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LipiFlow Treatment

Posted , 7 users are following.

nancy03023
nancy03023

My doctor recommended LipiFlow Treatment for my severe eye dryness due to Sjogren's Syndrome. This treatment cost $500.00 per eye. No insurance will cover this treatment. It's been almost two weeks since the LipiFlow treatment, and my eyes feel dryer than before this treatment. Has anyone ever had this treatment?

0 likes, 14 replies

14 Replies

  • lily65668
    lily65668 nancy03023

    Posted

    Hi Nancy,

    I'm interested to hear about this, because my problem is also complete absence of oil production from the Meibomian glands in one eye, and I understand this is what the LipiFlow system targets.

    I've just looked it up, having never heard of it before, and I see that the manufacturers say that first results can be expected in 6-8 weeks. If you had it done less than 2 weeks ago, it might be a bit early yet to start seeing results. Also, any interference with the glands inside your eyelids causes pain for several weeks. At my last ophthalmologist appointment she spent a long time attempting to forcibly squeeze out oil from the glands (without success) and my eyes felt terrible for about a month afterwards.

    At the moment, she has me using one of those eye masks you heat in the microwave and apply yourself. It was extremely uncomfortable at first, but I found out by testing the mask without heating it that this was due to the weight of the mask on my eyes rather than the heat. (It's one of those things with little plastic beads inside it, which makes it quite heavy.) I have to say that after a few weeks of daily use, my eye is now becoming slightly more comfortable and the treatment is less painful, so I'm hoping this might work and I won't have to go on to anything more complex.

    I will, however, watch this space to see how you get on over the coming weeks. Do let us know, won't you? My next appointment is in 8 weeks' time, so it would be good to have some feedback by then. The doctor did mention at our last appointment that there are other things she can try, so maybe LipiFlow is one of them.

    I've no idea whether or not my country's State medical insurance scheme would cover this treatment, or even if it's available over here. On the bright side, only my left eye is severely affected so I could maybe afford it on a private basis for that one eye if it came to a similar price - and if I heard of a success story with it.

    • nancy03023
      nancy03023 lily65668

      Posted

      Hi Lilly,

      Thanks for your reply. I have had SS for 10 years. It had been fairly under control until recently with the use of Serum Tears and Lotemax. Now I have burning, itching, and a gritty dry feeling in both eyes so my Opthamologist suggested trying LipiFlow. This is fairly new treatment and the machines are hard to find. Insurance doesn't cover and I was charged $500 per eye.

      I hope I see results in the near future since it has been hard to read or work lately.

  • lissa02504
    lissa02504 nancy03023

    Posted

    Hi Nancy I was recently diagnose with Sjorgrens one doctor told me she think it is and  the other said it might not.be . I had a biospy of the saliva gland and it showed inflammation  in the gland My eyes are dry and my mouth as well  and I am having sinus issues ooh yeah I'm in full menopause  . Are you taking medication? Does it help? Any info will help 

    • nancy03023
      nancy03023 lissa02504

      Posted

      Did you have a Schirmer test done on your eyes. This test told physicians that I had Sjogren's Syndrome.

      I take Evoxac that helps produce saliva for the miuth, Autologous blood serum for the eyes, and Lotemax for the eyes.

    • lily65668
      lily65668 nancy03023

      Posted

      Sorry for hijacking this exchange Nancy, but a positive Schirmer isn't always taken as proof of Sjogren's. It can depend on which country you live in, and even which ophthalmologist you see.

      Four months ago I was seen by the head of the ophthalmology department in a major Belgian hospital. He did the Schirmer, which showed zero tears in both eyes, and confirmed my existing diagnosis of Sjogren's as a result.

      Three months later I saw another member of his team, in the same hospital - this time an ophthalmologist specialised in eye surface conditions. She repeated the Schirmer (and actually found minimal tears in both eyes) but said this test could never be used to produce a firm diagnosis of Sjogren's.

      She ordered extensive blood work (the results of which I still haven't received) and said that even if these come back positive for Sjogren's I'll still have to have a lip biopsy in order to get a definitive diagnosis.

      I'm afraid you'll find similar stories all over these boards. There really is no agreement among ophthalmologists, rheumatologists or other specialists as to what constitutes positive proof of Sjogren's. Some insist on a positive lip biopsy, some a zero-degree Schirmer, others will accept blood inflammation markers, while some posters even report that they were diagnosed on signs and symptoms alone.

      Part of the problem with Sjogren's is that it's such a slippery, devious disease, apparently with as many diagnostic criteria and treatments as there are doctors!

    • lissa02504
      lissa02504 lily65668

      Posted

      Thanks for the information you provided when they did the lip biospy it

      Showed inflammation  so one doctor said that was positive for sjorgrens . I did not have a schimer  test.  I'm stressing

    • lissa02504
      lissa02504 nancy03023

      Posted

      Hi thank you for the info you provided . I did not  have a schimer test. I had the lip biospy which came back showing inflammation in the gland . So one doctor said it's sjorgrens and the other said it might be I'm not on medication or anything . I am using eye drops and mouthwash for dry mouth 

    • maggie98748
      maggie98748 lissa02504

      Posted

      I had the same experience, my lip biopsy came back showing chronic sialadentitis which I believe is inflammation of the salivary glands but they said it is not SS!!! It is so frustrating.
  • shaq26875
    shaq26875 nancy03023

    Posted

    Hi Nancy , I was diagnosed with SS by symptoms (painful joints, cracked- looking white tongue.) The blood test confirmed and I declined the lip biopsy. I was prescribed hydrochloroquine , 3 months later all symptoms disappeared so I stopped the med. Fast forward 18 months...all symptoms and more returned with a vengeance. another blood test showed strong positive for SS (and negative for any other autoimmune conditions) so back of meds. Took 6 months to work but still had  inflammation in tendons on palms which are aggravated by driving, or using my hands vigorously so  was prescribed methotrexate .1 took the minimal dose for 3 weeks  and got severe bronchitis. Maybe a coincidence ??? anyway I stopped the metho . 
    • lissa02504
      lissa02504 shaq26875

      Posted

      Hi Shaq sorry to jump into you and Nancy conversation . I saw you mention hydrochloroquine did you have side effects with this  medication
    • shaq26875
      shaq26875 lissa02504

      Posted

      Hi Lissa ..no side effects whatsoever. In fact apart from the palm tendons (which are fine when I don't drive or scrub the pots n pans  smile    it resorted my quality of life from being unable to even dress myself to lifting my toddler grandson.  as the rheumatologist explained to me hydroxychloroquin stops SS from progressing. 

  • donna57006
    donna57006 nancy03023

    Posted

    Dear Nancy,

    I never heard of LipiFlow treatment but I had Lasik done over 15 years ago and had Punctal Plugs for dry eyes.  I don't think it is covered by insurance, but it may be worth looking into if your eyes are dryer than before.  Blessings, donna

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