Should I have further tests for Sjogren's?

[lizlou29]

Hi All

My AD has got worse over the past 9 months, I've had dry eye for 7 years but coped fine with plugs on and off and only needed eye drops if I woke in the night.

I saw a rheumatologist a few months back. He seemed confused as to why I had been referred to him when I 'only' have dry eye, no joint pain or dry mouth. He ran ANA and RF blood tests and said based on the negative results he is 99% sure I don't have Sjogren's. He said that if I did he would just tell me to use eye drops and come back if i have any other symptoms. What I am confused about is that he didn't do the SSA/Ro and SSB/La which I thought were standard. My GP said she thought he would do these tests but if she sends me back to him I have to wait approx. 12 weeks on the NHS. Also, I have Raynaud's syndrome so I would have expected a positive ANA result.

If I had Sjogren's would I still have reflex tears? For example when I chop an onion my eyes stream like mad (though I normally wear googles for this now!)

Every time I see an opthamologist they ask about Sjogren's and all have said it is not normal for someone my age (29) to have severe AD unless there is something underlying it.

I'm still in the process of trying to work out if my thyroid is out of whack. MY TSH has gone up and down and last tested was around 6 but the lab refused a TPO test because the last time they (a different lab to where my blood tests normally go) tested my TSH it was 4.5 which they said was normal so no need to test TPO. MY GP said she won't request again unless my TSH doesn't lower after I've been on Levothyroxine for 2 months. I don't think she's very thyroid savvy so I've been looking at seeing an endocrinologist privately. My mother and brother both see the same one for there thyroid issues and he is good and thorough. My GP doesn't think it's necessary but I don't want to take Levothyroxine for the rest of my life without seeing a specialist.

I've come to the point that my life is so restricted and because every second I'm in pain I am willing to pay privately to speed things up and try and get to the bottom of what is going on. I actually wish for my dry eye of a year ago when I could still do pretty much everything. I had no idea how bad it could get.

[Faith1989]

I don't have Sjogrens but all my doctors have said "if your mouth isn't dry or getting dry, then you most likely don't have it" I have been blood tested and came back negative. I would only do the biopsy of the lip if you REALLY think you may have it and have other signs other than just dry eye. This is just my opinion.

I have read that dry eye is a progressive disease if left untreated. That is why treatments are so important.

Maybe think about changing or adding a new treatment that you haven't tried?

[lizlou29]

I really wouldn't want the lip biopsy done but then again I am really keen to rule it out. Would it be advisable to get the SSA and SSB blood work done? I don't really know enough about how it is diagnosed to know whether that is necessary.

My treatments so far this year (after things got worse in Feb):

Plugs in the upper ducts - I already had lowers
Doxy which I've noticed no change from
Lipiflow - useless for me and way overpriced
Cyclosporine which I couldn't tolerate and the eye doc didn't care as he said it's only effective in a small number of patients anyway
FML drops - no change
Salagen - made me feel nauseous, sweat a lot but no more moisture in my eyes and I felt like I had flu every time I took it
I use blephasteam goggles a couple of times a week but any heat near my eyes makes them even more red and painful. Warm compresses kill my eyes for a day or two after. I use a cold compress when necessary.
Use moisture chamber sunglasses
I also take 1000iu of Vitamin daily, initially was on 5000iu for a month as per my GP's recommendation
Omega 3 from Eye Science and Omega 7 (seabuckthorn oil)

[Faith1989]

It seems your eyes are very sensitive, mine are to. I use cyclosporine usually twice a day but sometimes just at night as it irritates me also. Maybe it's time to look into serum drops, diet changes and allergy testing. I had the blood work done and it came back negative. Apparently it's not that effective but I don't think I have Sjogrens anyway. Steroids work great for me, I use Lotemax or preservative free pred. I try to only use them every second or third day... My doctor said it was okay. But serum has no side effects so it may be good for your sensitive eyes.

Also, I used to always look for things to "cure" me. If something helps but I don't feel normal, I always used to say "it didn't work." I am still struggling with this part but there is no cure, so I feel like I need to just try to do what helps a little and try to wrap ,y head around the idea that I may have this forever. I feel your pain as I am in the same boat..

[lizlou29]

Thanks Faith 1989. I have had food and product/environment allergy testing which was negative for anything. I've cut out wheat, sugar and dairy anyway to see if it makes a difference.

I have come to terms with the fact I will have some degree of dry eye (until there is a cure) but I don't believe the way it is at the moment is the way it will stay and I think I'd lose my sanity if I didn't have some hope. Both myself and my opth were pretty sure the sleep meds I was on caused it to get worse but I have been off them nearly 7 weeks now with no improvement. I was always told any side effects from them go away once you stop taking them but I'm starting to wonder if this is true.

[lizlou29]

I wonder why steroid drops - FML or Pred - don't make my eyes feel better. I think I'm alone in this!

[Faith1989]

I overused visine for years, about 5 everyday. I SWEAR that is what caused it, but doctors disagree. The day I stopped was the day my eyes started to flare up. It's no big deal steroids don't help you.. They can't be used long term anyway for the most part. I have some days where I feel okay, and others I feel horrible. For example, yesterday was horrible. I didn't do anything different and my eyes were red and inflamed all day long. There MUST be something, but I haven't quite figured it out yet. If this ever DOES go away by some miracle, I will be the happiest person in the world. Lol

[Faith1989]

Also, do u have visible surface inflammation? Like red veins on the surface?

[lizlou29]

Also, do u have visible surface inflammation? Like red veins on the surface?

I don't have red veins. The whites are normally fairly clear but my eyelids get very red. Occasionally my eyes are bloodshot but not too often. On one of my opth visits I had inflammation on the surface but FML didn't help.

I do think about what I'd do it a miracle happened and this all went away. I like to think I'd never complain about anything again and I'd live every day to the max!

[farmgirl]

I am a Sjogren's sufferer. I have read that Sjogren's often goes hand in hand with Raynauds. I wouldn't be surprised if it (Sjogrens) is at the root of your problem. I tested normal for everything as well but the biopsy said otherwise. I only notice the dry mouth at night, during the day it is not an issue. I have discovered that my oils are fine as a result of the lipiview test. That is probably why the lipiflow didn't help you and I am suprised that the Dr would go ahead and recommend the lipiflow without having done the lipiview first. (or maybe he did and your oils were bad - sorry that was an assumption) If your oils are fine then you don't need the steam and compresses that kill your eyes and make your lids sore.

Having said that the knowledge didn't really help other than give me the understanding that this was not about to change and that I needed to find ways to cope. I have done the plugs, the restasis, the goggles, the oils, the drops including serum and had come to a place where I was manageable and not in distress.

This past week though I took it to another level and tried a mini scleral lense. I wore them for the first time today with success and I think they may be the answer to my prayers. If they work out as well as I hope they will, my only regret will be that I didn't try them sooner....F/G

[lizlou29]

Farmgirl - that's great that you are feeling so much better. I'm still not sure about the sclerals as I've been told not to get them due to the high risk of infection but I can't carry on living the way I am at the moment so I'm keeping my options open.

The Lipiview and prior examinations showed that I had bad oil and the follow up Lipiview showed a big improvement but I don't feel any improvement whatsoever and according to my consultant (not connected with Lipiflow) there doesn't look to be any improvement.

Can I ask why you had the lip biopsy if your blood tests were normal? My rheumatologist said he wouldn't let me do that as I clearly don't have it.

[PotatoCakes]

Couple of thoughts...
I had an eye doctor that was *convinced* I had Sjogren's, enough that I ended up with psychosomatic symptoms (NOT helpful). I switched doctors and realized the one I had been going to was not a nice human being, to put it mildly. I now warn people away from him. I'm not recommending you do that but you might mention to your eye doctor that you've been to a rheumatologist who says you do NOT have it and for your mental health, it would be helpful to you if they would consider other causes. What I realized about my former doctor, was that he had limited knowledge although he thought was was the biggest expert on the planet (just ask him). He may have been at one time, as he does have a reputation but at some point, he simply stopped learning. Because he thought he was such an expert, if he didn't know the answer, he would just declare one, regardless of how likely or how many other professionals disagreed with him. It's not uncommon for physicians to do that, particularly the older ones. So, if you and your rheumatologist don't think you have Sjogren's, it does little to no good for your eye doctor to continue mentioning it. You could try some of the treatments for Sjogren's but most of them address OTHER symptoms and have little to no affect on dry eye, at least for most sufferers.

Next, let's say you do have Sjogren's but it hasn't developed into anything besides dry eye, at this point. What would your next step be? You already have a rheumatologist for your Raynaud's, right? Unless you are suffering from severe Sjogren's symptoms, the recommendations are going to be pretty much the same as they are now... address the symptoms. At this point, there is no cure for Sjogren's, simply drugs that address the symptoms, and you're already addressing your symptoms, right?

Given that there's little a positive or negative diagnosis will give you (besides a more secure diagnosis) and the risks of a lip biopsy, is it something worth doing? IMO, no but, ultimately only you need to decide that for yourself.

If you develop additional symptoms for Sjogren's, or anything else, then I'd revisit additional testing but for now, I'd focus on addressing the symptoms you do have or looking in another direction.

[lizlou29]

Thanks Potatocakes

It's the rheumatologist that I'm not to keen on. My current opht is really good, takes his time and has an interest in new treatments. I've seen quite a few opths who think they are amazing and can't believe I don't like a certain eye drop or that the condition really affects my life etc. I'm just confused as to why all doctors have asked me when I'm seeing the rheumatologist again when he's already said I don't have Sjogren's. My GP keeps telling me she thinks I have something rare but doesn't know what, very helpful and encouraging ha ha! She also tells me how awful my eyes look every time I see her which is good for the confidence. There is also a nurse at the clinic I go to who tells me I'm not getting better because I'm not doing hot compresses 3-6 times a day and applying eye drops every 15 mins, I ignore her now but it did get to me when I was feeling very depressed.

I'm not under the rheumatologist's care anymore as he is sure I don't have any autoimmune condition he can treat, if I wanted to see him (or another rheumy) again I'd have to get my GP to refer me and wait a few months.

I'm seeing my opth next week, I'm going to ask him about Demodex, Azasite and autologous drops. My past opths have all refused to consider any of these and won't think past the drops, plugs and doxy standard treatment. I really hope he is a little more open minded. Drops and doxy definitely haven't helped but I can't say how much worse off I'd be without the plugs.

The only thing I read (and I could be completely wrong) is that plaquenil works much better if used as early as possible.

[NotADryEye]

I have had food and product/environment allergy testing which was negative for anything. I've cut out wheat, sugar and dairy anyway to see if it makes a difference.

When I had allergy testing done for food and product/environment allergies all the tests came back negative. However, I also had separate tests done for food and product/environment sensitivity. Allergies and sensitivities are very different and allergy tests will not pick up sensitivities. Also, allergists typically do not treat sensitivities.

In a previous post I listed all of the foods I had sensitivity to. I cut out all of that food 100% and went on a 4 day rotation diet, waiting 4 days before eating the foods consumed on day one. It took some time but my skin has cleared up tremendously. This is important because meibomian glands are a type of sebaceous gland. Consequently the state of your complexion is a good indication of the health of your meibomian glands. Now, I am still dealing with poor quality meibum. But I can no longer attribute this to food sensitivities. At the same time, had I not addressed the sensitivities, even if my other issue which is Hashimoto's thyroiditis, was suddenly better, then I would still have poor quality meibum.

This is why it is so important to address all of the co-morbidities and why even if you address one disease you may still not feel better. And also why it is important to keep at it and not give up.

[NotADryEye]

At this point, there is no cure for Sjogren's, simply drugs that address the symptoms, and you're already addressing your symptoms, right?

Have you looked into or tried Low Dose Naltrexone for Sjogren's? I'm on LDN for Hashimoto's. I can't say with certainty that it's helped but have heard that it can take a month or more to make a difference. I'm right around 1 month right now.