Hi all, just wondering if anyone has been diagnosed with this? Went for regular optician check up on Monday and was informed I had papilladema. Optician made urgent referral to eye Hospital same day who confirmed the same and was the referred to my local hospital the following day for urgent lumbar puncture. Consultant requested 2 different types of brain scans before agreeing to carry out lumbar puncture the next morning (yesterday) three attempts to do LP yesterday but all unsuccessful. Very painful experience and quite frightening as the inexperienced doctor attempting to do the procedure was literally all fingers and thumbs to the point where registrar stepped in and took over. Still unsuccessful though as needle not long enough! They then booked me in this morning for procedure to be carried out by anaesthetist however I’ve just been sent home and told to come back tomorrow as no theatre or anaesthetist available.
I’m just wondering if anyone has experienced anything similar? Is it lupus related? I’m currently on 400mg of hydroxychloroquine, can this medicine cause papilladema? I’ve left message on my Reumy advice line voicemail but it normally takes a few days for a response.
Also, the optician mentioned that new recommendations for people taking hydroxychloroquine is for eye checks to be carried by eye specialists not regular opticians. I have previously mentioned this to my Reumy but he dismissed me and said to just have 6 monthly check ups at my normal optician.
Thanks guys.
Any advice is welcomed right now as it’s been a bit of a scary week so far!
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Jo1974manchester
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Do you have GCA? You need to rule it out as a cause. Intercranial pressure is a common cause and the source of that pressure should quickly be determined. Best of luck with your health improving.
Thanks for your reply Roarah. Not got GCA as far as I know they haven’t found the source of the increased pressure despite various scans which is common apparently. One of the consultants suggested it could relate to Sjögrens but nothing confirmed. I just thought maybe the medication but who knows?
Hi Jo! Papilledema can be caused by anything that increases pressure in the cerebrospinal space. This can be inflammation of the brain, increased blood pressure, bleeding, masses or just for no reason at all and this is called idiopathic increased cranial pressure or formally known as psudotumor cerebri. It’s pressure behind the eye pushing inwards causing optic disc swelling. If the papilledema is only on one side then your docs would have to think about optic nerve problems. Is your vision okay?
Plaquenil typically is associated with retinopathy which is different. Your retina coats the back of the inside of your eye and allows you to see. Toxicity is dose and time dependent with the risk increased after 5 years of use. You should ideally see an ophthalmologist for screening. They will do a retina scan once, repeat in 5 years and then yearly after that. Some opticians have retinal scanners but it’s not common. I see an opthalmologist and he does annual retinal scans for me.
LPs are difficult to do if you haven’t done tons of them and docs are notoriously super nervous because it isn’t a trivial procedure. I’m glad it sounds like your next go round will be image guided or done by anesthesia. CT was to make sure there was no brain swelling or chiari malformation (where your brain squeezes through the skull) before procedure. An LP for you should be done lying down. They need opening pressures and if high without any other causes, they will call it idiopathic ICP. I pray this is what is causing the problem as it’s easily managed. They should take some fluid too and send it off for cytology/cell count.
Please keep us up to date and let us know how you’re doing. Sending hugs your way. ❤️
thank you for your reply. My optician (specsavers) offer a CT eye scan for an additional small charge and together with other imaging tests is how they discovered the distorted optic disc which he explained is caused by pressure behind the eye. So I’m extremely thankful for such a thorough examination. The hospital have also been really thorough, trying to rule out brain tumour, abscess, infection etc before opting for LP. One of the scans showed very small bleed behind my eye which was why they followed up with 2nd scan but injected me with dye. They were checking for clots as the lumbar puncture and release of spinal fluid pressure could cause clot to move. Thankfully no clots were found. Exactly as you explain in your message, the LP to check pressure is to be done whilst lying down which I think is what caused the problems yesterday, advice is being sought with anaesthetist I believe as to whether LP whilst sat up is possible. I won’t know about this until tomorrow. I guess I’m trying to find a cause in the hope it can be treated without the lumbar puncture.
I’ve had a lumbar puncture, which I refused several times at first, only to be guilt tripped by a young registrar who said he couldn’t sleep that night if I didn’t agree.
It went fine, with local anaesthetic, so I’m sorry yours has been so problematic.
On the question of eye exams and hydroxy, I see an ophthalmologist who does all the bells and whistles to check thoroughly. The only eye problems I’ve had are cataracts, and he was able to refer me direct to have them sorted.
Hi jo..I'm in exactly the same position as you. I have lupus and APS and have recently been seen by opthamology who said I have papilloedema. That was November. I had MRI scan but am still waiting for neurology appointment for LP. ..v nervous about this as am on warfarin.
I have been having awful headaches and problems with my concentration and memory
Hi hebdengirl, that seems a while to be waiting for your LP!! although I now realise waiting for the right people to do the job makes such a huge difference! I had mine successfully done yesterday afternoon in theatre by an anaesthesiologist team......and when I say ‘team’ I mean 5 people! Junior anaesthesiologist, 2x anaesthesiologists, a consultant and a regsistrar! Oh....and my doctor from the ward came in too so she could take some samples. It turns out I was a more tricky case as my discs are compressed. Anyhoo....they performed the procedure and reduced my pressure by 50%! I’m not going to lie, it wasn’t a pleasant experience but knowing I was in safe hands really helped! Almost immediately I felt like a really heavy weight had been lifted off my head which was weird as I hadn’t really noticed how much pressure was pressing on my head! Spent a couple of hours lay flat on a bed on the ward then after a cup of strong coffee and a little while waiting for test results (which were all perfectly normal 😁) I was allowed home! My back is a bit achy today and I’ve got a dull headache but apart from that I don’t feel too bad at all. I also have some medication called Acetazolamide which is a diuretic that targets brain fluid (and treats altitude sickness!) got follow up appointments with eye hospital and a neurologist next week. I can’t believe all this came about from a regular eye check up! Who knew?!! 😲 I’m so grateful for our NHS! I know it’s not perfect but my goodness I feel like they have gone above and beyond for me this week and I could possibly owe them my sight....or more! As dramatic as this may sound....the whole thing has given me a new perspective on life. My goal is now to live my best life, yes I live with a sh@t load of pain, have days when I’m bound to my bed but I’m not going to dwell on those days, I’m going to focus on the good days and do my absolute best to achieve everything I can in life 😀 sending everyone positive energy and gentle hugs xxx
Just wondered how you are doing. I saw neurology specialist on joint rheumi/neurology clinic last week. He prescribed acetazolomide without the LP....too risky to stop warfarin to do it and too risky to do LP whilst on it.
I've had 3 tablets so far and I am feeling a bit better but maybe that's psychological???
Hi there hebdengirl! Whatever the reason I’m glad your feeling a bit better! I’m not doing so good unfortunately, vision loss is getting worse by the day as are the head aches and wooshy noises! I’ve been on the Acetazolamide for about 10 days now and have had various scans including an mri scan this afternoon and saw the eye specialist last week who confirmed the pressure hasnt decreased, papilladema still there.
After having the lumbar puncture and draining off the excess fluid I felt absolutely brilliant but sadly this only lasted 2 days. Symptoms returned but have worsened 😣. I’m a bit uncertain where I go from here now, it’s been suggested to have a further lumbar puncture this week but I’m worried that symptoms may worsen even more. Seeing neurologist on 19/3 so I guess I’ll wait and see what they say. Still trying to stay positive but not going to lie.....a little bit worried. From what I have read, the medication we’re both on seems to be the one for the job so I think we just have to make sure we keep taking it. I nearly ran out last Friday as my GP couldn’t prescribe it as it’s a ‘red’ drug....or something like that. He had to ring through to the hospital to issue another prescription. So I would say just make sure you know where to get your next prescription from, your gp maybe able to prescribe it but just make sure. Please let me know how you’re getting on xx
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