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Blepharitis update: SOME success(!!!!) & some advice needed

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girl32479
girl32479

So... Just to backtrack for you all: 

My first post after diagnosis was over 2 months ago. I'd had weeks of crusty eyes in the morning, new cysts all the time (maybe a cyst/stye every 2 days!), eyes occasionally sore or itchy but not very often and very very red eye lid margin.

My second post was 1 month ago: I had just been back to my GP who had given me oral antibiotics and told me to continue with lid scrubs, soaks etc. Told me I had no improvement. Didn't want to take antibiotics from a general doctor as I feel they dont know enough about the condition so I got referred to a private eye doctor.

** NOW *** 

SO.... my first visit to the eye specalist. He used a stain on my eyes and looked around a lot to assess my condition. he told me...

1: my upper oil glands are damaged by overuse of 2-weekly contacts. He said dailies are much better. This would make my eyes slightly dry.

2: my lower oil glands were not producing oil due to MGD from posterior bleph, making my eyes even more dry

3: my lids were so red and inflamed due to allergic conjuctivitis (as a result of bleph).

He told me not to take the oral antibiotics the doc prescribed. He told me no lenses (but that the eventual lens prognosis is good)

He told me: Vexol (steroid drop) 2x daily. 

                   Opatanol (allergy drop) 2x daily

                   Hylo-forte (lubricating drop) 2x daily

                   Flax seed MGD heated bag (on amazon) + massage 2x daily

                   To take flax seed capsules 2x daily

                   Blephaclean lid wipes 2x daily. 

(NB: flax seed capsules were too big and couldnt find any smaller ones so took omega-3 instead which he said is good too. Smaller sizes more concentrated available on amazon)

He told me to come back in 4 weeks.

I followed his advice religiously (except I wore contact lenses twice- once for around 12 hours and once for 5 hours). 

For anyone interested: I wore some eye make up too. I used Rimell liquid eyeliner maybe 50% of the days, not right on my eye lid but at the edge of my eye (as a flick). I wore Rimell mascara on the ends of my lashes maybe 3 times and Rimell eyeliner on the waterline once. 

SO.... 

4 weeks on was yesterday and I went back!

He looked at my eyes and told me the lid irritation is virtually gone e.g. the allergic conjunctivitis part is gone!!!!!! He said it may flare again with the summer pollen count, but I don't feel that pollen has any effect on me (maybe im wrong).

He therefore said stop using Vexol drops.

However, he said a lot of my glands are still blocked. I have been using hot compress followed by lid massage with q-tip/cottonbud every single day twice. I don't see any oil coming out though. Should I press harder? Does anyone have any extra advice on how to unblock these glands? :-( There are still several lumps around my right eye under the skin which I can feel (one is so big it's visible).

(PLEASE dont suggest I use pliers or anything or needles to remove the oil. I'm not risking my sight. Safe measures only please!)

So I'm off Vexol but still hot compress and massage x2, blephaclean x2, opatanol x2 and hylo forte x2. 

So yeah. sorry this post is so long but I know us blepharitis sufferers always want to hear eachothers experiences and what works and what doesnt. So it seems that the Vexol worked at curing the inflammation. Doc said my eyelids had a 'cobblestone effect' i.e. were bumpy before and now they do not. Super happy about this. Just REALLY want to get rid of these blocked glands!!! Going on holiday for 5 days this weekend so will probably be wearing lenses etc a bit more . Hope it doesnt ruin my progress.

Hope you guys can maybe give me some extra advice and hope that my experience helps someone a bit. xx

0 likes, 26 replies

26 Replies

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  • andy22.aj
    andy22.aj girl32479

    Posted

    You need to have aggressive treatment to unblock the glands.. hot compressers only work once there unblocked to keep them open, you say you don't want to try any aggressive treatment but that's the only thing Thats work for me.. I use the forceps on my self.. but you can go to a professional to have your glands expressed.. if you leave your glands blocked for too long they will just die out from not working and you can't regain them.treatment on your eyelids is not gonna threaten your sight. Also doxycycline had also helped to get my oils thinner and easier to flow
    • girl32479
      girl32479 andy22.aj

      Posted

      I do agree that this makes sense, as hot compresses seem more like prevention rather than cure. I think that the blockages I have are too big to be released this way - I have been using a hot compress for almost 3 months and they are still there. I am obviously keen to prevent any glands from "dying" as this will obviously affect my eyes forever.

      HOWEVER, the doctor I am seeing is a specialist Blepharitis doctor at a private hospital. If manual aggressive expression was really the right answer, would he not have suggested it by now?

      Emis Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • andy22.aj
      andy22.aj girl32479

      Posted

      Hi.. what makes you think your doctor's a blephartis specialist? Because no eye specialist are actually trained in blephartis. Ive been to probably 10 private hospitals in and around London, I thought I would get better care if I was paying for it but it's just the same as nhs as in the knowledge they have.. if he's only telling u hot compressers and there not working. Its maybe time to change your approach. Are you in England or the US?
    • lee12629
      lee12629 andy22.aj

      Posted

      Mine opened with just the very warm not hot compresses. I also did very light lid expresseion.
    • lee12629
      lee12629 andy22.aj

      Posted

      Please be careful. You can damage the glands if overly agressive.
    • lee12629
      lee12629 girl32479

      Posted

      You can ask your doctor to express your glands to get the process started
    • lee12629
      lee12629

      Posted

      Im going to try doxcyciline soon to help with irritation and it is supposed to thin the secretions.
    • david24522
      david24522 andy22.aj

      Posted

      I'm in the UK and my doctor said that he'd be very interested in any feedback that i had with my blepth "treatments " as he only had the NHS website to fall back upon . Obviously I've told him of this site and what I've managed to try for my posterior blepth .
    • emma29788
      emma29788 david24522

      Posted

      I'm uk based too! I much prefer baby shampoo and tea tree than all these medicines and things people try. So far my far best treatment is this smile
    • lee12629
      lee12629 emma29788

      Posted

      My eyes get slight irritation and kind of dry from the baby shampoo any sudgestions,
    • dena64643
      dena64643 emma29788

      Posted

      The durg companies want you to pay 42$ for a scrub that has tea tree oil in it. I don't have that kind of money. Dena
    • dena64643
      dena64643 david24522

      Posted

      It's awful that we have'ft to be our own doctors, but don't have a choice. Dena
  • emma29788
    emma29788 girl32479

    Posted

    Your eye doctor has helped you so far! I would suggest asking him..

    Every bleph sufferer is different, everyone's symptoms are different and so every way we ease our symptoms varies and may not work for everyone but he seems to have found what helps you..

    I use antihistamines when needed,

    Along with baby shampoo, tea tree oil and water to clean my eyelids twice daily with a cotton bud. Some people find wet ones work, some people conpresses..

    I am a contact lense wearer and I will not wear glasses lol, so I have found my solution that keeps it all at bay so I can wear them and more recently have begun occasionally wearing mascara again.

    One advice I will give, is to buy a more natural mascara. I bought one with lots of natural ingredients and it doesn't irritate my eyes, I found anything from Rommel to Mac are full of chemicals and god knows what and I wouldn't want all that stuff near my already sensitive eyes.

    I hope you find your solution and can wear contacts again smile

    • girl32479
      girl32479 emma29788

      Posted

      Maybe I will call him and ask. It's just in the last appointment I kinda mentioned that they hadn't disappeared yet (and he knows they havent) and he kinda said just keep at it.

      Your reply has filled me with confidence and positivity thank you!!! I said I would never wear my glasses out to university or nights out etc, but I've ended up with no choice. I dont know why but it just lowers my self confidence SOOOO much, I just feel so crap in my glasses. 

      Thank you for the advice regarding make up!

      Would you mind explaining to me your bleph story/diagnosis/symptoms/when you first got it etc? x

    • dena64643
      dena64643 emma29788

      Posted

      emma, I use 1 drop of tea tree oil, 1 squirt of no tears baby shampoo, twice a day. I just wash my face with it and rinse with cool water. Eye drops with no presertive if eyes are irritated. Works good. smile
    • lee12629
      lee12629 girl32479

      Posted

      Here in the states glasses have become quite fashionable like an accessory. Dont feel bad one bit about wearing them.
    • emma29788
      emma29788 dena64643

      Posted

      Glad to hear! I've been doing this for about a month but with cotton bud around my eyelid margin and it's so good. Having a bad day today.. Could be my allergies though.. But even still these bad days are much better than before smile
    • emma29788
      emma29788 girl32479

      Posted

      I've had it for years! Apart from the obvious reasons like itching gunk and sore red eyes I hate it for glasses. I used to hate wearing glasses as a kid and I really don't want to ever HAVE to wear them again.

      At first it was more like swollen glands that led to movement of my contacts so I couldn't see clearly. Then mucus and itching and swelling and a bit of everything turned up.. Contacts where a no go and I was devastated.

      I have eye fishing syndrome with dry eye and bleph. Not fun as it leads to itching sore red eyes and stringy mucus that I hate!

      Doctors are not help to me so far, they just gave me conjunctivitis drops and they did nothing. I have since tried anti histamines which helped, but take a while (days) to kick in so I have been searching for a quick fix.

      I was doing hot conpresses and baby shampoo, I've tried wet ones as seen on here, and now I'm on tea tree which is by far the best. I have no major flare ups that cause my contact lenses to move and a bad day is just a gunky day with minor itching and clears up in a day or to with regular cleaning and no contact movement so I can see smile

      I haven't worn mascara for about 2 years.

      Since tea tree, I got individual lashes and now they are off I am on all natural mascara, I don't wear it everyday as I don't want to make anything flare up but so far so good.

      I also change my contacts (monthly ones) every week, so pair 1 I will wear week 1,3,5,7 and pair 2 I will wear week 2,4,6,8 if that makes sense. So each pair gets worn for one week then has a good old soak in the pot for a week before being used again which is also helping as my contacts can go slightly cloudy on a bad day.

      It has been a struggle, and so little is known it does feel like a self diagnosed/medicated condition but groups like this help so much to know others are out there and with new treatments and advice all the time. I really hope you find your treatment! Just be persistent even on good days!!!

    • dena64643
      dena64643 emma29788

      Posted

      I would be lost without all the information that the people on this site provide. Thank you. smile Dena

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