Sjrogens or just RA: Hiya ....for the last couple of... - NRAS

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Sjrogens or just RA

claireyj profile image
13 Replies

Hiya ....for the last couple of months I've had puffy eye lids :( changed make up , removers etc but still bad. Just ignored it to be honest until people started asking if I'd been crying coz that's wot it looks like puffy. I've laid off makeup which as been off work anyway as bad flare but now eyes really itchy, dry etc. I bought some drops from the chemist I use when kids got conjunctivitis but not helped .. Could this be RA and just pass , like jaw ache to does or is it sjogrens? Been on google and panicking as sjogrens sounds awful , I don't have dry mouth issues though (yet) ...please help don't think I can take anything else being wrong with me feel so fed up with it all, just started Methx jabs and hoping for improvement now this..Blimey they warn it's a rough ride not kidding are they :(( Claire ..

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Dotty7 profile image
Dotty7

Claire, I think you need to go and see your GP or an opthalmologist, or possibly both. You've tried all the possible self-help things, so now it's time for an expert opinion/diagnosis. Try and get an appointment on Tuesday if you can, because eye things ought to be seen to quickly, whether it's something serious or something minor.

How are you getting on with your injections, and are they helping your joints yet?

Dotty xx

claireyj profile image
claireyj

Hi Dotty thanks for your reply I will go , have to say no improvement with RA pain yet with the injections :( actually just did my 3rd jab by myself no nurse etc - it was fine . Am hoping after a few more weeks things will change and I won't feel so drained etc . I have too much to do Dotty havnt got time for RA and my eyes are worrying me so puffy look like Ive done 10 rounds with a boxer! . Hope you are ok xx

Dotty7 profile image
Dotty7 in reply toclaireyj

Well done on doing the injections :-)

I'm OK, just weary as always, and desperate for Spring to come - I saved a little stash of my mega Vit D capsules and I'm taking those rather than the lower dose fizzy ones, just to try and stave of some of the deficiency in the absence of sunlight. Hopefully I am in the finishing stages of completing my pension application: my bit is done, the school's bit is done, just waiting for the rheumatology nurse to do her bit and get the consultant to sign it, then it can go off. Fingers massively crossed that the medical officer accepts it, because there's no way I can cope with teaching any more, I'm too foggy and tired.

Fingers crossed that the mtx works quickly now - how long were you on the tablets before the injections?

Dotty x

claireyj profile image
claireyj in reply toDotty7

Dotty I was on the tabs for 4 months but I have a Hiatus hernia and it was aggravated when dose increased to 20mg so switched to injections, yes fingers crossed I will tolerate it . Good luck with your pension application, I'm an LSA in Key Stage 2 so I'm fully aware of all the work teachers have to do ie paperwork etc its crazy! Just had a walk along the seafront here in Southend on Sea it was chilly but YES I did see the sun and it felt lovely on our faces ..we want some more !! Xx

Claire I've got dry eyes and an incredibly dry mouth and as you may or may not know am now off the meds for a month to try and get to the bottom of this plus nausea and blisters in and around nose. I'm 2 weeks into this and have found that dry eyes and mouth are still the order of the day - tested negative for primary Sjogrens (ANA( so guessing it's secondary for me - which is far tamer than primary and is more likely with RA.

RA can affect your eyes as well as other parts so it may well just move on once the disease is better controlled. If you want good eye drops see your GP and get Lumecare preservative free ones. It sounds a bit like blepharitis - which I don't have with mine yet fortunately. My optician gave me a leaflet about this and explained best thing is to make up a solution with 1 drop of baby shampoo to 10 drops of boiled water. then put hot wet flannels on your eyes for five minutes as therapy and to loosen all the flaky skin and tear ducts. Then use a clean finger to massage your eyelids on rim where tear ducts art with shampoo and water solution - trying to push all gunk out of the eye (bottom ridge where eyeliner goes) and this should help and work as therapy too. I've tried it twice (been too busy and also used kitchen roll instead of flannels as too much to find clean ones all the time!

It does seem to work a bit.

You should get this checked out with your GP and get some of the preservative free eye drops too. At least it's not your mouth. It does feel like we are being ganged up on by our immune systems rather badly sometimes doesn't it? I have so far got autoimmune hypothyroidism (that came first), Raynauds (not badly but still a pain) and now Sjogrens it seems - oh and horrible osteoarthritis in fingers which are turning nobblier by the day. It's like being in a nasty Kafka play sometimes isn't it but in my case, and hopefully in yours too, all these add ons are relatively mild so just think of all as RA and hopefully all will be well controlled soon. Early days for injectable MTX but maybe you will need to add in a biologic sometime soon if you qualify - they seem to turn things round completely for quite a few people so don't despair please. Tilda xx

claireyj profile image
claireyj in reply to

Thank you Tilda for replying and with so much info :)) it really helps and yes I think a Visit to the doctors is a defo for drops but have taken everything else on board and will keep you all updated ...Goodluck with the drug free test lets hope it works for you and hopefully the dry mouth etc will too x

allanah profile image
allanah

Just to add on to (ildas advice, blepharitis can also occassionally need antibiotic help too, so get a check up as she says. Its frustrating though isn't it to be landed with RA and tthen all these other annoying little things comeas well!! But hopefully when your injections get into your system u will feel better , ahng on in there.

By the way dd u have. Steroids initially? They made my eyes puffy but settled down after a few weeks. Have a great Easter.

claireyj profile image
claireyj in reply toallanah

Hi Allanah thankyou for your advice. From Sept to Christmas time I had 3 lots of steroid injections and thought I was in remission almost but the steroids were just masking it really I think :( ...so New year had no steroid jabs and seemed to all go downhill but did wonder if the steroids may have effected my eyes as are puffy but like I said not had one since Dec ?! C x

allanah profile image
allanah in reply toclaireyj

Don't know if its an official thing but a lot of us got puffy eyelids and I get puffy swollen cheeks after steroids . I also have sjorgrens disease which causes dry eyes , mouth and other areas fo the body that should be moist! Steroids are amazing but shame they have too many side effects to let us stay on them! By the way my optician is better than my gp at eye care. They can tell u what's wrong but then can onlysend a letter to ur gp, but then my gp always prescribes what they suggest!! But hope u get to the bottom of it soon xxxx

nellysgran profile image
nellysgran

Hi Claire I also have sticky and dry, puffy eyes and when I spoke to my Rheumy about it she said it is all to do with RA, I went to boots and got eye drops which seem to help.

The MTX injections aren't helping me any better either yet, so we will just have to hang in there and wait for better results........I hate this disease !!

Happy Easter, Wendy xxx

claireyj profile image
claireyj in reply tonellysgran

Hi Wendy yep lets hope the injections start working soon :) I think I'm a week ahead of you so will be interesting to see how we both get on ...almost glad to hear that the dry puffy eyes may just be RA as don't fancy sjogrens at all and I really feel sorry for the people that have to put up with it ..C x

allanah profile image
allanah in reply toclaireyj

Have u tried putting bowls of water on the radiator tops or plants iin ur room to mositurise the air. My hubby has to do that at work as his office is dry and lots of staring at computers doesn't help?

claireyj profile image
claireyj

I think I'll try that Allanah ...I'm typing on my IPad now and it is making it worse as I'm staring at a screen ..have just googled and seems that dry eyes etc are quite common with RA and not always sjogrens ...I'll let you know how I get on with doctor ..have a lovely day xx

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