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Chronic Thygeson's Keratitis

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ecg123
ecg123

Any cure that works for Thygeson´s superficial punctate keratitis?? My partner suffers recurrent episodes and the steroid eye drops just don't have an impact anymore. Is there a way of preventing episodes?? He also has some chronic  digestive issues (severe constipation, doesn't pass stools for weeks at a time, painful bloating). I wonder if it is linked? I read that the keratitis could be linked to a gluten allergy, is this a potential underlying issue? HELP!!!

0 likes, 15 replies

15 Replies

  • Light
    Light ecg123

    Posted

    I had inflammatory filamental keratitis for two years. I don't know what connection it has to your sort, but there were no other symptoms such as constipation linked as far as I was aware.  I never heard of K being linked to a gluten allergy, but maybe I am out of touch.

    Although I do have, and have had for years, several auto-immune conditions.

    Your comment about steroid eye drops alarmed me slightly. My understanding is that steroid eye drops must only be used for a few days at a time and then stopped because of long term damage they can do. At least that was always my understanding. I could be wrong.

    Did your eye doctor not say anything to you about that?

    What exactly are the symptoms of TSPK?

    • ecg123
      ecg123 Light

      Posted

      Hi,

      My partner has has TSPK for over ten years now. He uses the eye drops (only after an eye pressure test has confirmed safe to do so) and he has been being seen by specialists at Moorfields in London. The reason I query the link with Gluten is because my partner has had both the TSPK and the digestive issues for roughly the same time frame, so I googled it and found a few comments and studies on the two diseases being linked. It appears that many people (similar to yourself) suffer auto immune diseases with TSPK, and coleiac disease (gluten related) is one of them. We are now going to try a gluten free diet and see what impact it has!! :-/ prevention has to be better than these damn eyedrops!!!

    • ecg123
      ecg123 Light

      Posted

      And the symptoms are very typical, starts with the itchy scratchy feeling in the eyes and then goes in to the difficult to see phase with white dots all over the vision. Lasts between 4-6 weeks at a time. Very stressful for him
    • Light
      Light ecg123

      Posted

      Fascinating!

      My Keratitis, started about three or four years ago, went through all kinds if phases and flares and potential treatments but was touched by none of them. It spontaneously vanished about nine months ago.

      Actually it hasn't vanished, it has become much modified and manageable now due to good advice from a Moorfields doctor.

      I haven't noticed any relation to my gluten-eating habits, which are unchanged.

      Let us know how you get on!

    • Light
      Light ecg123

      Posted

      OK. Got your post about symptoms after I'd sent my other one.

      My symptoms are very similar. Super itchy iritation like sawdust in the eyes. White spots on the cornea, serious discomfort.

      Now I have five different drops/gels and use them as often as I wish and vary them. It's not ideal, but it has taken the stress out of my life considerably.

      These days it has concentrated on one eye and I use the drops/gels to keep it from getting to the actual filamental stage, where you can see the dots on the cornea and I can't do any concentrted work.

      So rather than holding out till it becomes unbearbale, as I did before, I make liberal use of the drops and am a whole lot happier!

      Very dry air conditioned environments, like planes, are anathema to them poor eyes. I keep them shut the whole time and put vaseline in my nostrils. Yes, sounds weird but works: vaseline in my nostrils.

      Made a whole world of difference!

    • yeay
      yeay ecg123

      Posted

      Hi ecg123,

      I am excited to hear if going gluten free had any impact on the TSPK, seeing your post is 10 months ago now. I've been advised that such approach should last a minimum of 6 months to have any conclusive effect, if so. I am excited to hear of any results and hoping you are still around here on the forum. PS. May I ask if your partner has had any known allergies prior to his TSPK, like pollen or other foods? Thanks!

  • Marina_Dee
    Marina_Dee ecg123

    Posted

    I have TSPK ...inherited form my Mothers side of the family.     Took ages for a proper diagnosis but when I saw a corneal specialist instead of just an Ophthalmic surgeon it was confirmed immediately.     I dont have a gluten problem but I am Lactose intolerant and this causes the same probs as your partners.

    The only time I was given Steroid eye drops was when on holiday in Egypt and my consultant in UK told me in no uncertain terms that I was NOT to use them unless under medical supervision and then only for a very short while. Steroid drops will eventually thin out the cornea,causing more problems.

    I also have glaucoma for which I have to use eye drops.

    Took a long time of trial and error to find a good preventative regime for my TSPK but now use Simple eye ointment EVERY night without fail,and Carmize 1% eye drops during the day if I feel a problem coming on.   I always wear close fitting polarised [dont confuse polarised with Polaroid which is a brand name..not all Polaroid glasses are polarised] glasses when out and about,which have helped tremendously. TSPK often has photosensitivity as one of its symptoms.

    Treatment has to be every day and for the rest of his life,as it or it may worsen as he gets older.

    • Light
      Light Marina_Dee

      Posted

      Are those Simple eye ointments available at chemists other than Boots?
    • Marina_Dee
      Marina_Dee Light

      Posted

      Yes, The Boots brand is identical to the Simple brand and made by the same people. Simple eye ointment was unavailable for the whole of last year due to licensing problems but is now back again,although not all chemists seem to have restocked,so you may have to shop around. Strangely,the Boots brand is a little cheaper so if you dont get free prescriptions and you can get to Boots [or buy online] thats the cheaper option.      

      This is a condition that is not always recognised easily and quickly,so as I mentioned you can go through hell before you get the right treatment for you. I also have a tiny corneal ulcer as a result of not being diagnosed properly and the eye ointment is the only thing that keeps it from getting infected.

      I'm interested in how your partner gets on....keep in touch.

    • Light
      Light Marina_Dee

      Posted

      Marina, Thanks.

      Just to get it absolutely clear (because I'm asking someone to buy it for me in the UK, as I'm away right now)... Is that "Boots eye ointment"? or "Boots hypoallergenic eye ointment"? or "Boots something else eye ointment"?

      I've never bought Boots own before, but am hoping to get VitA-Pos but would like to try the Boots one as well if, as you say, it's identical to the Simple.

      I was using Lacrilube but that doesn't work for me, so for me it's important that it's without preservatives, as I'm guessing Simple is  – because my memory is that Simple products don't have anything extra added. Does this fit with your understanding?

      Do you know if the Boots one has preservatives?

      Appreciate your input on this...

    • Marina_Dee
      Marina_Dee Light

      Posted

      Its Boots Lubricating eye ointment, in a green and grey box with the tube inside.    No preservatives.      I used Lacrilube but found it too 'sticky' and it didnt clear from my eyes very quickly so everything was a blur. Ended up with headaches and frustration trying to blink it away.  Good luck.
    • Light
      Light Marina_Dee

      Posted

      Thank you so much...

      As for Lacilube, I think it's designed to be used at night because of those sticky-blurry-messy features you talk about.

      Cheers!

  • jkpm18
    jkpm18 ecg123

    Posted

    Here are the steps I take to prevent reoccurrence of my Thygeson's SPK symptoms: 

    (1) Completely remove caffeine from my diet.

    (2) Always get enough sleep.

    (3) Use over-the-counter lubricating eye drops at the first hint of my eyes feeling even the slightest bit abnormal.  

    I haven't had a flare-up since adopting this protocol.  I hope it works for others.  Keratitis pain can be excruciating, and I am very thankful to have figured out these rules to live by.

    • Merebear
      Merebear jkpm18

      Posted

      That's very good advice. May I ask what other dietary rules you follow? Thank you!

    • jkpm18
      jkpm18 Merebear

      Posted

      I don't have any other dietary rules. I have always stayed away from processed foods, and I try to eat natural, whole foods as opposed to things out of a package. I also workout 4 or 5 days a week. But I've been doing exercising and eating right for years, both during times of flare-ups and times of peace. So for me the only factors I rely on to keep my Thygesons at bay are my 3 Rules: (1) No caffeine, (2) Full nights of sleep, and (3) TheraTears dry eye therapy drops.

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