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  • #16
    Hello Dominorose,

    Because you do need lots of medical support, maybe it's good for you to get used to questioning all your doctors and building good therapeutic relationships with them. Obviously if they are not helpful, they are not such good doctors, or they are too busy to be very useful. It's really important that you put your needs first and get the courage to contact a prescribing doctor to clarify any doubts about prescriptions. They charge a lot of money, and should have a good team to deal with queries, one way or another.

    I think the first thing is to ask your question 'is it safe?' to the prescribing ophthalmologist of the steroid Vexol. And whether an antihistamine is useful for hypothyroidism? And what are the signs of eye allergy they are treating?

    Also you need a follow-up eye pressure check (intraocular pressure) if you start a steroid, although any Optometrist could do that too. My daughter has used steroid eyedrops for a while, and I did look into this, but sometimes we need it to control inflammation if the inflammation is more harmful. A doctor must tell us exactly what any possible side effects are, and exactly what the purpose of using a medication is. Then we can choose.

    Are you regular at Quinze-Vingt? Can you go back regularly with questions to adjust the treatment and eye management ongoing? (I don't know Paris but hopefully someone will post.) If things get worse, doctors expect us to come back for adjustment. It took me years to realise this. Is there one Ophthalomologist and team you want to work with? I am thinking that if, for example, you wanted to try scleral lenses eventually, it is best to be with a national eye hospital where newer treatments are easily available.

    Is your nutrition status OK now? are you iron-deficient, for example? drinking plenty water? Are you taking fish/flaxseed oil supplements?

    Anxiety is terrible until we settle into a treatment routine and the eyes start to feel better. Unfortunately in Emergency we sometimes get all sorts of random decisions and your eyes obviously haven't stabilised. Doctors are just not as well networked on practical details as we are, like wraparound sunglasses and different hot/cold compresses and cleaning agents - maybe take another look at Rebecca's 'Coping 101' www.dryeyezone.com. I would see how your current doctors respond to your questions and suffering before moving on. Do you have friends or family to go with you to the doctors? It helps so much to have an 'advocate' or supporter.

    It helps to make a simple Diary of symptoms, diagnosis, treatments (pain/burning can be rated 1 to 10). It also shows how our lives are affected and helps doctors to consider that and review the management.

    Love from London
    Last edited by littlemermaid; 13-May-2014, 10:12.
    Paediatric ocular rosacea ~ primum non nocere

    Comment


    • #17
      Hello Rose,
      the leading team on dry eyes is the one of prof Baudouin.
      The only other good clinic in the Ile-de-France is the - hopital Bichat:

      http://www.ncbi.nlm.nih.gov/pubmed/23514194

      Please read also this full text article on Azithromycin to treat blepharitis!
      I do hope, that the diagnosis of ocular rosacea is correct.
      Frequently ocular Rosacea is associated to Demodex mites. I don't know about this in France.

      Azithromycin - Azyter drops from Thea-Pharma-France is the standard topical therapy, as well as oral Doxy-Minocycline
      to treat the blepharitis.
      Azyter drops do burn and you may place a drop of gel or a little bit of ointment right before applying the Azyter drops,
      that should ease the pain somewhat.
      I think the Azithromycin-Azasite gel drops from the USA are not so painful.

      Steroids are absolutely necessary to suppress the ocular surface and eye lid inflammations.
      But steroid drops do cause more problems in dry inflamed eyes than good.
      So patients should only apply a steroid gel or better an ointment.
      In the USA for example Lotemax gel or ointment instead of Lotemx drops.

      If steroids don't work, the patients have to apply 0.03% or 0.1% Protopic-Tacrolimus or Elidel-Pimecrolimus Skin creame to get the inflammatory conditions under control.

      So ocular Rosacea is causing mainly a blepharitis and thereby a severe meibomian gland dysfunction.

      Comment


      • #18
        Hi littlemermaid,

        My main problem is when I call for an apointment with an ophtalmologist they're not available for months. I could wait, and thats what Im going to do, but I cant be sure he/she will be specialised in dry eye probs.

        The only places where dry eye specialists work in Paris are hospitals, but its never the same doctor and when I came to Prof. Baudouin service in march the doctor I met took a look at my eyes VERY quickly.

        The other option is to go to the emergencies of Quinze Vingt. and thats what I did last week but the doctors working at emergencies are "interns" (which means they're "students"). And thats why I was afraid I did not have a conjunctivitis like one of them told me...

        I will try the emergencies of another hospital tomorrow but I'm feeling more and more confused. Each doctor give me a different diagnosis...

        I got my blood analyses results today for my thyroid, and my thyroid peroxydase antibodies are way too high. I have called my endocrinologist and he told me it could be a Sjorgen's, but nothing more. I dont have any ophtalmologist to contact to make further tests, so what the hell can I do??

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        • #19
          Can someone in France help fast? Has anyone seen Serge Doan, for example?

          Nicolasdu92130 is in Paris and doing much better - he has wraparound eye protection - did you Personal Message him?

          It can be the same in UK depending how the doctor runs their clinic. Sometimes we can phone the doctor's office as an emergency and say 'reaction to their prescription' ie worse, which they are obliged to treat. Also we can pay an NHS doctor in private practice. Also a general practitioner (GP) or consultant from another specialism can telephone or fax to fast-track a patient into clinic. I'm not seeing why your Endo isn't fast-tracking your referral if he suspects Sjogrens.

          At this stage, the best thing I did was to ask other eye doctors (general and other specialisms) who to see and how to get access. I wonder if this Dr Marc Weiser is the kind of person who might advise you like that http://www.healio.com/news/print/ocu...-lasik-dry-eye. I'm just picking him out because he says he is interested in managing the dry eye surface quite carefully after surgery without too much steroid.

          Eucornea http://www.eucornea.org/about-eucornea is the European Society of Ocular Surface Disease specialists, if that helps. ESCRS http://www.escrs.org/ is the European Society of Cataract and Refractive Surgeons, which includes managing a difficult eye surface. What I do is look at the members and publications and speakers at meetings to get an idea what they are working on, which indicates what sort of team they've got.

          Here is PubMed search 'Paris dry eye' - anyone you can access? http://www.ncbi.nlm.nih.gov/pubmed/?term=paris+dry+eye I am looking at a PubMed search 'dry eye France' and seeing other hospitals outside Paris too. I wonder if there are ocular surface specialists you can access outside Paris, maybe travel by train.
          Last edited by littlemermaid; 13-May-2014, 13:34.
          Paediatric ocular rosacea ~ primum non nocere

          Comment


          • #20
            Littlemermaid thank you so much for your help you're an angel!! Yes I've sent Nicolas a pm but he doesn't reply

            I will call my endo back tomorrow, telling him I can't find an ophtalmologist by myself. Hope he will help.
            I'll take a look at your links thank you !

            Comment


            • #21
              Yes, please trust that you will find someone. It is good to ask other doctors because, in the last analysis, they chose medicine to help people. Many hospital ophthalmologists are also in private practice http://www.healio.com/news/print/ocu...-care-services

              Optometrists (high street) can be very good at knowing who is who, and in UK they can do fast-track referral. In fact, professional regulations state they have to refer to an Ophthalmologist if they see a problem or a disorder. Some Optometrists are taking an interest in treating dry eye but it's a worry they are under-informed and there is a big pressure to sell eyedrops etc.

              That's a good sign Nicolas is feeling better because he was pretty down and his last post was very good.
              Last edited by littlemermaid; 13-May-2014, 14:10.
              Paediatric ocular rosacea ~ primum non nocere

              Comment


              • #22
                Thank you littlemermaid.

                I have a question: my doctor (generalist, dont know the english translation?) gave me corticosteroids (oral pills) for my conjunctivitis. Can I take them?

                Comment


                • #23
                  Another question: I have LOTS of facial hair and my periods are really irregular. Am I the only one?

                  Comment


                  • #24
                    Hello Rose,
                    please have a Google search for:

                    dysfonctionnement des glandes de meibomius

                    There you will find a lot of informations on MGD!

                    Do have also a look for Dr. Cati Albou-Ganem. I think she does have her practice-Clinic somewhere in the
                    Ile-de-France. She does also have a blog about MGD and obviously has also available the Lipiview-Lipiflow system.

                    Up to now, you got 3 different diagnosis:

                    Allergic conjunctivitis, ocular Rosacea and ocular Sjoegren.

                    Severe ocular Sjoegren in your young Age is very unlikely.

                    If ophthalm do see people with red, thick and inflamed eye lids, many of them do Diagnose Rosacea.
                    But more than 50% of such diagnosis are not correct. Only if you do have a facial Rosacea too,
                    the Diagnose of an ocular rosacea may be right.

                    Comment


                    • #25
                      "I got my blood analyses results today for my thyroid, and my thyroid peroxydase antibodies are way too high. I have called my endocrinologist and he told me it could be a Sjorgen's, but nothing more. I dont have any ophtalmologist to contact to make further tests, so what the hell can I do??"

                      Hi Dominorose,

                      First, I'm so sorry you are dealing with this. We can all relate. It just sucks.

                      So I have a medical background (I'm a veterinarian, and yes, dogs get dry eye) and the first thing that pops out at me is what I put in quotes at the top- your Hashimoto's is acting up and at this point not well controlled. This is the very first thing I would try to correct on this journey. And yes, autoimmune diseases like Hashimoto's can be associated with other autoimmune diseases- Sjogrens', RA, etc- which are all associated with Dry eye. Don't freak yourself out about these others yet, one step at a time. And all of them can be managed and treated, so stay calm. Your doctor first needs to get your thyroid disease under control.

                      Second, I do think your history of anorexia and lack of a regular menstrual period suggests a hormone profile is in order- including a FULL testosterone panel. Lack of testosterone vs. lack of estrogen is more responsible for meibomian gland disease (a component of dry eye). Are you taking birth control pills? Something else to consider.

                      Stay calm, take one day at a time, and be vigilant with your health. It can take a LONG time to find good doctors and the right diagnosis and treatment. And it is SO frustrating. When I was at my worst I found trying to take each day separately as its own thing was the best way to function.

                      And the good news is that I feel great now, with PROSE lenses and neurontin. But it took me about 18 months to get there and it was the hardest 18 months so far of my entire life. So hang in there. You will improve too.

                      MLE

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                      • #26
                        Yes thank you Peter I have an appointment with her in one month, hope she will help. And yes I have light rosacea on my cheeks but nothing impressive...

                        Sjorgen is possible bc I have Hashimoto hypothyroidism... But I only have dry eyes, no dry mouth or joint pains.

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                        • #27
                          MLE thx for your answer. Yes I think I should take my testosterone/estrogen levels but which doctor can I relate to? My endo? I'm so lost...

                          I already know I have Hashimoto, I take levothyroxine for 8 years now (and yes I'm only 25...).
                          I dont take the pill.

                          Sorry my answer isnt really long but my eyes are killing me.
                          Just one last thing:

                          I've noticed when I "press" between my eyebrows at the top of my nose with 2 fingertips, it is really helping. Am I the only one to experience this?

                          Comment


                          • #28
                            corticosteroids (oral pills) for my conjunctivitis
                            www.nhs.uk/Conditions/Dry-eye-syndrome No one has ever suggested my daughter take oral steroids for conjunctivitis. She has only ever had to use topical steroids like FML. I think oral steroid is normally a last resort for a systemic inflammatory condition like lupus. I would research what the effect might be on your thyroid, for example - ask a Pharmacist or check websites like http://www.drugs.com/ and http://www.fda.gov/Drugs/. My first thought is 'is the general practitioner crazy?' but I'm not in a position to judge. Has he examined your eyes with a slit-lamp ophthalmoscope?

                            You are thinking your dry eye might be caused by polycystic ovaries? Our local gynaecologist says it is very common to have up/down cysts on the ovaries in young women. She says they are noticed more often now when women have eg appendicitis operations. And she thinks this is a cause of the terrible cramps teenagers can have which often wear off as they move into the 20s.

                            How are your eyes today? How often are you using lubricant eyedrops?
                            Paediatric ocular rosacea ~ primum non nocere

                            Comment


                            • #29
                              Thank you littlemermaid. Im feeling more and more discouraged. My family doesnt really help, I cant find any good doctor, and I am depressed most of the time so its really difficult to cope.

                              For the GP no he didnt checked my eyes at all even if I told him they were dry he prescribed my aerius and another med, but I didnt took them.

                              Today was aproximately ok until 5/6 pm...and after that pretty bad (

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                              • #30
                                Originally posted by dominorose View Post
                                MLE thx for your answer. Yes I think I should take my testosterone/estrogen levels but which doctor can I relate to? My endo? I'm so lost...

                                I already know I have Hashimoto, I take levothyroxine for 8 years now (and yes I'm only 25...).
                                I dont take the pill.

                                Sorry my answer isnt really long but my eyes are killing me.
                                Just one last thing:

                                I've noticed when I "press" between my eyebrows at the top of my nose with 2 fingertips, it is really helping. Am I the only one to experience this?
                                I have found this pressing between my eyebrows helps the pain too- you're not alone! There are 'pressure points' in the body which relieve pain- I think this must be one of them. Plus when your eyes hurt you probably get a lot of eyestrain/tension - I know I do. Do you find the pain seems to a general orbital pain or would you say it's your eye surface/cornea that hurts?

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