I am starting to get very worried. I have been on a once a month infusion for Actemra while reducing my prednisone. I have absolutely not head pain. The problem has been for months my eyes. I thought it was just dry eyes. I went to my eye doctor several times, the most recent he perscribed
Steroid eye drops for a week. It made my eyes feel a bit better. I also have been putting in drops to help with the dryness. I feel sometimes that I am going blind. Hard to see things, blurry vision and my eyes look half closed. Friends always say I look tired.
I am at 3Mg of prednisone a day. My sed rate and CRP is great. Can this still be affects of GCA? I really don’t know what else to do at this point. I just know that something is not right. It almost seems that my eyes have gotten worse since doing the infusion . I did not see it listed as a side affect. Any help or insight would greatly be appreciated. Happy new year!
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Plains
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It could be a persistent infection. Mine have been like this, on and off for a couple of years, they need, drops and strict hygiene, no eye makeup or they flare up. Antibiotic lotion helps but the GP refuses it. I got the abx in Australia and my eyes improved considerably. I do think Actemra made all sorts of infections lock in. I have been off it for 6 months. I still have the problem. It seemed to be my lids, no blood shot eyes or anything, some discharge and heavy, swollen lids.
I was thinking it may be an infection but the eye doctor a few weeks ago would have said something. He did prescribe steroid drops, which helped. After a week off of them the same issues came back. I am now putting drops in every few hours. Have a nice day and happy new year!
Try using wipes regularly over each eyelids and bottom lids too. Be thorough. I’ve been doing this regularly, it helps. Good luck
Hello Staplehurst, May I ask which wipes you are using to clean your eyelids/eyes? I also use compresses of cooled boiled water regularly plus many drops for dry eyes during the day and Xailin ointment at night.
Morning, are you in the US, if so you may not be able to buy the wipes I was using. I'm England. However, when I run out of them I just used the round makeup pads. Soak them in warm water and wipe across the eyes. Seems to have worked for me and a better alternative than paying for the special ones....not sure if the pads we buy have something impregnated into them. I think my condition is Blepharitis. My eyes felt sore and watered a lot.
Just try and see how you go. Don't panic about GCA (easier said than done, as I have it too)
Thank you for your reply. I am in the UK. I have Sjogren’s and blepharitis and uveitis… I have RA. I do use the pads already. It’s difficult reading with such problems. Am on Tocilizumab weekly injections for RA treatment.
How horrible for you, you have a lot going on. RA is awful and no respite. My sister in-law has it too and on a drug (been on it for yrs) she told me she'd never know she had it. I think it's spelt Arava. She has to have regular blood test to check her liver function.
I have PMR/GCA. Happy to report though that so far on the tapering regime I'm presently using all seems good.
The reason I thought you were in th US you used the word gotten and not just got. My niece is in US and uses that word like all American's do. Is there such a word as 'gotten' ?
You got me thinking this morning. Gotten is a word used in US and Canada. It is a real word but not used in the UK. At least that’s what I read. It’s 7 a.m. here and you already have me looking things up! That’s a good thing. I love having “friends” from all over the world
It is the past participle of to get and probably derives from the English spoken by the Pilgrims and taken from the UK to the North Americas. Many of the terms British English speakers get uptight about were actually introduced from England in the 17C and preserved in American English but not in other forms of English
As was the spelling. Originally in UK English the word labour didn't have the U. It was added in the UK during a time when French spelling was in vogue and the U got added to several different English words. However, the change never made it across the pond, so the US version still uses the old English spelling of labor, and other words such as honor, etc.
I assume she has private insurance then? I used to pay for my medication in German - but was then reimbursed by the insurance company. But leflunomide isn't particularly expensive - about £20 for a month's supply of 20mg/day
No, I speak fluent German - far more use where I live. This region was part of the Austro-Hungarian empire until the end of WW1 when the Allies, in their wisdom, handed it over to Italy as a thank you present. In some ways their actions provided a foundation for WW2. 95% of the residents in this valley identify as German speakers.
Well, I didn’t use the Americanism ‘gotten’… you must have confused my post with someone else’s… I have/had PMR symptoms but the GP and rheumatologist said I didn’t have PMR… without any tests. They always blame my RA for everything. Of course RA is such a nasty life-changing disease, so having a complex medical history (have hypothyroidism as well plus….) it’s more difficult for medics to make a further diagnosis. They really should investigate further… they don’t.
Am going to have a hip replacement operation scheduled for 1st February. Dreading it because it’s not only a hip replacement I’ll need to recover from but the complications of an RA flare up because I need to stop using Tocilizumab 10 days before and 2 weeks after the surgery, as long as there is no infection. Had knee replacement surgery in 2017 and 2018. Because of the RA it took me a long time to recover and the pain was extreme. It feels like a nightmare at the moment. It was in 2018 my GP put me on steroids to cope with the pain and I was told last year I must keep taking 5mg/day for ever. Having osteoporosis doesn’t help either… I just need a brand new body!
It was Plains who used the word gotten in the original post. You do need to check each reply to see who the author was directing it to. If there is nothing, it was the originator of the post, otherwise it says "in reply to ..." next their name
I could not follow it all. Many were responding to me, I guess but talking about other issues between other people. My e-mail in box was flooded. All in all everyone got answers or their comments heard. All good! Happy new year!
ESR/sed rate and CRP will be looking great if you are on Actemra - it is the way it works and cannot be used to monitor disease activity.
There are at least 3 mechanisms that create the inflammation in GCA, Actemra only works to combat one of them, the production of IL-6. Actemra only gets half of patients off pred altogether - the other half need pred to control the inflammation caused by the other 2 mechanisms. If you have that problem, you may need a bit more pred.
I had similar effects with my eyes for some time with Actemra, it started after a couple of months. I felt as if I had and eye infection and when my GP gave me antibiotic drops it cleared very quickly but returned a bit after stopping the drops. However, the doctor in the eye clinic at the hospital told me to use drops for dry eyes as they were very dry. I have had to use them 2x daily and consistently before I got a good result , it took a few weeks. And as Snazzy says - all drops are not created equal, some are definitely better than others. If you find the right ones, then thin drops WILL work but it is a matter of trial and error.
Exactly my pattern. I use Thealoz Duo eyedrops, they are good, but I had to argue for them, they are expensive. The cheaper ones that contained preservative were no good ( dry eye drops).
I used those too on several occasions. But finding putting warm water on makeup wipes does the job just as well. £9.99 a box is expensive for the wipes and the Hycosan drops too.
Plains, you probably have Blepharitis. I have it and find that my eyelids get very dry and sore sometimes. I'm supposed to use special wipes, but they're expensive. So I just wash my eyes with warm water instead and live with the discomfort.
Don't do what I do, but try different wipes and/or drops till you find one that suits you.
As you, I too have same symptoms with eyes after being on Actemra for several months.. I use heated eye mask for 10-15 minutes most days, wash eyelids with baby shampoo, use dry eye drops , which all help a bit. Last week I tried husband’s antibiotic drops, and the drops were magical! My eyes finally felt normal after almost a year of swollen lids, etc. after just one day-making an appt to see ophthalmologist to see if I can get prescription for when needed. Happy 2023!
I found that - but the doctor in the eye clinic was very unwilling to use antibiotic drops. It may have been coincidence - ordinary drops have worked too now.
interesting, will see what my ophthalmologist says. Have only used twice in one eye. Not something I want, but if gives me eye relief, then would love to use as needed.
Dry eyes are very common alongside many autoimmune disorders and really can imitate infections. If you have dry eyes you NEED artificial tears to keep the surface of the eye healthy.
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