LUPUS UK

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memory problems

hi all

I’m 40yo male

I have lupus sle, aps and dilated aortic valve which see surgeons about next month

Does anyone have any issues with memory and remebering things, has become more often last month or so I keep struggling with peoples names who have worked with for years and sometimes remembering what I did day before or couple of days ago, I work as a engineer going to several different sites a day and could not for the life of me remember what sites I had been to it really frustrated me and like said today was talking to a work mate and went to say something about another work mate and couldn’t remember there name which has happened a few times,

I spoke to the nurses while ago about something else and they just dismissed me and wasn’t helpful

any help would be great

Written by

Dave136

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20 Replies

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I have UCTD and yes all that you say about your memory resonates with me. Isn't it awful! I initially panicked thinking I had some form of early onset memory problems other than those associated with a CTD but finally accepted that it was part and parcel of the disease. Drilling down, the memory aspect has two faces for me. One is a direct result of fatigue and the other a result of the time I spend trying to work out what is wrong with me and how I can put it right (exhausting ). I now put in coping mechanisms. Lists! Prompts! Notes to self! Humour, the more I relax about it the less of a problem it becomes. Indeed, the cognitive consequences of these diseases is often less talked about. My biggest problem is often word finding and perhaps actually being able to focus on others for any length of time and maybe that in itself impacts on our memories- it's just harder to concentrate. I have booklets around parts of the house to make notes in - the key is to remember to collate and take the with you - a new routine to establish. Perhaps of little help to you, other than to let you know you are not alone.

Thanks for your comment yeah have been keeping notes on my phone, just find that nurses seem to dismiss concerns I have sometimes

Yes, I agree about medics not taking note of this. I have mentioned language processing problems but no one really takes it up. Google scholar does have some interesting articles on it. Just a thought - have you spoken to an occupational therapist at your local hospital. The specialist nurses could set you up with an appointment. They sometimes have golden nuggets to support just these issues.

Hi Dave136,

I have the same issues and only difference is also taking prednisolone and ramipril for high blood pressure, I have been having the same issues at work and home with very bad memory and also forgetting to take pills and now use Alexa to remind me to take pills and sticky notes in pockets with names of work people the fatigue is just worst mid week and no longer drive. Take care 😀all the best hope for better days.

Thanks yeah tablets have been issue quite a few times I get really frustrated trying to remember if had taken them or not, but have now set my Alexa to remind me at set times, I do worry about work and play down some Things to doctors as don’t want to lose licence as then loose my job, a work mate helps me out when struggling with remebering some things and when struggle to do detailed tasks so luck that way

Sorry to hear about your memory issues I think it is quiet common in sle, i have real problems with names & remembering why I went into a room, I think you should have a word with your doctor & say how much it is effecting your day to day life.Hope things improve soon.

You have APS, are you adequately anticoagulated?

ghicworld.org/

healthunlocked.com/hughes-s...

Is all new to me, I know they said wanted to put be in blood thinners but couldn’t until I had seen cardio as aortic valve was dilated to 49mm but that was 6 months ago and had another scan and now cardio surgeons want to see me which is new month

Hi Dave,

I have SLE with antiphospholipid syndrome - and five weeks ago I had open heart surgery - a single bypass.

I'd been on asprin for years due to the APLS. ( went off it several weeks before the operation )

With me they literally had to get the heart tended to first so I could then get my hands on some warfarin as an - add on blood clotting preventative.

Yes APLS can cause neuro problems - but it's not at all a given that it will. and trust me - nothing can make you more vague than a heart problem.

I'm amazed at how utterly clear headed I've become at this point after the operation. My memory is so much better than it was 6 weeks ago.

My GP said I have better circulation to the brain now. I had no idea how badly one little narrowing of an artery could effect me over time.

What-ho Dave I am an engineer too. It is my wife who has SLE & RA, luckily she does not (yet) have any memory issues, indeed she manages to be my memory too sometimes.The trouble with being an engineer is that you need to know the details and it is the detail that logically lead you to solve problems (along with the experience you have built up over the years). Getting to understand your illness, and contribute to fixing it, is just another problem to be sorted.

A couple of thoughts from our experience -- our rheumatology specialist nurses are very good in dealing with RA problems, indeed they call themselves "joint specialists". When asked directly what training they have had on Lupus, the answer is --- none! They only have local knowledge from the Lupus patients they have dealt with. We all know that Lupus is an entirely different illness to RA. Perhaps they do not appreciate that SLE could be damaging your nervous system/brain in some way that results in memory problems.

We all know how difficult it can be to speak to your specialist Rheumy but you could send an email stating the problems you are having and your worry that it could be caused by your SLE/APS. That way it will be in writing and more difficult for them to ignore it when your next appointment arrives.

The other tip, often mentioned here, is to make a diary/list of the various memory events that are happening to you and present the rheumy with your list when you see him/her. Hopefully, they will then have to take it seriously and instigate some further tests to resolve it.

Hope this helps and lots of luck.

Welcome. I'm 55 in 3 weeks & have been experiencing short term memory loss. I thought it was from banging my head over the years, I'm currently seeing a neurologist, took some tests but we're having difficulty herring a brain MRI. I didn't bother to associate Lupus with my memory loss but sobe you've posted this question I'll have to reconsider. My neurologist is aware of my Lupus and hasn't mentioned a connection, at least not yet. Good luck and until you get medical answers all things are possible

Memory problems are common in both aps and lupus. I also have problems with concentration and sometimes comprehension. I recently had some neuropsychological testing because of this; my mother had dementia so I was worried.The neuropsychological tests didn’t look like dementia but the neuropsychologist said they were similar to results she had seen before in people with lupus.

Are u on any aspirin or antiplatelet treatment like clopidogrel or anything??

Just on hydrochloroquine and azathloprine

I've just started Clopidogrel. Does this affect memory?

Well when I was started on aspirin it helped my memory as it is supposedly meant to thin the blood to the brain, to the parts that affect the memory.Then I was changed to clopidogrel so I'm not sure if it is supposed to do the same thing.

I still have memory issues which are not great, my cognitive function is a problem and it prevents me from doing things such as giing shopping and now I've had to retire at age 43 partly due to my cognitive function.

Hi Dave136. I’m 47 and lupus diagnosed on April and for the last two years I also have memory problems. I work in Finance full time and I do struggle remembering names, words, if I’ve done some tasks or not. I found it’s harder the first hours in the mornings and I have problems concentrating, foggy brain. At nights my brain is more active but it was always in this way so since I was a child I used to do my homework or study at night time. I work with numbers so this also got tricky the past two years as my brain takes longer to do any logical task. I’m taking HCQ since April and changed to another job so partly the stress reduced a lot and it feels better now. I try to write or take notes so I can read them when I need. I also had problems remembering if I had my medication so I bought one of those medication containers that have AM and PM boxes, otherwise I’ll finish taking two pills by mistake. So I take 200mg AM and 200mg PM. My mother tongue is Spanish and although I’ve been in Scotland for 20 years I have problems remembering many words when I speak both in English and Spanish. No easy to have memory problems or fogged brain

I spoke in length about this with my Lupus nurse the other day. Over the last year my memory is shocking to the point of it becoming a major concern.

The Dr's are looking into this, but their first thoughts were that I may have depression (which I most certainly don't) or that I'm worrying too much - which I wasn't up until my recent TIA. But I'm quite certain that it's the lupus that's causing my forgetfulness. I'll watch an episode of any series and a couple of nights later when starting the next episode will have forgotten how it ended.

I must agree that some forgetfulness comes from having too much on - work and personal life, but a lot does come from our condition.

Hi Dave, I’m a 41y.o. female with SLE and APS, I have terrible memory problems too. It gets worse when I’m tired or sick; even something like a simple cold can completely take me out. I don’t forget people’s names as you described, but I take on very simple tasks and do them completely wrong. Ironically, I can do very complex tasks and execute them extremely well! Just can’t remember which takeaway shop to call for dinner… 😂🤣

I forgot the name of a ln ex Liverpool player last night. I was disgusted with myself. They're my boys! I remembered the dance he did every time he scored, but the name I just couldn't get. But then just randomly this morning, the name came back to me.