[Asmo83]

I was diagnosed with SLE about 4 months ago, been on plaquenil ever since. Ever since I have found my memory is terrible, Like I am going mad, I used to pride myself on having a good memory, now I struggle to recap a conversation had a few hours earlier. I am also finding it hard to differentiate between what actually happened and dreams, forgetting names, and simple tasks. Is this the medication?

On another note, Whenever I open my eyes after having them closed for a period of time, it takes about 10 seconds for my eyesight to return to normal. Is this normal or common?

thanks guys!

 

[sam101360]

Hi:

The memory issues are probably from Lupus, we call it a Lupie Fog...everyone here complains of the ssame things.

Still since every one is different I would definately mention it to your Rhumy as a symptom.

Did you have a baseline exam on your eyes before starting the Plaquenil? Although eye toxisity is rare, you should always have your eyes check by an Opthomologist every 6 months while on the plaquenil. I would suggest you ask your eye Dr about this one.

Sorry I couldn't offer more, good luck - let us know how you are doing, if you remember (LOL).

Stephanie

 

[sjink]

Hi

I have dry eyes because of Sjogren's and it takes a while for my eyes to get a focus sometimes. Saline eye drops help with this.

My memory is very poor at the moment, but lupus is flaring. Memory comes and goes as the lupus waxes and wanes.

As Stephanie says, it is best to mention new symptoms or concerns to your Rheumy. It is sometimes hard to work out what are side effects and what are lupus symptoms I find.

Love
Sara x

 

[bluedolphin]

Hi. I was diagnosed only about a month ago and I have the same problems. I am taking 400 mgs of plaquenil every day.

I have the memory problems and sometimes just feel like I can't wrap my mind around things. I definitely feel like I am in a fog.

I haven't had my baseline eye exam yet but I am going to soon. I am having a lot of trouble with my vision though. I feel like it is getting worse quickly. I have a hard time focusing on things. I think that I am going to have to get some glasses when I do make my appointment.

I was planning to mention all these to my rheumy when I go see him in 2 weeks. Sorry that you are having the same troubles, maybe we can figure out whats going on.

Love,
Tracy

 

[fenrus]

I had vasculitis problems in my eyes, which has led to permanent blind spots. Good idea to keep an eye on it. No pun intended.

I saw an optometrist and he immediately found something wrong and referred me to an ophthalmologist appointment for later in the afternoon in the same day. The next day I was admitted into the hospital for IV prednisone treatment.

 

[halfpintfl]

Hi there, guess what? You are normal. My memory makes
me so darn mad sometimes, I forget what I am saying
right in the middle of a sentence. Yes brain-fog goeswith
Lupus. I was advised to use post-it's all around the house,
but I would forget to look for them. You said that you are
on Plaquinel-4 months now. It takes from3-6 months to kick in they say. But for me it took 9 mos. And , yes ,we are supposed to get our eyes checked. I don't know if i have
helped, but I hope so. Be well, smile, and go slowely.:wink2:
P.S. Always report anything new to your Rheumy
it may be very important.​

 

[marybeth59]

useful thoughts

Hi
I am fairly new on here, so have been browsing through here to find similar symtoms to my own I have memory and concentration problems which have been worsening lately, and am going to the eye clinic for the second time tomorrow, because of worsening eye sight. I take plaquenil, aspirin, and actonel. Its nice to know that I am "normal". My rheumy is really good and knows her stuff, so that helps.
Keep smiling

 

[ctkron]

Me too

Hi-
Yeah, me too. Fortunately. at least for me, the brain fog comes and goes. I'm a teacher so I cannot afford that feeling (cause those kids eat you alive if they notice you're off a bit:lol: Anyway, I fight through it as best I can and gear up for a better dayIt definitely gets depressing and wears you down though. Just understand it's all part of this and you can have better days on the right meds and even remissions. That's what you look forward to...

Cindy

 

[granny weatherwax]

Hi Asmo83

Welcome to the site. I can so understand your frustration, I used to remember everything but gradually over the last 4 - 5 years my memory has gradually got worse even before the Lupus diagnosis. I would get so frustrated with myself for forgetting things. It would so get me into trouble with my previous boss.

I am now getting close to accepting this is just part of the deal... I called a box of tissues a box of chocolates the other day much to the amusement of my colleagues , and I check the door several times when I leave in the morning as I can never remember whether I have locked the door or not:worried:. I also find it hard to complete sentences as I can't think of the words I want. This does frustrate me, particularly when my husband tries to help but doesn't. I now walk away from the conversation and then come back as and when I remember.

I do find it is worse when I am flaring or extremely tired and I have trouble focusing my eyes on stuff when I am tired too. So I now put it down to the lupus.

The guys on here are really helpful and can give lots of great advice.... keep posting

Hugs
Claire

 

[Surferboy]

Woah! This is kind of worrying. I had a bad memory to begin with so hate to think how bad things will be in the future!

Is there any medication to help with this "brain fog" and memory loss? COuld it be a sign of the lupus affecting the brain?

 

[Katharine]

Surferboy, I am stalking you :rotfl:

Brain fog is a recognised part of lupus. Nobody really knows why and NO it doesn't necessarily mean brain involvement. CNS lupus, for example is very rare in people with lupus.

It is also very important to remember that brain fog can be made significantly worse from pure exhaustion.

I had pretty severe memory and concentration problems yet my EEG and MRI were as clean as a whistle (well almost, apparently there's some rust or something "usually foud in older subjects" but that's another story and nothing to do with lupus :lol.

My problems improved significantly when my body got rest again (by the time I was diagnosed I hadn't slept properly for two years) and improved further once the disease activity was brought under control. I'm still not quite like before but you have to put this in perspective. I went for eight or nine years with no treatment and my disease activity is of the kind that is relatively difficult to control. Now, I just have to write everything down. Fortunately the concentration is the bit that improved the most and I can now work again (my job is mentally taxing).

If you are OK now and can still work easily, there's no reason why you should suddenly become any worse. Like everyone, eating well, getting enough greens and fruits (i.e. vitamins and minerals) through your food, is probably the "best" thing you can do to help.

Katharine (your freindly neighbourhood stalker )

 

[Surferboy]

Katherine stalk away :lol: I like stalkers. It makes me feel wanted and like royalty 8)

As for the greens and fruits - perfect as I'm a hippie tree hugging vegetarian :hehe:

 

[ALWIN]

I have always had a bad short term memory.

It seemed worse before and after diagnosis, but i had got very tired by that point. Then I think actually getting a dianosis was a bit of a shock that affected me more than i realised.

These days i still have a poor short term memory, but I find it a lot easier to find the names for common items than i did before and after diagnosis. It was deeply embarassing when i struggled, and I even started to develop a bit of a stammer as i hunted the recesses of my brain for simple words.

I do not know if the medication is responsible for the improvment, but I am not nearly so bad these days. If it is the medication - fair enough. However, I believe much of my improvment has happened gradually as I regained my confidence and got out and about a bit more again.

No stammering either - though i have days where I do some spectacular spelling mistakes and repeatedly hit the wrong keys or something!

 

[bridie]

hi i thought it was me going a bit daft..the other day i was sitting talking to my mate WHO ive known for about 20 years we were talking about her son and you know what i couldent remember her sons name i felt so stupid my face went red.and then there is times were im in a conversation and say wat were we talking about now thats embarasing.and my eyes feel as if there is a gooey film over them im always rubbing them then sometimes they are really dry...every time i go to my rhumy i forget everything its a good idea to write everything down but i forget to take it with me so thats me stumped.and the more i try to remember it makes me worse.i hope everone can understand wat im trying to write i get all mixed up and wen i look to see if it looks alright it seems all mixed up..but i cant be bothered typing it all again..so can someone let me know.do you know when you read something about wat someones got and think oh yea that happens to me.GOOD LUCK IN UNDERSTANDING THIS MESSAGE.bridie

 

[ALWIN]

Hi bridie

The gooey film you get in your eyes is a classic symptom of dry eyes. Tears are made up of water and mucous, etc. When your eyes are dry there is too little water, so the mucus is concentrated and forms strings / a film. I can hook out great stings of it sometimes and I get blobs making my eye sight blurry, but I am an expert at hoiking it out now!

Dry eyes can be helped by over the counter eye drops in the day time - just ask the pharmacist for the right ones cos I can't remember the name of mine, but I just get them at Asda's chemist now for 'much cheapness'.

My eyelids stick to my eyeballs at night and it hurts like heck if I wake up suddenly and open them straight away - they sort of 'rip' open and it stings for a bit! To stop this the ointment is good if you put it in before you go to sleep - lasts longer than the drops.

I don't think dry eyes are uncommon. Mine are apparently caused by Sjogrens Syndrome. If you have not mentioned it to your doctor, remember to do so next time - could you write it on your hand so you don't forget?!

I always forget the names of people, but then i always have done.

I understood everything you wrote!

Take care.