Hello, all. Glaucoma diagnosed late 2019. Initially drops tolerated ok think Latanoprost plus other.After a while developed bad red eyes, itching. Tried various drops since including preservative free, had both cataracts done.
Tablets Azetazoloimide? Worked well, not able stay on them!
Stopped taking drops to prove symptoms go away and did.
While on Simbrinsa got really bad so had FML steroid drops which controlled quite well. Can't stay on them! but taking when needed.
Recently on Trusopt Dorzolimide and Tafluprost.
Now got the flaky eyelashes red eyes and eyelids. Seems sure signs of Demodex Blepharitis.
Research on web shows The Dry Eyes Clinic in Manchester, UK.
Comprehensive treatments.
Anybody used them? Have booked in for end January 2024.
Been trying various Dry Eyes drops and tea tree oil wipes/foams.
Opposed wipes seem to help with crusty skin in corner of eye and on upper lid.
Started Carmize (Calm eyes!!!) today and, yes, the eyes do seem calmer....Time will tell!
Also heard good reports of HOCL,, Hypochlorous Spray for eyelids.
Anyone tried?
Also, in July 2023, the FDA in the USA approved Xdemvy by Tarsus to specifically target the nasty, horrible Demodex mite which is on the skin and burrows in around the eyelashes and causes problems when dies off. Read up on it, very horrific looking 8-legged creatures.
We all have them but this is what happens when too many of them.
Let's hope the UK gets Xdemvy approved. Promises to be a game-changer. Will ask the Prof at The Dry Eyes Clinic in a few weeks.
Also ask about optical nerve regeneration to improve lost sight. Ther is a company called Savir in Magdeburg, Germany, which uses low power electrical impulses to stimulate the eyes and brain.
Good statistics, apparently.
All the very best yo everyone, sorry its long read but it's a long road we have to travel.
All thoughts most welcome.
Roger
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So sorry to read that you are having such an awful time with eyedrops and Blepharitis. Hopefully the appointment at the end of the month will be beneficial for you.
We are aware of the clinic in Germany. We have asked consultants for their feedback. They feel that more research and stats need to be available before they would consider recommending this treatment.
We have spoken to a few patients on the helpline who have considered this treatment, but after finding out the cost and knowing it would be an ongoing treatment, found it would be far too costly to continue and decided to stick to their NHS eye clinic.
I will be interested to see what the consultant at the Dry Eyes Clinic in Manchester says.
By the way, costs at this clinic don't seem too bad. I would encourage others to have a peep at their website. Helpful lady at the reception phone, too!
You seem to have tried many different things for your blepharitis and I hope you will eventually find something helpful.
I used to have Rosacea and was advised to take low dose Oxytetracycline but eventually developed drug induced lupus . Apparently Tetracyclines can also be a treatment for Demodex blepharitis.
As I have so many side effects with medicines I found various treatments on the internet. One of the best was dilute honey all over my face at night like using a night cream, a bit sticky but soon dries and this has really helped me. I believe the demodex mites may also cause the rosacea.
Perhaps a short course of antibiotics may help your sore eyes ??
The optic nerve regeneration sounds very interesting , maybe Glaucoma UK will have a webinar on research again.
I have exactly the same problem with drops. 10 years no problem, now cannot tolerate any. Was very patronised for a long time, saying it was difficult as I didn’t like using drops!! Eventually took it seriously and gave me acetazolomide. Game changer. They warned me of terrible side effects which have not happened and eventually decided I could keep taking them provided I have regular blood tests as they can deplete potassium and affect kidney function. All good so far and I am keeping my fingers crossed they keep prescribing them. It may be worth trying again to get them prescribed. Good luck!
Thanks a lot. Yeah, I was fine on the Acetazolomide tablets before. Think will push for them again.For dry eyes, Ivermectin tablets or gel (with Metronidazole) has had good reports. Also, Manuka honey gel?
Ultimately, as before, guess if stop taking the Glaucoma eye drops, then the Demodex Blepharitis will go away! That was heaven!
On list for a Trab......y as pressure a bit high in my worse off eye.
Anyone been to the Savir outfit in Madeburg fir their optical nerve regeneration electrical impulses? Not sure of the costs.
Just a thought, but if you have red flaky eyelids they are probably inflamed. It could be demodex but could also be something else.
I get great dry eye relief by using a cold eyebag. Instead of heating it in the microwave I keep it in the freezer. I find a warm compress tends to make things worse for me. Might be worth a try.
Blepharitis is just a "catch all" term used to describe a set of symptoms. Those symptoms could be caused by any number of things.
For me, my eyelids have become a weak point. It seems that if I have inflammation anywhere in my body (possibly from over exertion or sometimes just from eating the wrong foods), my eyelids are the first thing to let me know. Quite why this is I cannot say for certain.
Doublebase Gel 100mg tube can be purchased from chemist, inexpensive. It is isopropyl myristate 15% w/w liquid parafin 15w/w A highly mousturing and protective gel for use in the management of dry or chapped skin conditions.
The slightest smear on eyelids near lashes only do not get the gel in your eyes. Bleparclean wipes are great expensive but worth the price if unable to get a prescription for them.
In 2012 my eyelids were red sore/itchy with flaking white skin and white spots at the base of lashes. lashes were falling out and growing inwards scratching my corneas, I ask my consultant if I had bleparitis and cataract he did not reply.
I ask for a referal from him for a second opinion, the second consultant confirmed both, 3months of anti-biotics followed, after using eye drops cleaning lids with cooled boiled water then using the bleparclean wipes which can be torn in half followed by the slightest smear of double base gel control the bleparitis.
12years later I still follow the same regime each time I use eye drops at home. Later in 2012 a catarach operation followed by SLT control my eye pressures
be careful with the t-tree! I found out yrs bak I was allergic to it after using too strong on septic rose prick, made my eyelids and lips swell up after touching them with t tree. Just had a flare up of a stye like blepharitis, even tho regularly use ocusoft platinum foam to clean eyes am and pm to clean and gentle massage, with organic cotton eye wipes, more soothing than the ocusoft single wipes I find too abrasive. Seems better after a couple of days with also organic baby oil v lightly on upper lid after ocusoft dried. Think it was the v cold, wind and van heater when travelling set it off! Also I drops thro out day. Hoping it’s not the Monopost !
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