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  • immune system questions

    During a recent visit with an opthamological (sp?) specialist, the guy spent 40 minutes with me reviewing my situation, meds and daily routine. He supported the med regimen my opthamologist already had me on and made several detailed suggestions for improving my routine. Then he said something like:

    "..you know, your blepharitis, MGD, asthma and various allergies (I'm allergic to everything) are likely all aspects/indicators of a screwed-up immune system. Your body is reacting to a hostile environment and also attacking itself on a daily basis."

    This really has me thinking. What he says sounds right. It fits with my experience. I mean, geez, my skin is allergic to my own sweat. And the rest of the visit was very positive and practical. What do people know about this? Does solid research show that dry eye, asthma, etc. can all be different facets of some larger condition? Is there stuff I should be reading?

    All feedback is useful.

    Thanks.

  • #2
    If it were me, I think I would see my physician and asked to be evaluated and/or worked up for an autoimmune problem.
    Every day with DES is like a box of chocolates...You never know what you're going to get.

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    • #3
      William, this guy might have something. He also may be "blowing smoke at you." It's hard to tell.

      "..you know, your blepharitis, MGD, asthma and various allergies (I'm allergic to everything) are likely all aspects/indicators of a screwed-up immune system. Your body is reacting to a hostile environment and also attacking itself on a daily basis."
      It's hard to KNOW. Being at this for 7 years myself, I've been to more than a few doctors. It almost sounds as though this doc is hinting to you about having autoimmune disease. That's fine, but he didn't give you any concrete information to follow either.

      That's another problem. There isn't much to follow because autoimmune disease is so evasive. It's hard to prove you have anything. Sjogrens Syndrome is known for causing dry eyes and dry mouth because it attacks the moisture producing glands. I've just been diagnosed with this. It's much more common in females than males, but nothing you shouldn't look into. You might want to see about seeing a GOOD rheumatologist.

      This leads to another problem. A GOOD rheumatologist is hard to find. Even though I've been diagnosed with Sjogrens, I'm already doing everything possible for the dry eyes. I can expect the problem to be with me the rest of my life. On the flip side (for me) is that I'm being treated systemically for all my symptoms and am doing much better. You may want to follow this route, but don't expect much and have a lot of patience.

      Lucy
      Don't trust any refractive surgeon with YOUR eyes.

      The Dry Eye Queen

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      • #4
        hi William. I dont have asthma but got tested for evvironmental allergies yesterday and seemed to be quite allergic to just about everything. Tomorrow I get a shot that is suppose to make me immune to those allergens for a while. I doubt it will help my eyes but trying anything as I am that desperate. I dont know the answer to your question but if you are able to control your other problem(s)even if it does not help your eyes at the very least will help those other things. I dont care about stuff I am allergic to. All the sneezing, watery itchy eyes, stuffed and runny nose that I got for bit in spring and summer is nothing compared to this dry eye business for me. So normally I would not bother with allergy testing and shots but any chance it can help my eyes I will do it. I think that even if one does not have auto immune problem, if they got dry eyes, something most people dont get to our degree, then clearly our immune systems are off. Does anyone know what percent of patients have sjorgens or some degree or variation of it without actually having it show up on their antibodies bloodwork? It did not in mine yet I was still diagnosed with some form of sjorgens. The doctor has also ordered some more blood work which will hopefully answer more questions. Has anyone had the lip biopsy? I dread doing it and holding off for now. Has anyone been diagnosed with sjorgens yet their eyes improved on their own? Is there such a thing?

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        • #5
          I had a lip biopsy done. If there is no good reason to have it done, skip it. Unless you need to PROVE you have Sjogrens, it's just not worth it. At the same time, the biopsy can come back negative and you're back to square one. Unless you have extremely dry mouth, lips and throat (in addition to the eyes) it is unlikely your lip biopsy would be positive.

          The only reason I can think of to NEED to prove you have something is perhaps if you're trying to get disability. My GP took it for granted that I had Sjogrens just before my bloodwork came back positive and put my on systemic meds. This has done nothing for my dry eyes, that's the part to remember if you're on this board. Otherwise, I am feeling better - just not the eyes.
          Don't trust any refractive surgeon with YOUR eyes.

          The Dry Eye Queen

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          • #6
            Hi Lucy. My lips and mouth are dry I am always drinking water. But they dont bother me. My throat it soar and until now did not think about it being dry. I guess I will skip it. But can you tell me what the biopsy is like? I feel that because I have dryness in so many places and is so painful, and has not improved since it began in June, that he could be right. I dont want him to be. You said that your meds for dry mouth have not helped your eyes. Are you referring to Salagen or Exovec? I read somewhere the latter may possibly help. How long have you been on them? Does it help feminine dryness? Never realized how painful that too can be. I wish so bad I knew what caused all this, did i do something beggining of summer to make all this happen to me.

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            • #7
              Vicki-you asked about a lip biopsy and I told you. I'm not even going to attempt to take on the rest of the stuff. It's personal and you shouldn't be asking someone to answer this stuff on a bb about dry eyes.

              Someone else might step up to the plate, but not me. We have been over and over and over and over this stuff with you.
              Don't trust any refractive surgeon with YOUR eyes.

              The Dry Eye Queen

              Comment


              • #8
                Vicki,
                I was sorry to read in your other thread about your Sjogrens diagnosis. It makes sense considering all the symptoms you're struggling with. I would strongly recommend if you have not done so already that you contact the Sjogrens Syndrome Foundation and find out if they have a local support group somewhere near you or, if not, if there are enough members near you to form one. You have a lot of questions on a lot of topics that go well beyond dry eye and I am sure they will be better equipped to help with some of them. I believe they have some literature that may be helpful as well.
                Rebecca Petris
                The Dry Eye Foundation
                dryeyefoundation.org
                800-484-0244

                Comment


                • #9
                  William53,

                  I don't know much about that at all and "dry eyes + asthma + allergies" doesn't ring any bells with me but then I wouldn't know. I agree with Lucy that the suggestion was pretty vague.

                  At the same time though it's very valuable to get that much time out of a clinician and if that's what their thinking was at the end of it, if it were me, well, I might try to get a referral to an immunologist (?) as a step towards exploring it further. Or, you might start poking around on sites with auto-immune disorder information like the one at this link.
                  Rebecca Petris
                  The Dry Eye Foundation
                  dryeyefoundation.org
                  800-484-0244

                  Comment


                  • #10
                    Originally posted by Vicki In Oregon
                    hi William. I dont have asthma but got tested for evvironmental allergies yesterday and seemed to be quite allergic to just about everything. Tomorrow I get a shot that is suppose to make me immune to those allergens for a while. I doubt it will help my eyes but trying anything as I am that desperate.
                    There we are again.

                    Last time here, Vicki, because you're a full-grown adult and I don't intend to pester (more than this ):

                    I'm worried for you. I'm worried that you're going to get WORSE, not better, if you can't get a handle on the anxiety-driven approach here.

                    I'm going out on a limb here and guessing that others may feel the same way.

                    I wish you all the best, but would STRONGLY caution you take much, much care, and give much much time, research, and thought, to what you do to your body, what you put IN your body, what you let PHYSICIANS do, and at what speed you move.

                    Neil

                    Comment


                    • #11
                      For Lucy

                      1. If you don't want to answer a question, maybe you can just not answer rather than tell me you won't answer? In previous posts you again say you won't answer me (which is answering me but not answering my questions), which implies that my question is not valid and is a put down in front of everyone here. If you want to say that you can e-mail me so not everyone is reading such a response to me.

                      2. yes you said you had lip biopsy. That is why I asked you what they do since I do not know. If you don't wish to answer that is more than fine. Just ignore me. Please.

                      3. I entitled the post "sjorgens..." so that only those interested in the topic will click it. If Rebecca thought it was inappropriate for this board as you say, she would have moved or removed it.

                      4. You have talked in great deal about sjorgens related issues on this dry eye board for some time. Not sure why I can't make a post about it.

                      You can disagree with my notions, but please respect me the way I do you. Thank you.

                      Originally posted by Lucy
                      Vicki-you asked about a lip biopsy and I told you. I'm not even going to attempt to take on the rest of the stuff. It's personal and you shouldn't be asking someone to answer this stuff on a bb about dry eyes.

                      Someone else might step up to the plate, but not me. We have been over and over and over and over this stuff with you.

                      Comment


                      • #12
                        Vicki and Lucy

                        I am on a deadline today and don't have time to referree this diplomatically. I'm going to ask both of you to take this conversation into email or private message. I would be happy to remove any of your messages if you request me to do so. I try to avoid any unnecessary censorship. People are expected to - and, thankfully, virtually always do - show good judgment here.
                        Last edited by Rebecca Petris; 09-Nov-2006, 06:48. Reason: Removed request to Vicki.
                        Rebecca Petris
                        The Dry Eye Foundation
                        dryeyefoundation.org
                        800-484-0244

                        Comment


                        • #13
                          All I had to do was use the "search" feature. I typed in "lip+biopsy").

                          http://www.dryeyezone.com/talk/showt...ght=lip+biopsy
                          Don't trust any refractive surgeon with YOUR eyes.

                          The Dry Eye Queen

                          Comment


                          • #14
                            I can't help you much, but I can say having an immune problem definately can trigger your dry eyes. I have Lupus (SLE) it's an autoimmune disease.... it is in remission but my dry eyes are still bad from it. I had a transplant before and was on anti-rejection meds which are immunosuppresives... so shuts down my immune system there too... so all the way around Im getting hit by the immune system... im on dialysis right now again until i get another transplant... and my eyes are VERY bad right now... im going to be making an appointment with an allergy doctor and see if he cant give me something to help. I have tried over the counter allergy meds, dont help none.. my kidney dr gave me samples of singulair but no help with that either... my eyes still water, ITCH and are VERY red.. and i got a runny nose. It has to be allergies, but nothing is helping.

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                            • #15
                              Thanks for your responses. I'll do some reading on the immune system just to get a general sense of how it works, or is supposed to work, and what can go wrong. His comment was, as you've noted, pretty vague. At my next visit I'll ask for more details about this and what resources, e.g. tests, immunologist, rheumatologist, he would recommend. I can also ask my regular opthamologist, someone I trust, what she thinks.

                              I've been assuming that I don't have Sjogrens because my diagnosis is blepharitis + MGD, and I don't have any dry mouth symptoms. But some reading about Sjogrens would help.

                              Best,

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