Any males here with diagnosed Sjogrens?

[Cabut]

Hi I am a 61 year old male and exhibiting some of the symptoms of Sjogrens Syndrome, particularly dry mouth (night time) and dry eye. I live in the desert southwest where the indoor humidity is often below 5%. I am healthy, take no medications, but this dry eye thing is driving me to distraction.
I know 90% of hose diagnosed are women and I'd love to hear from any men who were diagnosed with this,specifically your symptoms and what tests you had. It seems there is little to do if you have it except treat the symptoms, is that correct?

Thanks.

Cabut

[calli66]

I'm not male, but I have Sjogren's. I know there are some males with SjS who post at the Sjogren's World forum here.

Mine was diagnosed last fall through blood tests. My main symptom is dry eyes, but dry mouth is sometimes a problem, especially at night.

And I know about dry climates, living in central New Mexico. My humidity meter usually reads "Lo"---less than 20% in the house (more like 10% really). I sometimes spray in the air or mop my brick floors with plain water. I get pretty tired of listening to a console humidifier---takes 3 gallons a day to get it over 30%.

Get a "swamp cooler" instead of an air conditioner for summer if you can. Mine can keep the house at 50% humidity during the hottest months.

Spring's a hard time here in New Mexico--anyway, through June it's really dry, windy, with high pollen counts....misery!

Calli

[Cabut]

I'm not male, but I have Sjogren's. I know there are some males with SjS who post at the Sjogren's World forum here.

Mine was diagnosed last fall through blood tests. My main symptom is dry eyes, but dry mouth is sometimes a problem, especially at night.

And I know about dry climates, living in central New Mexico. My humidity meter usually reads "Lo"---less than 20% in the house (more like 10% really). I sometimes spray in the air or mop my brick floors with plain water. I get pretty tired of listening to a console humidifier---takes 3 gallons a day to get it over 30%.

Get a "swamp cooler" instead of an air conditioner for summer if you can. Mine can keep the house at 50% humidity during the hottest months.

Spring's a hard time here in New Mexico--anyway, through June it's really dry, windy, with high pollen counts....misery!

Calli

Thanks Cali!

I am in the Sonoran Desert in Az, about 20 minutes from the Mexican border. It has been unrelentingly dry and the mesquite pollen is terrible now. My skin is really dry. Is there anything special you put on it? Also, have you lost pigment in any areas of your skin? I have hesitated to have any tests done as there isn't much you can do about Sjogrens, is there?
I do have a swamp cooler, but as you know it is only good until the monsoons arrive.

Best,
Cabut

[calli66]

I don't know anything about loss of skin pigment (vitiligo) or whether it is connected with SjS in any way.

Try to get a comprehensive physical and have some tests run. Sjogren's is called a "syndrome" because there's not a single definitive test for it, and the symptoms are similar to other diseases/problems, so it takes a bit of investigative work on the doctor's part to rule out other things. Some of the blood tests are the ANA levels (anti-nuclear antibody), complete blood count, complete metabolic panel (sometimes there can be anemia), tests for Rheumatoid Factor, Thyroid tests, etc. I think they drew about 12 vials of blood that first month I went in.

An eye doctor can assess the dryness and do a Shirmer's test to measure the tear production. Sometimes the doctors need to do a lip biopsy to confirm the Sjogren's diagnosis--looking for the presence of white blood cells in salivary gland tissue (I'm not sure about this). But you're definitely not at that point yet.

There ARE medications that can help. Auto-immune diseases can damage internal organs, the nervous system, the joints, and cause extreme fatique. In mild cases, an immune system-suppressing medication, Plaquenil, is given---that's supposed to improve symptoms and slow progression.

It's best to know for sure what's going on....

For pollen---Rebecca's recommendation of foam-lined sunglasses is the best solution if you have to be outside. Rinse your eyes with plain saline solution a few times of day to get rid of the particles.

Dry skin---I have it too. I keep trying different products, but I use ladies's fancy "natural" creams and lotions and can't imagine recommending them to a guy. Try Cetaphil moisturizer, maybe. Use a non-soap shower gel instead of soap----it's less drying. Ask the pharmacist to suggest something---they're pretty good about that.

C

[Cabut]

I don't know anything about loss of skin pigment (vitiligo) or whether it is connected with SjS in any way.

Try to get a comprehensive physical and have some tests run. Sjogren's is called a "syndrome" because there's not a single definitive test for it, and the symptoms are similar to other diseases/problems, so it takes a bit of investigative work on the doctor's part to rule out other things. Some of the blood tests are the ANA levels (anti-nuclear antibody), complete blood count, complete metabolic panel (sometimes there can be anemia), tests for Rheumatoid Factor, Thyroid tests, etc. I think they drew about 12 vials of blood that first month I went in.

An eye doctor can assess the dryness and do a Shirmer's test to measure the tear production. Sometimes the doctors need to do a lip biopsy to confirm the Sjogren's diagnosis--looking for the presence of white blood cells in salivary gland tissue (I'm not sure about this). But you're definitely not at that point yet.

There ARE medications that can help. Auto-immune diseases can damage internal organs, the nervous system, the joints, and cause extreme fatique. In mild cases, an immune system-suppressing medication, Plaquenil, is given---that's supposed to improve symptoms and slow progression.

It's best to know for sure what's going on....

For pollen---Rebecca's recommendation of foam-lined sunglasses is the best solution if you have to be outside. Rinse your eyes with plain saline solution a few times of day to get rid of the particles.

Dry skin---I have it too. I keep trying different products, but I use ladies's fancy "natural" creams and lotions and can't imagine recommending them to a guy. Try Cetaphil moisturizer, maybe. Use a non-soap shower gel instead of soap----it's less drying. Ask the pharmacist to suggest something---they're pretty good about that.

C

Calli,
'
Wow, thank you for the advice and info. I do have a low B12 count and my doc just put me on sublingual B12 tabs. I can't understand this because I am pretty healthy and I am on no meds at all. Still I exhibit a lot of the symptoms of Sjogrens. When you say it takes a bit of investigative work on the docs part, this is what frightens me. It could be just a matter of opinion.
I would like to steer clear of meds because there are usually side affects. Unless I am in terrible pain or it is life threatening I would like to deal with things using diet and exercise. This whole thing started for me after taking valium for an extended period of time (2 yrs) for sleep! Go figure! I went to the UK for help getting off these benzodiazepines and discovered that there is such a thing as Benzo Withdrawal Syndrome that can last for years. Some of the symptoms are the same as Sjogrens: http://www.benzo.org.uk/slistz.htm

My eye doctor is a surgeon and says I have dry eye syndrome. There is something baffling about this, and I just can't put my finger on it. I have had lloads of tests, but maybe not the right ones. Everything except the B12 was negative.

All the best,
Cabut

[calli66]

I'll write you a Private Message---

C