My intro: I'm a CLL type leukaemia patient (happily post treatment), and CLL is form of NHL (which I think can link to Sjogren's)
All I know at the moment is I get dry mouth (for years) and painful dry eyes at night, the eye problem started early last year. It comes and goes. Worst case I wake up with a stab in the eye without even opening (That is rare though).
The optician recently recommended Thealoz Duo UD (just what they kept some samples of I think) and gave me a few samples to try (so I'm learning how to put them in, but now need more supply.
At a GP appointment about another issue I very briefly showed them the Thealoz drops, which they were happy with.
Just now isn't a good time to get a GP appointment about this specific issue.
Can anyone recommend which drops to get in the meantime (I know advertising is not recommended so apologize for the above. Please PM me direct if you feel uncomfortable about reply to this post, and Admins please edit this post as you see fit.)
I'm not clear at the moment what the eye drops should contain, nor what the "UD" in the above means, so I mention the brand. They are single use ones, but I guess most people use bottles?
My preference at the moment in lockdown is to buy online from a reputable chemist.
Many thanks,
Ernest
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Ernest2
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I use hylo-forte eye drops which are preservative free with good success.
I have used use Hyloforte and dual to good effect plus Hylonight ointment every night. Good idea too to use a heated eye mask (purchase online) every morning and night too to prevent blepharitis. You need it hot enough to turn lard into oil my optician told me! 15 minutes a day. I posted here very recently about a great webinar with advice on self care from a UK Sjögren’s rheumatolgist - includes eye products. X
I am thinking whether I've got Sjogren's or not I should simply join the BSSA to get myself up to speed. Can I ask the cost of that please?
I've had a problem with dry eyes since early 2020 which I put down to trying Amitriptyline for a month (bad mistake from other side effects). Stupidly of me I didn't record exactly when dry/gummy/stuck eye started. Doesn't look like it's going to go away, and I can't yet predict the bad nights/awakenings.
Had the Pfizer mRNA jab yesterday. Eyes were gummed last night, but 4 trips to the loo (perhaps x3 is normal for me), so no particularly bad effect. I have learned to get to the loo now without opening the eyes. Nice and slow doing that, finger tipping door handles and stair rail acorns on the way. Fortunately I'm well away from the start of the stairs.
No problem Ernest2. I think BSSA membership is about £30 a year but you’ll have to phone their HQ and ask someone called Sara who administrates it now. Details on website.
Sjögren’s is usually so much more than dry eyes. It could easily be causing or have caused many of your problems as an underlying factor. I get very anxious now because none of my doctors seem to know that much about it or how bad can be. The most knowledgeable person seems to be a colorectal surgeon and my acting neurologist but he has been redeployed for Covid - same with my rheumatologist. The rest just say “ah yes that’s just dryness from your Sjögren’s” or Raynaud’s or small fibre neuropathy.
I have small fibre neuropathy around my whole body including my eyes. I’m told this is a bit of a disaster for eyes as I don’t have any of your symptoms to tell me they are dry these days. So I forget to use drops and can never work out why my balance is so off and why I get exhausted after reading anything or working now. My mouth has turned numb and I can’t taste much but have a horrible taste. It’s not a great disease I must say and very underrated. I also have systemic sclerosis but am told it hasn’t yet fully kicked in apart from my GI system and red spots on face and hands.
I’m on an immunesuppressant called Mycophenolate and have 3 monthly infusions for my circulatory disease, Covid climate permitting. Still waiting for my Covid jab - told that as a shielding person it should be mid Feb.
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