Diagnosis received!

[JEM23]

Hello all, I have Lupus and some time ago I asked for help regarding my sore eyes, well thanks to my observant endocrinologist I saw an eye specialist yesterday and low and behold I have Blepharitis which seems, according to this site, to be linked to Lupus. I have been prescribed blephasol, maxi troll and to use an eye bag. I am so pleased that someone somewhere is interested to help me with this instead of fobbing me off with "you have dry eyes, so use your halo tears"

Note to self, stop getting fobbed off by the medical profession - we all have a right to have our symptoms treated, and as much as I don't want to be ill, neither do I want my symptoms ignored!

Rant over lol.

Jane

[MargaretGail]

It's taken me ages to get Blepharitis under control, it's so painful!

[misty14]

Hi Jen

Great to hear you've got diagnosis and treatment for your eyes. Hope it soon improves. X

[JEM23 in reply to misty14]

Thank you and fingers crossed x

[EOLHPC]

congratulations: well done!

it's always great to read posts about success with good medics

several years ago, thanks to a brilliant immune dysfunction expert nhs eye consultant, i got my version of immune dysfunction related chronic blepharitis (+ other typical dry eye issues) reasonably under control within the first year on his combined therapy treatments (v similar to yours)....so, am hoping you'll see improvements vvv soon

i also hope the eye clinic is monitoring you on a regular basis...say, every year at least

🍀🍀🍀🍀 coco

[JEM23 in reply to EOLHPC]

Thanks Coco, back to the Consultant in 3 weeks then let's see where we go from there. Once again thank you for your original, and this reply. This forum is absolutely crucial as it gives people who are working in the dark some light at the end of the tunnel - by sharing experience (and expertise) it can help shortcut the process of being passed from pillar to post. I realise now how most GP's will never be able to help us as their knowledge, and interest, is frankly non existent. Thank you! Jane X

[EOLHPC in reply to JEM23]

This is your success...am so relieved for you...if I've helped at all I'm so glad

Sad but true...GP experience varies too widely for us to sensibly rely on them per se...some of us are lucky to hook up with gps that can understand, support & actively participate in our multisystem diagnoses, treatments and monitoring...but there are too many of us running into the most lazy neglectful response from Gp's....my feeling: the system doesn't seem to encourage active effective partnership between patients, GPs & hospital medics & carers. today complex patients like us, of all ages, are on the increase...gp surgeries will eventually have to get their act together re their complex patients...otherwise this is going to get ultra mega messy. My fears & hopes for our future are fairly evenly balanced at the mo... but the road ahead doesn't look easy for any of us: patients, carers, medics....🤔 🍀🍀🍀🍀

[creaky]

Good news! I hope that your eye problems improve.

I am waiting to see an eye specialist about my sore dry eyes. I've waited so long that they have improved a bit by themselves.

My advice is to challenge anyone who tries to fob you off because you have lupus, I have learnt to now, but it took me a while to get started.☺