

When I was first diagnosed someone told me I was lucky because I had a sense of humour to help me get through things. At the time I didn't feel lucky, but now I know what they meant.

Keep laughing (and don't take yourself too seriously)...it's my best medication recommendation!!

(Unless you're recovering from surgery and you're no supposed to...??)

Anyways, Cheers!! I'm off for another brew or two (tea of course).

orsen-trapp profile image
orsen-trapp in reply to

I've really got into the herbal teas since I stopped drinking much caffeine due to the colitis. Have some raspberry leaf tea on the boat but prefer lemon & ginger, especially as the ginger helps with the nausea. ish.

A quite agree, a sense of humour is the only way to live. I even teased my gastro consultant once I found he had a sense of humour .... on the occasion the nurses, he and I ended up laughing during a sigmoidoscopy. No, my guts really don't look that funny, not with Crohn's colitis, but it was just a comment a nurse made!

AndrewT profile image
AndrewT in reply to

Ok, you asked for this.......Dear builders_brew,

What was that line, in 'Life Of Brian'-the Monty Python film oh yes 'Always Look On The Bright Side Of Life'. I like the line 'You come from nothing, you go back to nothing-so what have you lost?.....Nothing' Along with other, such 'gems' as ''My Juniper Bushes''. A very good, funny film which, I don't think was intended to be blasphemous-it just poked fun, at the genre. Have you heard of a group called Jeth Rotull (I think it's two 'l's)? Lines such as 'The Bloody Church Of England, In Chains Of History' Demands Your Holy Presence At The Vicarage For Tea'.

Anyway enough of the 'heavy' stuff man- I like the line from Meatloaf 'Who am I, Why Am I Here? Oh Forget The Questions, Get me Another Beer'. I your case a tea-raspberry or builders, you choose!

Bit of a naughty one, for you. The Vicar, and the Curate, are sitting on a train. The Vicar is doing a crossword "Eight down" he begins "four letter, 'something exclusively female'-last three letters unt. "Um" begins the Curate "I think that would be 'Aunt'" " You know your absolutely right" exclaims the Vicar "you erm, er haven't got an eraser on you, have you". I can't imagine what he put, can you?

Anyway answers on the usual 'postcard' please!

Best wishes AndrewT

P.S. I'm away next week-on holiday!

in reply to AndrewT

Very FUNNY!! (Did I really ask for it, I can't remember??)

The life of Brian is hilarious too!!

Have a fantastic holiday Mr T.

Have you warned them you're coming?! ;-)

AndrewT profile image
AndrewT in reply to

They ALL know me well!

in reply to AndrewT

Ha ha ha...I bet they do! Your inappropriate joke reminded me of John Inverdale's slip of the tongue at Cheltenham this year (he meant to say rose tinted glasses) it's very amusing indeed. Anyway, I think I know which ones (glasses) I see the world through.

Enjoy!!

Hey orsen-trap! I've got a variety of herbal and fruit teas. I'm quite enjoying chamomile at the moment. I think I'd have have the lemon & ginger on 'the boat' as I don't have sea legs (I'm the one hanging over the side looking green regardless of conditions.)

Can't believe you've found a doctor with a sense of humour!! I recently make a really hilarious remark (my opinion) about the 'Singing Detective' and my psoriasis to the dermatology consultant. Not even a smirk.

orsen-trapp profile image
orsen-trapp in reply to

He keeps his sense of humour well-hidden - we got off to a really bad start due to not quite understanding each other (both in terms of language/culture and, I suspect, him being more used to passive patients). However, after he'd looked after me for 3 weeks in hospital we got the measure of each other!

in reply to orsen-trapp

Well done you for keeping a sense of humour for a 3 week stint in hospital...some of us would have crumbled by then ;-)

orsen-trapp profile image
orsen-trapp in reply to

It was 4 weeks in total but one of those was spent at the big hospital where even *my* sense of humour was challenged from time to time :) My husband now knows that if I'm ever unable to speak for myself, consent is withheld for inpatient admission to that particular hospital. My local hospital is lovely and that long stint was the last of 3 emergency and 1 voluntary admissions in a year! That last time I thought I was just in for overnight rehydration :D

in reply to orsen-trapp

Nightmare!!! I hate hospitals. Only had to stay in with pregnancies, that was bad enough. My family tried to persuade me to go to A&E when I was really poorly, but I refused in case they kept me in. I've been lucky that all my treatment and investigation has been done as a day or out patient. Our world would fall apart if I ever had to stay in hospital that long. I don't know how you coped.

orsen-trapp profile image
orsen-trapp in reply to

Husband learnt very quickly how to cook breakfasts for the B & Bs :) I do genuinely like what I'd started calling 'my second home' and from time to time wish I was back there on days when it's a bit of a struggle because there I have permission to be ill (including from myself). I don't like the big hospitals, though.

orsen-trapp profile image
orsen-trapp in reply to orsen-trapp

I was very blessed that I was so dramatically and noticeably ill. Had I just gone to the GP with the symptoms I'd have been fobbed off (as indeed I was in between emergency admissions even though it was clear from my notes that I was not the sort of person who frequented the surgery). In fact, I didn't go about the initial fatigue because I knew that being a certain age ... (and that's what I assumed it was anyway). As for the colitis, it was so much part of my life that I thought it was normal!

Actually orsen-trap, it's amazing how quickly the blokes manage when we're incapacitated. I discovered mine could iron and Hoover too. (Joking aside we're stronger together these days because of vasculitis) Here's to good health! A big tea total bottoms up to you!!

PMRpixie profile image
PMRpixie

I can certainly relate to the memory loss. The most problematic is finding the word I want.

AndrewT profile image
AndrewT

Dear Blueberry Coffee-no that's not it, erm, Strawberry Pie, still wrong, derm, Blueberry Cheesecake-knew I'd get there, in the end!

How are you? I haven't heard from you, in ages, mind you I have been away-so probably my fault!

Are you enjoying all the beautiful, warm, sunny, dry weather? It's alright 'they' are coming to take me away!!!

Hope to 'speak' soon, 'Honey Waffle'

Best wishes (and I mean that)

AndrewT

orsen-trapp profile image
orsen-trapp in reply to AndrewT

Honestly, Andrew-Coffee, 'what are you like?' as they say up here ;)

in reply to AndrewT

Hey, Mr T. How was the holiday? It was noted (by me, at least) that there were fewer humorous replies to my pointless posts.

Isn't the weather just glorious. Perfect, if you're an old toad like me.

Where are 'they' taking you away to?

Anyway, cheers for now and best wishes returned!

P.S. I'm thinking of changing my name...Earl Grey? Lapsang Souchong? Green? Yorkshire? Umm? I just can't decide.

AndrewT profile image
AndrewT in reply to

I know the feeling-I tried, with another group, to start a discussion about apathy.....No body even bothered to reply!!!!!

I think maybe Essex Tea, might be an idea (I don't think there is one but hey-originality and all that!). No wait, I'm a silly a-se, 'Passion Tea' then just enjoy the Double meaning!!!!!

I'll keep you 'posted', about the Apathy Group!!

Best wishes BB (Builder's Brew)

AndrewT

orsen-trapp profile image
orsen-trapp in reply to AndrewT

I know someone whose online name is everything-stops-for-tea; ES4T for short.

Andrew, I'll read your apathy thread one day, when I can be bothered ;)

in reply to AndrewT

I was going to look up what the word 'apathy' meant, but then I couldn't be bothered...or did I forget, either way I lost interest.

I believe passion tea is good for alleviating anxiety and depression...best leave that one alone then, it might work and then I'd have nothing to post on here about.

Ttfn

AndrewT profile image
AndrewT in reply to

I'm sure that you will find 'Something', to moan about-tea too cold/hot, biscuits to dry...Come on, you can do it!

in reply to AndrewT

AndrewT, I think you know I will...

Have a good day :-)

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