eye issues

[Plains]

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!

[piglette]

Blurry eyes can be a side effect of pred. Have you seen an optician recently?

[Plains in reply to piglette]

yes, I have three weeks ago.

[piglette in reply to Plains]

At least you can discount cataracts etc in that case.

[SheffieldJane]

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.

[Plains in reply to SheffieldJane]

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!

[Hidden]

Try using wipes regularly over each eyelids and bottom lids too. Be thorough. I’ve been doing this regularly, it helps. Good luck

[JGBH in reply to Hidden]

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.

[Hidden in reply to JGBH]

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)

[JGBH in reply to Hidden]

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.

[Hidden in reply to JGBH]

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' ?

I do hope you can get sorted soon X

[nallufl24 in reply to Hidden]

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

[Hidden in reply to nallufl24]

Okay, I never thought there was any such word in the English language. You either have 'got' it, or you haven't haha

[PMRpro Ambassador in reply to Hidden]

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

grammarly.com/blog/got-gotten/

[Hidden in reply to PMRpro]

Interesting

[PMRpro Ambassador in reply to Hidden]

Language is

[MiniSpec in reply to PMRpro]

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.

[JuneWalker in reply to MiniSpec]

In Canada we use the U in labour, neighbour, colour, etc. Interesting to hear about the history behind the U. Thanks for the info.

[PMRpro Ambassador in reply to Hidden]

Arava is what we refer to as leflunomide and is sometimes used as a steroid sparer in PMR.

[Hidden in reply to PMRpro]

Didn't know that. She takes it in tablet form and never has any pain from her RA....she lives in Spain, so has to pay for it.

[PMRpro Ambassador in reply to Hidden]

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

[Hidden in reply to PMRpro]

They prescribe leflunomide when they’re out of stock if arava. And yes she does have insurance

[PMRpro Ambassador in reply to Hidden]

So she doesn't pay ... Arava is the brand name, leflunomide is the name of the substance, the generic, but it is the same stuff

[Hidden in reply to PMRpro]

Do you speak fluent Italian ?

[PMRpro Ambassador in reply to Hidden]

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.

[Hidden in reply to PMRpro]

Do you speak any other too

[PMRpro Ambassador in reply to Hidden]

Some Italian and remnants of French - in both cases I understand far better than I speak them.

[JGBH in reply to Hidden]

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!

Pleased your tapering is working well.

[PMRpro Ambassador in reply to Hidden]

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

[Hidden in reply to PMRpro]

Yes, just seen it

[Plains in reply to PMRpro]

it “is” a word used in the US. I don’t know who was questioning it? Lol

[PMRpro Ambassador in reply to Plains]

Staplehurst ... It started a fun discussion - as far as I'm concerned at least

[Plains in reply to PMRpro]

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!

[PMRpro Ambassador in reply to Plains]

I suppose I'm used to it but even I struggle to follow the logic or otherwise of some conversations! HU has a very strange nesting policy!!!!

[Hidden in reply to Plains]

Sorry Plains, it was me.

.

[Plains in reply to Hidden]

no worries.. 😃

[Hidden in reply to Plains]

Thanks

[SnazzyD]

watery drops weren’t enough for me, I had to have thick goopy ones at night as well

[prunus]

What does your optometrist have to say? He is the eye expert? I would want to be seeing mine in your shoes.

[PMRpro Ambassador]

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.

[Plains in reply to PMRpro]

thank you

[SheffieldJane in reply to PMRpro]

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).

[Koalajane]

I use Hycosan extra drops.

For blepharitis Eye Doctor Eyelid wipes are good as are the heated mask that you heat in the microwave

[Hidden in reply to Koalajane]

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.

[Koalajane in reply to Hidden]

my husband uses warm water in makeup pads. I like the hycosan as it is so easy to use

[Hidden in reply to Koalajane]

I've paid £12 for the drops in Boots....they don't seem to last that long

[Koalajane]

I find they last long enough as it measures the drops easier and if I use others I waste a lot down my face!

[MiniSpec]

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.

[PMRpro Ambassador in reply to MiniSpec]

Using a small amount of a mild soap in cooled boiled water is approved by eye clinics and far cheaper than special stuff!

nei.nih.gov/learn-about-eye...

moorfields.nhs.uk/sites/def...

aoa.org/healthy-eyes/eye-an...

[Plains in reply to PMRpro]

thank you very much! I will try it as I have tried several drops

[Plains in reply to MiniSpec]

thank you! I have used warm water, which has helped.

[Elephants2019]

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!

[PMRpro Ambassador in reply to Elephants2019]

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.

[Elephants2019 in reply to PMRpro]

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.

[PMRpro Ambassador in reply to Elephants2019]

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.

[Plains in reply to Elephants2019]

thank you. I have a call into mine and will suggest we try it since nothing else sees to be working.

[Elephants2019 in reply to Plains]

will be interesting to “hear” what you doctor recommends!