Question for Sjögren's Sufferers

[Tankie]

Hi there,

I've had two sets of blood tests for Sjögren's now, one when I was 23, one at 25, but both came up negative. However, I wonder if it's possible to be "boarder line Sjögren's", meaning that I don't qualify as a Sjögren's sufferer, but I'm only slightly out of the range?

In any event, some of the symptoms I suffer from are:
Extremely dry eyes: I experience dry eyes 24/7 unless I use treatment.
Extremely dry mouth: whenever I sleep for any longer than about 2 or 3 hours I get a very dry mouth. I typically don't sleep solid, and I usually get up in the night a few times, and each time I always have a drink of water because my mouth is so dry. I should mention that dry mouth is not a problem for me during the day generally speaking because I drink plenty of water; it only affects me when I sleep.
Low energy / fatigue: maybe it's because I'm not in athletic shape any more, or maybe it's because of my diet, but I feel very energy drained all the time. I need 9 to 10 hours of sleep every day, and even with that I usually take a nap at some stage because I can't stay up for a full 14 or 15 hours.

Anyway, to get to my question, can someone give me the lo down on "Muscarinic agonist drugs". I really don't know anything about them, how they work, which one works best, etc. but I'm curious to see if I could try them out under the supervision of my doctor. I realize that I'm clutching at straws a bit, but I figure that given the three symptoms I mentioned above, it's not such a silly thing for me to try. How much harm could it possibly do? (that's a serous question by the way!)

Thanks for your help

[Tankie]

One other thing I probably should add is that I suffer from keratosis pilaris (bumps on the supper arms).

As much as I would like to get rid of this I've come to terms with it since I've heard that it's in my DNA and nothing can be done about it. It doesn't look that bad on me anyway, I certainly don't have the worst care of KP that I've ever come across.

The only reason I mention it is because I believe there's a link between it and dryness / meibomian gland dysfunction.

[indrep]

tankie,
Has sleep apnea been considered? The dry mouth could be considered a condition from breathing through the mouth.

Not familiar with the drugs.

[Tankie]

In all honesty that is not something I've thought about. It's definitely worth exploring, but for whatever reason I instinctively doubt it because maybe I went a little far earlier in saying that dry mouth never bothers me during the day when I'm awake. It does sometimes, it's just I stay well hydrated, so it's not really an issue for me.

[spmcc]

Hi Tankie,

If your blood work for Sjogren's is negative/normal, I think the next step would be a lip biopsy just to be certain. I believe the website/webgroup: Sjogren's world http://www.sjsworld.org/ would be a good place to ask about that.

As for muscarinic agonist drugs, Dr. Orr can prescribe salagen/pilocarpine. However, I believe that evoxac is not something he'll prescribe. Maybe it's specifically because of my asthma... or maybe it's just a scarier drug and he won't/doesn't. I find that if a doctor hasn't prescribed something before, he/she is relatively wary of starting. You get the ping-pong treatment of "go ask someone else"... then that someone else says "go ask your specialist"... and you say "I just came from him/her and he/she told me to ask you"... and they say "well, if your specialist won't give it to you, then I can't/won't"... etc.

As for dry mouth (mainly) when you sleep, search your mind for anything that you're doing prior to bed. For example, do you take any medications at that time, drink alcohol or coffee/tea, etc.? A sleep study for sleep apnea might be a good idea (easy to do, just get your GP to refer you to the place that supplies the gizmo that you wear overnight). You could also ask someone to watch you while you sleep (CREEPY!) to see if you're a "mouth breather" which might point to a nose/septum problem.

Finally, I think you've been checked for diabetes, thyroid issues, and hormone levels, correct?

As for KP, I've been reading some literature on meibomian glands, and MGD and KP seem very similar. Both are hypothesized to be a problem of hyperkeratinization. For the body, there are topicals. But you can't/shouldn't put these on your lids. It's a pickle.

All the best,
Sheila

[Tankie]

Truly I owe all that I know about dry eyes to you spmcc. You are the master! Thank you! I'll look into these things and I'll probably talk to you about it in private at some point in the future.

[spmcc]

I don't have to convince anyone here - this whole thing SUCKS! And when it's not only your eyes but other things involved (mouth, skin, fatigue, etc.), you wish "why can't it only be my eyes?" even tho if it was only your eyes, it would still SUCK!

So explore everything you can. Make sure you have a good GP who will help you.

Oh, I forgot... a good dentist would help too - to keep an eye on your mouth and perhaps steer you to other doctors with more knowledge/experience.

[farmgirl]

Hi Tankie:

I do have Sjogren's confirmed with a biopsy but I test negative for ANA. Apparently 40% of Sjogren's do so it is not surprising that you do even thought you have symptoms. I do recommend a biopsy if you want to be sure but be reminded that it will probably leave you with a numb spot on your lip. I will say there is a lot of truth to what spmcc says as if I am laying on my back and mouth breathing my mouth will be so dry that water doesn't even hydrate it and I HATE when that happens. I agree that your problems could be, not so much sleep apnea as that is a different critter than mouth breathing, but certainly mouth breathing could be the source of your overly dry mouth at night.

Having said that, like you, I rarely have problems in the day with dry mouth. I am assuming it is because it is not that bad. On occasion I need a water bottle to sip on but I think if I keep well hydrated that is not a problem. With regards to Muscarinic agonist drugs I have used pilocarpine but although it does make my mouth water big time I have never noticed it helping my eyes. It leaves me with a weird taste in my mouth and the dry mouth seems worse to me after the effects wear off so it is not something I use on a regular basis. I think that is because I notice it more at that time.

You could try tying something around your head at night for a night or two to keep you from opening your mouth and see if that makes a difference. If you really want to confirm or deny the Sjogren suspicion I highly recommend the biopsy. I always maintain it is much easier to fight the monster if you know what the monster is. Good luck....F/G

[Tankie]

Thanks very much farmgirl! Very much appreciate your comments. I need to think about all this stuff and do some reading on it, but I will definitely take everything you said into consideration.

[spmcc]

Tankie,

Here are some pubmed abstracts regarding salivary gland biopsy and Sjogren's that you might want to look at (or maybe not):

The minor salivary gland biopsy as a diagnostic tool for Sjogren syndrome (2009) http://www.ncbi.nlm.nih.gov/pubmed/19650134

Utility of lip biopsy in the diagnosis and treatment of Sjogren's syndrome (2007) http://www.ncbi.nlm.nih.gov/pubmed/17417107

A follow-up study of minimally invasive lip biopsy in the diagnosis of Sjogren's syndrome (2007) http://www.ncbi.nlm.nih.gov/pubmed/17522950

Establishing guidelines for the role of minor salivary gland biopsy in clinical practice for Sjogren's syndrome (1998) http://www.ncbi.nlm.nih.gov/pubmed/9489815

The European Community Study Group on diagnostic criteria for Sjogren's syndrome. Sensitivity and specificity of tests for ocular and oral involvement in Sjogren's syndrome (1994) http://www.ncbi.nlm.nih.gov/pubmed/7979575

Association of patterns of labial salivary gland inflammation with keratoconjunctivitis sicca. Analysis of 618 patients with suspected Sjogren's syndrome (1994) http://www.ncbi.nlm.nih.gov/pubmed/8003059

Criteria for the salivary component of Sjogren's syndrome. A review. (1989) http://www.ncbi.nlm.nih.gov/pubmed/2661072

Comparing diagnostic criteria for the salivary component of Sjogren's syndrome (1986) http://www.ncbi.nlm.nih.gov/pubmed/3473648

There are more, but it's debatable how far back you want to go...

[Tankie]

O boy, I think I'm going to have to put on a pot of coffee and do a late night dry eye studying session! Thanks once again, you guys are awesome! Seriously, I really really appreciate both of your help.

Questions for farmgirl:
1. Does the biopsy cost money? If so, how much?
2. You mentioned that "it will probably leave you with a numb spot on your lip." Is this permanent or does it go away after a week or two? Does it change your physical appearance in any way?

Thanks again!

[spmcc]

One other thought... ****** did a test on me called FCT (fluorescein clearance test - basically 3 Schirmer's) where, during one measurement, he has you "tickle" the inside of your nose with a cotton swab while the paper strip is in your eye.

Supposedly, Sjogren's patients have an absence of nasal-lacrimal reflex tearing. In other words, if nasal stimulation increases tearing (measured by the Schirmer's test strip), then you probably don't have Sjogren's.

This is a much less invasive test than a lip biopsy (which, btw, is covered/free in Canada).

[farmgirl]

Interesting spmcc...how simple...no one suggested that for me but certainly sounds preferable to a biopsy...too late for me but maybe will work for you Tankie. Yes the numb spot is permanent but I don't notice it unless I rub it and I didn' have mine done in Canada but I am sure there would be no cost as it is a diagnostic test not elective. Is this how you were diagnosed spmcc?...F/G

[farmgirl]

What to think, what to think...these studies contradict themselves. The first one states: 'In this study, clinical presentation of sicca symptoms and positive serology reliably predicted the results of a lip biopsy.' But the second one goes on to state: 'In this series, clinical symptoms and serology did not predict positive lip biopsy.' Even the 'experts' can't agree...interesting...F/G

[spmcc]

Interesting spmcc...how simple...no one suggested that for me but certainly sounds preferable to a biopsy...too late for me but maybe will work for you Tankie. Yes the numb spot is permanent but I don't notice it unless I rub it and I didn' have mine done in Canada but I am sure there would be no cost as it is a diagnostic test not elective. Is this how you were diagnosed spmcc?...F/G

Keep in mind that FCT might be as conclusive as all the other tests (in other words, not 100% conclusive). But I've had it done as well as a bunch of other tests (no lip biopsy tho).

I don't have Sjogren's. My blood work was negative/normal and nasal stimulation provoked increased reflex tearing in the one eye. However, I've been in Tankie's position where you're trying to figure out if seemingly unconnected symptoms/problems are related. It's best to go to a GP, tell him/her everything, and be referred to a specialist (e.g., rheumatologist). The doctor's visits and the tests are covered in Canada. It's only if you want to go the naturopath route that you will pay.