I've recently changed drugs - from mycophenolate to Ciclosporin - because mycophenolate wasn't effective in controlling my lupus anymore (after only 18 months of taking it).
I've taken Ciclosporin for 2 weeks when I woke up with my right eye having something similar to tunnel vision in reverse - i.e. I could see in the centre but the peripheral vision was blurred. I went to the eye clinic on an emergency appointment but by then things resolved. Vision was checked and it was ok. Ophthalmologist said that it could be Ciclo but to continue taking it, which I did.
Two weeks after that the rheumatologist increased the dose a little, to bring me to a therapeutic level. The day after increasing the dose my left eye became blurry and I noticed that my left eyelid was difficult to open during the night/after sleep. I put it down to the side effects and continued for about a week but it didn't go away, so I went back to the eye clinic. Again all vision tests were fine. I was told to continue with Ciclosporin but I chose to stop it. I also stopped Plaquenil in case that contributed to the problem.
Because I insisted that my peripheral vision is still not right, I was referred to have a Goldmann tests for visual fields (which is a bit more specialised than the one you can have in a normal ophthalmology/optician visit). The results came back that my vision is fine but my visual field is hampered by lowered/droopy eyelids.
The ophthalmologist suspects that the nerves controlling the eyelids have been damaged by Ciclosporin. He believes that the effect will go away at some point. I, on the other hand, am totally freaked out that this will turn out to be a progressive damage and I'll end up not being able to open my eyes period!
I've had a brain MRI today and will see the neuro next week to see what it shows.
The reason for my post is to raise awareness of the potential neuro-toxicity of Ciclosporin. Remember, however, that no one is the same - this drug has been successfully taken for lupus by many people who didn't have any such dramatic side effects. Even for me it has been fantastic for my lupus - but the downside is pretty critical to me, though.
If you're being prescribed this drug, it may be worth monitoring your visual function while you take it and stop it as soon as you notice something's amiss. I've trusted the doctors who said I should continue with it and now my left eye is blurry and both eyelids can't work properly. I'm hoping it won't progress but who knows.
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Purpletop
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Gosh what a lousy thing to have to happen Purpletop. These drugs we take can be so toxic it does scare me because my body is so sensitive to them all.
I have a friend who took Cyclosporine for RA and I don't think she coped well with it either but not because of the eye problems you have suffered. But as you say it's hard to know what to hold onto and pass on because one person's bad experience of a drug can be offset by another's very positive experience.
Are you flaring badly now you are off your two disease modifiers or did you get back onto the Hydroxy once you realised it wasn't responsible? I do hope the eye problem resolves very soon for you. Twitchy x
I'm in a conundrum regarding meds at the moment. I haven't started the hydroxy again, the rheumatologist said to wait until things resolve with the eyes. Meanwhile lupus is making itself felt - random joint pain and dizziness for the past few days. Rheumatologist agreed for me to start a course of Prednisolone (6 weeks starting at 15mg) but I'd like to see the MRI result first.
I've been wary of side effects generally but there is nothing that prepared me for such a serious impact from ciclo. I'm now reluctant to use any drug but I'm conscious that lupus compounds its effect, so the more I stay without drugs to control it, the worse the symptoms will become.
I'll see what the MRI says but it is likely that I'll start steroids for a while, allowing the body to eliminate the others properly. Then if all ok, re-introduce hydroxy. After that I don't know.
I completely relate to your concerns Purpletop. I'm considering hard whether to stop taking the Duloxetine/Cymbalta I started taking three weeks ago because of side effects. But there are benefits too so it's going to be a difficult conversation I will have with my GP on Friday - trying to decide what is best. Reading up the withdrawal effects of stopping this drug sound potentially horrific and is making me feel scared about staying on it for any longer - but equally rather terrified about coming off it over the Xmas period too.
When you've had a serious drug reaction it's very hard to contemplate taking anything beyond the tried and tested - and even they can produce new sensitivities out of the blue I've found. I don't know whether you have Sjogren's with your Lupus but a woman on the BSSA helpline told me the other day that it's especially common for those of us who don't produce much saliva, tears or much sweat to have more side effects to meds because we aren't releasing the toxicity as effectively as most people do. This made complete sense to me so I'm drinking water like a fish just now - as this is the only method I can think of to minimize side effects of all drugs.
For what it's worth my optician and my rheumy both explained that Hydroxy toxicity shows up very specifically in the eyes. So it should be clear to your opthamologist whether or not the Hydroxy is effecting your vision or not. I do hope your Lupus calms down for a while at least while things are considered but glad steroids are an option for you at least. Twitchy x
The toxicity isn't in the eyes - my eyes are fine. It is the nerves commanding the muscles that operate the eyelids that are affected, so a brain thing. That's why I should see a neuro-ophtalmologist, rather than an ophthalmologist, then a neuro. But no one tells you who is best to see - gp sent me to the rheumatologist, I took myself to the ophtalmologist and asked the rheumy to refer me to a neuro. At that point he should have said - you need a neuro-ophthalmologist instead - but no. I'll see what the neuro says first but if I don't get a satisfactory response I'll take myself to a N-O privately if needs be.
Great tip about the water!! I haven't thought of that, good point.
Well I haven't got anywhere yet with the lip biopsy because I suspect the excessive mouth dryness is being caused by the Duloxetine as a listed common side effect.
I have at least got a date now for the neuro tests, which include an MRI of my brain and EMG etc - for the 16th Jan. I did ask if there will be any biopsies done but she said not at this stage. I think I'm being tested for immune mediated neuropathy using a serum blood test but not 100% sure. I looked this up as he said the name of the test but I've forgotten what it's called again - maybe looking for CIDP - which would make complete sense of many of my symptoms and maybe lead to IVIg infusions or Mycophenlolate.
Part of me is hoping that I will qualify for more drug intervention but part of me, especially after your recent experience, is hoping not. It certainly plays havoc with us psychologically on many levels I know - especially when we are having to be referred from pillar to post - but not necessarily the right pillars or posts as you are finding!
Good luck with it all and glad for your sake that at least the private N-O is an option if the NHS fails you.
Oh the cruelty of this illness and the drugs!. So sorry to read of your eye problems with Cyclosporine!. I'd be interested to see what your Rheumy says as Hydroxy can cause eye problems. Best of luck when you see him to discuss your MRI results and I hope your eye problems can be resolved along with your Lupus treatment!. Take CareX
My rheumatologist hasn't really contributed to this other than agreeing to stop the drugs. He is puzzled by what the ophthalmologists say regarding both ciclosporin and Plaquenil. He has several patients on ciclosporin without any problem and has never heard of such an effect on the extraorbital muscles. As for Plaquenil, he can see how ciclosporin could exacerbate hydroxy's side effects but as far as he was concerned he's never seen any nerve toxicity such as this.
But my rheumatologist is quite prudent, so if others are saying that these drugs are a problem, then sees that at this point in time I'm coping ok with the lupus, then he is fine with the drug withdrawal for now.
I'm seeing the neuro about the MRI. I'm imagining all sorts, t be honest. I'm hoping that even if damage was done, it can be reversed and it isn't progressive. Each day I'm expecting to wake up unable to open my eyes or have seizures - one never knows with brain damage.
When do you see the neuro about your MRI results?. Lupus can affect the nerves greatly, it has with me so there might be a possibility it's not the drugs!. It's good you can take steroids while decisions are being made and they are an effective treatment for nerve effects so you might get an improvement in your eyelid symptoms. It could be good info for your Rheumy if he's not sure!. Fingers crossed for you and keep us postedX
I haven't got any advice as I'm just at the start of my journey but just wanted to send my thoughts to you. It sounds very distressing and frightening not knowing what is going on. Hope you get some quick answers and treatment. All the very best to you
Thank you very much for your kind words. Things are not progressing well, symptoms are worse and finding medical specialists to listen during this period is proving challenging. I'm thinking of camping in the A&E department of my local hospital...
I just saw this thread, purpletop after seeing your post on another thread by someone else.
How are you doing? Have you managed to get the MRI results? Is your symptom improving?
This is a very useful post. Thank you so much for your courage to speak out.
Symptoms are the same, save for the eye orbit pain that has now gone. The MRI was normal. Both the neurologist and the neuro-ophthalmologist say it couldn't be the ciclosporine but they can offer no explanation for the symptoms either. My rheumatologist is now thinking that lupus could have caused the symptoms, so he has put me back onto mycophenolate because this drug deals with neuro symptoms. I'll see how the symptoms fare once the myco takes effect in a few weeks time. Really unsettled by all this - not knowing what caused it is difficult to get head around what to do next.
Hi Purpletop
Thank you for your prompt reply! Drooping eyelid..it sounds almost as if you had a "stroke" ..hence you had to have MRI? I would personally think that the Rheumatologist (who prescribed this medication) would have a duty to report this type of serious drug reaction to the relevant agency. It's "interesting" both Neuro and Neuro-Ophthal specialists (two together) are almost trying to convince you it's not from cyclosporine. You had a sudden droopy eyelid as soon as you started taking cyclosporine and you "feel" it's "probably" from the drug. The problem seems to have been swept under the carpet as soon as MRI was found to be "clean", to put it bluntly. I too, see a Neuro ophthalm and wondered... x
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Hi guys second opinion neuro today 
Neuropsychiatric lupus (NPSLE) or neuro-lupus: What is your preferred terminology?
