Please help with next steps in finding a solution?

[chapster]

Hi All

I have had dry eyes for the past 20 years. I am now a 35 year old male. The dry eye has become progressively worse and I now have MGD. My Schirmer results were 1mm in each eye and my glands are all blocked.

My worry is that the dry eye has been caused by an underlying condition. The other symptoms I have are:

- Dry throat but not so much dry eye - I have had very bad tooth decay over the last two years so maybe I do have dry mouth. My mouth is dry when I wake up in the morning.
- My facial skin is ery sensitive as is my scalp. Wind tends to irritate it
- I have fatigue
- Dry lips
- Very dry, swollen eyes which is affectingmy work life and personal life.

Every GP I see straight away says it could be sjogrens and sends me for a blood test. I have had about 8 of these blood tests over the years as well as a saliva test and alll results were negative. I know this may not mean much and I may still have sjogrens.

My question is do I try and treat the MGD by either:

IPL
Probing
Lipiflow

I live in Australia so for any of these I would need to travel to the US/Canada.

Or do I try some of the sjogrens treatments such as:

Plaquenil
pilocarpine
Evoxac

To see if it alleviates some of my symptoms.

What do you think would be my best next step?

Thanks,
chapster

[PotatoCakes]

It really does sound like you have Sjogren's. I can't remember exactly what the percentage of negative tests for positive people are but it's pretty high and you have quite a few of the symptoms (tooth decay is a big one). I can't tell you what to do but if I were in your position, I'd try one of the drugs before the treatments. The drugs may help your other symptoms whereas the treatments may only help with your eyes but not the other. Plus, I assume you can get the drugs in Australia.
I tried Evoxac for my eyes and quit due to the side effects but one of the unbearable side effects for me was extreme salivating; given that you have dry mouth (I don't), it might help you a lot in that aspect. I'm not at all familiar with the other 2 except for what I've read on here.

[y-gwair]

So sorry to hear of your problems, I have very dry mouth, eyes and skin too, so I have great sympathy for what you're going through.

Have you actually had a referral to a rheumatologist yet? I take it that the tests included Ro/La antibodies (which you probably already know are only positive in about 70% of cases) absolute diagnosis is usually confirmed via lip biopsy. It's not pleasant, the lip injection is the worst part, but worth having done to be sure about what condition you have, and possibly so you may qualify for any new treatments for Sjogren's in the future. However, bear in mind that the majority of people who consult rheumatologists re. Sjogren's come away with a diagnosis of Sicca Syndrome (which just means extreme dryness), especially if there are no symptoms of joint/muscle involvement, Sjogren's is actually quite a rare disease. Sicca syndrome quite often goes alongside thyroid disease; has your GP tested your thyroid levels/antibodies? Also iron levels, as anaemia can also cause symptoms of dryness (rheums. usually do these tests to exclude these conditions. They usually ask about depression too, as long periods of depression can also suppress glandular function).

Tooth decay associated with dryness is quite specific, namely small holes/enamel lesions at the gumline, and erosion of the enamel at the edges of the incisor teeth. The first thing that is usually prescribed for dry mouth is pilocarpine, a drug which stimulates exocrine glands and stimulates flow of saliva, and may help with eye dryness (see thread on Plaquenil). If you've been dry for a long time it can take up to a couple of months to work fully. Pilocarpine tablets can be quartered and taken as necessary, helps keep saliva flowing evenly through the day. Side effects include sweating, and gastric symptoms. Not everyone has them, and they do improve with time.

Plaquenil, it can help with oral sicca, I've certainly found that to be the case but not all rheumatologists will prescribe it for conditions that don't involve systemic/musculoskeletal symptoms.

Re. meibomian glands/skin, it may be you have an additional condition such as rosacea which affects eyes and skin, and might be worth seeing a dermatologist. I've always assumed my dry skin was just 'sensitive' or dry because of thyroid disease, but recently I've started flushing badly and become light sensitive. I now seem to have MGD in addition to aqueous deficiency, have just started ciclosporin, in addition to having plugs and trying steroids; my ophth. assures me it's helpful for MGD as well as inflammation from general dryness, time will tell. I'm not sure plaquenil has helped much with the eye symptoms, though it's been very effective for muscle aching/fatigue.

Good luck!

[y-gwair]

Just to add re. dry mouth, virtually every commonly-used medication makes my dry mouth worse: paracetamol, codeine, anti-histamenes, zantac, decongestants, anti-depressants; I hadn't really noticed as I used to take painkillers quite frequently for aching before starting plaquenil, but really notice the effect they have now I take them less frequently. I'm sure they probably affect eye dryness too. I find cutting these down to a bare minimum has helped.

Re. diagnosis perhaps sign up to the forum Sjogren's World; there may be other aussies there who can recommend a good rheumatologist in your part of the world. It can make all the difference seeing the right person. In my experience not many rheums are terribly knowledgeable (or sympathetic) about Sjogren's/dryness issues.

[chapster]

Hi PotatoCakes

I think you are correct that I have sjogrens. I just wish I could get a diagnosis which would allow me to try the correct medication. I can propabaly get plaquenil OTC as it is a malaria drug. I am not sure about the others though. Do you suggest plaquenil as instead of the other two. I heard it may take a while to work.

Hi y-gwair

I have never been referred to a rheumatologist and instead was referred to an immunologist who sent me for a saliva test. The other specialists I have seen are a Dermatologist who said my skin isn't dry. A contact dermatologist who suggested sjogrens, loads of GP's and loads of Opthalmologists. I have had my thyroid tested a number of times and it has never been an issue.

I also noticed that I don't sweat much on my face. I do heavy weight training at the gym and I hardly sweat. I sweat under my arms but not on my face. My dryness seems to be a lot worse at night and early mornings.

I have noticed the same thing with painkillers. I cant take any antihistamines, codeine, etc as I will suffer for the next two days. I find paracetomol not too bad.

Do you think I should see a rheumatologist or should I just try and get the drugs and test them out?

Many thanks for your help,
chapster

[PotatoCakes]

I agree with y-gwair, you need to see a rheumatologist if at all possible. Self-prescribing, particularly drugs like those mentioned above, isn't the best idea (although I definitely understand the temptation).

You mention a saliva test, I assumed by that you meant a lip biopsy (where they remove a salivary gland to test it) but it sounds like that is not the case?

You mention getting the right diagnosis in order to try the correct medication, will none of the physicians you've seen who believe it is Sjogren's prescribe based on their belief? With a 30% "error" (neg test for pos patients) rate, it seems terribly wrong for a physician not to prescribe something when you so clearly have many Sjogren's symptoms. The rheumatologist that I saw tested me for Sjogren's and even though I have no symptoms besides dry eye and my test was negative, she still prescribed Evoxac on the off chance it might help. Have you asked any of your physicians about these drugs and if they would consider prescribing one for you?

I can't make any specific drug recommendations, particularly since I've only had limited (3-days) experience with one out of the three drugs mentioned but I think all three are worth bringing up to your physician(s) and working up a plan to see if any of them might help you.

[y-gwair]

My rheum. thought I had Sjogren's until the specific tests all came back negative. That's why I have a dx of UCTD with sicca. I think it's unlikely you have Sjogren's if you have no rheumatological markers or co-existing AI conditions at all. Sjogren's has quite a different pathology to idiopathic or autoimmune sicca; saliva/lacrimal glands are gradually infiltrated, scarred and destroyed by white blood cells, a process that takes many years before symptoms are noticed, which is why the lip biopsy is considered a fairly conclusive test. In sicca syndrome, the glands aren't destroyed but the neural messaging system that switches them on is disturbed by inflammatory substances, or hormonal changes. That's why pilocarpine is first line of treatment, it usually works well if the glands themselves aren't atrophied. The main purpose of Plaquenil in Sjogren's is to arrest glandular destruction; there is now some evidence it will also damp down other inflammatory substances that cause non-infiltrative sicca secondary to autoimmune disease (highly controversial among rheums; some will let you try Plaquenil, others not). If your sicca isn't autoimmune in origin, Plaquenil won't actually work to relieve the dryness.

I really wouldn't be tempted self-medicate with plaquenil either. It's a pretty heavy duty drug which has a risk of retinal toxicity, and you need regular eye tests to assess the condition of the retina while you are taking it. This is mainly associated with long-term use, but for a very few people it can happen early on (a couple of people on the Sjogren's forum had to come off after a few months because of retinal/macular changes so it does happen). Any retinal damage is irreversible. Many people report blurring of vision and loss of some visual acuity on starting the drug, myself included which worries me. You also need to have your liver/kidney function tested before starting, as it can damage these organs. It's not a drug to take if it turns out you don't have to. Pilocarpine/evoxac are more targeted to stimulating secretions, and are usually the first-line treatments for sicca symptoms.

[chapster]

Thanks for the help. I agree that self medication is not idea and I wish there were other ways. I have been to so many specialists and have yet to find one that I have confidence in. The last eye specialist charged me a fortune and all I was told is I have MGD. He said I should try testosterone cream but I have been waiting 6 months for him to get it for me as it has to be made up by a compound pharmacy.

I often find that doing my own research yields better results. The medical system in Australia is not as specialised as the US it appears. Drugs are also often not available. Restasis is almost impossible to get. I am not sure if Salagen or Evoxac are available here but I will make some enquiries.

The saliva test I had was a scan to test how much saliva my mouth produced in a given time while sucking a lozenge. I was sent for this test by an immunologist. I dont think it is as accurate as the lip biopsy.

Is their a generic for Evoxac as it looks like it is very expensive when doing a quick search on the net. Between salagen and evoxac, which do you think would be good to start with? I often find that I need to suggest drups to the specialists in order for them to prescribe them to me.

Many thanks for all the advice.

[y-gwair]

Agree fully re. specialists, I feel the same after 20 years being fobbed off, told there was nothing wrong only to be eventually diagnosed with thyroid disease, severe dry eye, UCTD etc. The problem was GPs doing the wrong tests; being referred either to the wrong specialists, or to ones with no expertise in my specific problems. Researching the internet has helped find people with the most appropriate professional experience, and paying to see them privately. It has cost a fortune, but it has helped at lot.

No, saliva flow isn't the same thing as lip biopsy (presumably all it told you was you had a dry mouth, which you probably already knew!).

Salagen/pilocarpine should be available, it's quite a commonly used drug for dry mouth in people who've had head radiotherapy, I'd be surprised if your GP couldn't prescribe it for you. Evoxac is newer, no idea if you can get in Australia - it was refused a license in Europe and someone on here said it's not available in Canada either. It's probably the best place to start for treating dry mouth.

Restatis may not be available in Aus, it isn't licensed in the UK either, but specialist eye hospitals can prescribe veterinary ciclosporin 'off label'. We've just spent weeks hassling various people to get my prescription via NHS (=free), it finally came through this week. Sometimes you have to be very persistent with specialists (or usually, their secretaries), if you don't keep hassling and reminding them they quite often just forget about you completely. To soon to say if the ciclosporin ointment having an effect yet, but I've found it very easy to tolerate so far, none of the redness and stinging other people report using restasis.

Good luck, I hope you find some relief soon.