Is there anyone like me out there with just dry eyes and mouth - No joint pain

[baddabingtim]

Was curious to know how many people in this forum only suffer from dry eyes and dry mouth - like me - I have no arthritis, joint pain or fatigue....


I am a Male - 48 yrs old

[Sjenny]

I have dry eyes and mouth, no joint pain (at least not yet, knock on wood).  I'm a 49 year old female.

Sue

[baddabingtim]

so you are positive - what do you do for the dry mouth routine - my eyes have lower plugs so they are not too bad....My mouth I was given a prescription for evovax today....

[Sjenny]

My bloodwork is negative and I haven't had a lip biopsy done.

For the dry mouth, I use Biotene oral mouth gel and sometimes Pilocarpine (the effects last for 90 minutes at a time).  My mouth has also gotten significantly better after I started using low dose alpha interferon tablets (which I have to get from Canada with a script from a doc).  See

https://sjogrensworld.org/index.php?topic=5572.msg54577#msg54577

These tablets have not been approved by the FDA as they failed in clinical trials here.

Here are the studies from Japan where they apparently worked.

http://www.ncbi.nlm.nih.gov/pubmed/18034537?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=5&log$=relatedarticles&logdbfrom=pubmed

As far as eye dryness, I use Restasis and occasionally Genteal gel eye drops.

Sue

[Scottietottie]

Hi baddabingtim 

With any luck - you won't develop the ret of the cr*p! The UK has little info leaflets when you go to different departments and the leaflet about Sjogren's really concentrates on the dry eyes and mouth and not much else.
It does mention the rest of the stuff that can happen but definitely describes it as happening to a minority of SjS sufferers. I think a lot of docs are trained to believe that leaflet!!

reading this site - what it says looks unlikely. maybe it is the case though and it is that minority that have other symptoms that seek out support sites. I don't know. We do have a 'trades description act' here though and they could be prosecuted if their leaflet is totally misleading.

Dry eyes and mouth is uncomfortable enough but I hope you don't develop any of the other symptoms. You may well not.

Take care - Scottie 

[Marmotte]

Dry eyes and mouth are my main "complaints." I don't have a lot of joint pain--nothing I wouldn't figure was normal for my age (57). Three times I have had an episode where my whole body felt like I had been beat up or driven over by a truck. Came on suddenly and went away suddenly about three days later. And I have a light case of interstitial cystitis, which I think may be connected.

As I see how so many people have it so much worse, I remind myself that i should be grateful.

[Patze]

Hi Tim,

I have very dry eyes, and my mouth is not so bad.  I do have fatigue issues out the wazoo, and muscle issues to, but I don't have any joint issues (yet  ).  What fun this syndrome is!  I now also have swollen and painful fingers pretty much all the time (except when I'm very cold), and boy do they hurt (I don't know wether this has anything to do with SJS, it'll be interesting to see.

I'm a lot like Marmotte, I often feel like I got hit by a mack truck from head to toe (sometimes with a fever), and start to feel better in a week or several, it depends.

Take care -

Patze

[Sjenny]

I forgot to add that for the dry eyes, I also take fish oil tablets (3,000 to 6,000 mg per day) and Biotears.

Sue

[Scottietottie]

Hi - I've found that taking fish oil - in my case 3000mg per day - really helps my eyes and also seems to help bowel function.

Take care - Scottie