Twitching eye: Hi All I have been reading this... - LUPUS UK

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Twitching eye

Claire12 profile image
16 Replies

Hi All

I have been reading this great site for a few months. I am in the process of a Lupus diagnosis having first being diagnosed with GCA/PMR. I take Pred ( now at 7mg from 40 last November), Hydroxy 400mg, aspirin and Calcichew. Since my most recent Rheumy visit on Tuesday I have started on Methotrexate and Folic Acid taking my first doses on Wednesday and then Friday. Yesterday my eye started to twitch, bottom lid, it is still doing it. Its just irritating really with no pain at all. Has anyone else experienced this and does it go away??

Thanks everyone.

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Claire12 profile image
Claire12
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16 Replies
wineandlattes profile image
wineandlattes

Hi, dont kniw if this helps, but I too am waiting for a diagnosis so I may/may not have lupus. I have a twitching right eye, on my top eyelid , and also twitching left toes. Had the twitching a few months now. Rheumy didn't seem bothered by it. Had to see an eye specialist last week as I've been having pain, sensitivity and blurred vision in my eyes, was referred by my optician. Got all clear, just got to go back in two months for a peripheral vision check. She didn't seem concerned at all about the twitching, and said all the other symptoms sounded like eye migraines. I think the twitching is just my nerves, seems to get worse if I'm stressed , tired or having a flare. X

Claire12 profile image
Claire12 in reply towineandlattes

Thanks-I was wondering if it was just tiredness or the new meds!! I have had recent eye checks etc with nothing significant. Good luck. Cheers.

Purpletop profile image
Purpletop

If you've never had it before and it had only appeared now that you've started a new medication, the medication is the most likely culprit. It will probably go away after a week or two once your body gets used to the drug. But mention it to your rheumatologist anyway and keep an eye for other neuro symptoms too, just to make sure the drug doesn't get too 'toxic'.

I'm on mycophenolate mofetil and it causes twitches in my case. But they're not continuous, so I don't get worried about them anymore. We each respond differently to drugs, though.

patient.info/doctor/blephar...

I have some kind of auto immune disease that is proving hard to classify ( most recent suggestions are Behcets Syndrome or spondyloarthropathy ). I have been having problems with my eyes for the past 2 yrs ( blurry vision and inabitity to open eyes in the morning ). 6 months ago this morphed into full blown Blepharospasm ( a type of dystonia ). My eyes go into spasm and twitch, I can't open them for up to 5 mins. I have had to give up my driving licence.

I am not saying this is causing your symptoms but it's probably something you should be aware of and have it ruled out if your symptoms don't settle. It has had a profound effect on my life and left me angry at how dismissive Dr's were about my eye symptoms when I knew something was wrong.

1TeiaMarie profile image
1TeiaMarie

I too had this happen an am on the same meds but one plus I'm on way more! I told my rheumatologist nurse an she just blowed me off an said call your regular dr an just asked when was the last time I seen my eye dr I said a month ago! An that was it!! If anyone finds out anything that would be great!

Claire12 profile image
Claire12

Thanks all-I am keeping a close 'eye' and an accurate record. Really helpful to have all this background. Much appreciated. xx

bestbuddy profile image
bestbuddy

If you research magnesium deficiency and muscle/ eye twitching you may find what you are looking for. Magnesium supplements are easy to take and cause the muscles to relax and are not harmful.

I take magnesium citrate, put flakes in my bath once a week and have an oil which I rub into my skin....all really helps to relax the muscles.

Claire12 profile image
Claire12

Thanks everyone for taking the time to respond. I love the wealth of knowledge and experience you all bring it's great for us 'newbies' . 😉😉

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Claire12,

Welcome to the site, thank you for posting.

I hope that you find the Methotrexate helps to alleviate your symptoms. Does the patient information leaflet with the Methotrexate mention anything about twitching eyes?

Claire12 profile image
Claire12

Hi Paul

Thanks for your reply-the leaflet mentions eye irritation - so I guess ' when does a twitch become an irritation' is now my question!! its my second dose tomorrow-the twitch only lasted 48hrs ish so I will continue to monitor but b all accounts if that is the only side effect I will consider myself extremely fortunate.

Cheers

Claire

Fennella02 profile image
Fennella02

I started MTX 2 years ago. I was very nervous of starting DMARDS so super-cautious about any side effects. I did notice that my eyes were so sore and blurry that I was struggling to see properly for the first three days of each week after taking my tablets. My Rheumy was totally dismissive telling me that it was not a common side effect (I had quite a few others too) and showed frustration when I refused to take it after just 5 weeks.

Many Lupus people are super-sensitive to drugs - even those that can be bought over the counter. I hope your eye problem settles soon. Best wishes. Clare x

Claire12 profile image
Claire12

Thanks for your reply-It didn't happen after the second dose -instead noticed about 48hrs of very low mood and inability to 'think'-I was advised at the hospital yesterday to take it in the evening-so did that last night-so far so good....just waiting!! Cheers and all the best to you. BTW were you offered an alternative? What do you take now?? Clairexxx

Fennella02 profile image
Fennella02 in reply toClaire12

I went on to Mycophenolate. If I'm honest, I wish I had persisted with the Mtx. Many people do very well on it and its just 1 dose of small tablets, once a week compared with 3 very large ones every day. They don't go down very easily at all for me. I'm not sure that my bone marrow would have withstood the Mtx as my bloods are always low. My rheumy offered no resistance to the change so I think he anticipated problems. Best of luck xx

Claire12 profile image
Claire12

Thanks again for your response-and good luck.xx

Jennyria29 profile image
Jennyria29

I’ve been on metho going on 4 weeks now and MY eye just started twitching two weeks ago my left eye bottom eyelid it’s driving me nuts I’m pretty sure it’s got everything to do with this medicine!!

AliSpecialis profile image
AliSpecialis

I just started meth, and I’m also experiencing the eye twitch thing. Here’s an article that says that this side effect is seen mostly in women under 60.

ehealthme.com/ds/methotrexa....

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