Should I have further tests for Sjogren's?

[No tears in ATL]

Lizlou, I have used durezol (I think that is the brand name) but I must warn you that it is strong. It is in a different preservative than Lotemax and others and was about the only one I could tolerate. I had to use it for awhile and it did raise my pressure slightly, but I was using it for probably a month. You could maybe ask your doctor if you could use it, but to use it fewer times per day or for a short period, or with close monitoring. I'm not sure how most docs feel about this particular drop but I'll say the stuff worked well for me. Just be careful.

[lizlou29]

No tears in ATL - I saw my consultant today and he has started me on Lotemax today with an option to change to a preservative free drop if I feel it is causing any irritation. He's also started me on cyclosporine (Restasis) again as I didn't try it very long last time as it burned but he really thinks it may help me, my Schimmers was 1/2 in both eyes and there isn't much else I can take/use to try and improve that.

I said I was concerned that there is something underlying this that needs to be treated and he suggested being tested for Sjogren's again at some point as blood tests can change even though he had seen the rheumotologist report that said I don't have it. I hate thinking I have something whether it is Sjogren's or something else but don't know about it. I am making an appointment tomorrow with an endocrinlolgist to assess my throid condition and will go from there.

[PotatoCakes]

Couple more thoughts...
If your eye drops aren't helping for even 5 minutes, are you closing your eyes for at least 2 minutes after you put them in? I don't do that all of the time anymore but when I am having very bad days, and for medication like Restasis, I close my eyes after administration of drops. It does make a difference. The bad doctor finally gave me that tip after just assuming I'd know and chastising me for it.

Inflammation ... If you've been "crying" or have other unusual inflammation, I've found that cold green tea bags placed over my eyes helps immensely. They don't need to be super cold, I usually just take tea bags and run cold water over them, squeeze slightly so I don't end up with water running down my face and lay down with the tea bags over my eyes. It makes a huge difference if I've been "crying".

[Faith1989]

lizlou, how many times per day are you doing the Lotemax and for how long? Restasis twice per day? Just so you know Lotemax used to burn a little at first but I don't think it's suppose to. Give it some time, I love Lotemax... But hate that I can't use it everyday...

Good for you on trying restasis again! I just added apprilion to my regime, probiotics and juicing.. I have ocular rosacea though so it should help!

PM me and let me know your progress soon!

[duncangasmith]

I was diagnosed with sjogren's 5 years back after getting severely dry eyes and (i hate to say it) dry mouth. My thyroid was also messing around at that time and I suspect has phases when it is doing something odd. I have Raynauds too most noticeably from that same time. It may help too note that the other symptoms I notice most are joints that are painful when you first use them and respiratory problems mainly in terms of the ease at which I pick up chest infection and the time it takes to clear the airways after a cold (1 month typically).
I think I have always had blepharitis though it didn't bother me much. I suspect the dry eyes on top of the Blep has made the issues much worse.
Getting a Sjorgrens diagnosis doesn't help much except to make sense of what you're going through. They somestimes try a few drugs to see if they make a difference to you but after that it is a case of learning to ease the symptoms and discomfort by changes to lifestyle.
I hope this of some use by way of a comparison. Duncan

[GeorgeM]

How do doctors positively diagnose Sjogrens?

I also have dry mouth and dry eyes. For some time now, I have attributed the dry mouth to the fact that I had neck surgery due to cancer (Merkel cell carcinoma) which affected saliva glands on the left side of my neck. My family doctor just shrugs when I complain about the dry mouth and says, "the treatment is worse than the problem." Friends are urging me to see a specialist, but I don't want to waste my time if it can't be effectively treated. As for the dry eyes, my eye doctor is urging me to submit to this relatively new procedure that costs $850 per eye, is not covered by insurance, and which has a 85% success rate. I see her this week and am trying to research as much information as possible prior to my visit

I was diagnosed with sjogren's 5 years back after getting severely dry eyes and (i hate to say it) dry mouth. My thyroid was also messing around at that time and I suspect has phases when it is doing something odd. I have Raynauds too most noticeably from that same time. It may help too note that the other symptoms I notice most are joints that are painful when you first use them and respiratory problems mainly in terms of the ease at which I pick up chest infection and the time it takes to clear the airways after a cold (1 month typically).
I think I have always had blepharitis though it didn't bother me much. I suspect the dry eyes on top of the Blep has made the issues much worse.
Getting a Sjorgrens diagnosis doesn't help much except to make sense of what you're going through. They somestimes try a few drugs to see if they make a difference to you but after that it is a case of learning to ease the symptoms and discomfort by changes to lifestyle.
I hope this of some use by way of a comparison. Duncan

[lizlou29]

I also have dry mouth and dry eyes. For some time now, I have attributed the dry mouth to the fact that I had neck surgery due to cancer (Merkel cell carcinoma) which affected saliva glands on the left side of my neck. My family doctor just shrugs when I complain about the dry mouth and says, "the treatment is worse than the problem." Friends are urging me to see a specialist, but I don't want to waste my time if it can't be effectively treated. As for the dry eyes, my eye doctor is urging me to submit to this relatively new procedure that costs $850 per eye, is not covered by insurance, and which has a 85% success rate. I see her this week and am trying to research as much information as possible prior to my visit

Is the treatment Lipiflow GeorgeM?

[GeorgeM]

Yes, it is lipiflow. The patient is in a reclined chair or lying comfortably on a table. 1-2 drops of mild anesthetic placed in the eye(s) to be treated. Temperature gradually increased. I go back in on Wednesday, and I know the Dr. is going to press me for a decision. But at this point, I don't feel like I have adequate information to make a decision. Even if the folks here give me enough info to ask the right questions, that would be very helpful.

[lizlou29]

I've had the Lipiflow treatment and it didn't help me and it hasn't worked for a lot of people on this forum BUT I have aqueous deficiency as well as meibomian gland dysfuntion and it is designed for the latter. It is expensive but if money is not an issue then I wouldn't try and deter you from having it done.

You will find a fair amount of info on here about it. Just type 'lipiflow' into the search box. A few people have had good results from it but from our collective experience we think it is helpful for mild MGD and I can't see from your bio what you have been diagnosed with. Also, you will find that the people that have benefited the most have been given advice on what to do after the treatment i.e use an eye mask and gel at night and often a steroid plus some have had manual gland expression carried out after the Lipiflow. Please don't be pushed into it, I was desperate for relief but should have read up on it a bit more beforehand.