Re: ?s re Sjogrens, Dry mouth, dry eyes

[Guest guest]

Hi Deb,

I have had dry eyes(not mouth)for many years. I personally don’t think I

have sjogrens because NO eye drop has given me relief. I used everything

from antinflammatory drops or allergy drops to thick drops. I think I have

some kind of infection in my sinuses and that is causing my burning of the

lids and eyes. I think it is a myco and just have not been on the drug long

enough that can stop the mycos from having babies. I am going to talk to my

ENT next week.

As for sjogrens I think it is caused by a myco also. Some people have

lessening of their symptoms on Minocin….others do not. I did have the same

problems with watering about 9 yrs ago. I had a great opthamologist who put

in punctual plugs in. They are sooo tiny. But they eventually fell out. The

doc quit and I had to go to another who had a tech put them in. One of them

scratched my eye all weekend… when I was finally seen by the tech she said

my eye did not tolerate the plastic (not her fault of course) and doc wanted

dissolvable plugs put in. She put in the collagen plugs and I never went

back. Last year I went to another ophthalmologist who put 1 plug in to see

if I really needed the plugs (Huh). I waited in his office 1 ½ hrs to see

him. I did not go back and took out the plug myself.

My eyes are now very dry. More so in the winter and some in the summer. I

think the chemicals hubby uses in his wood workings causes it in the winter.

He does not usually stain and glue in the summer but he cuts wood. One

article I read said dust can cause it …..he makes dust! I just had an

episode from thanksgiving to now that was so severe I started to google

about dry eyes again. I also get mailings from an eye digest. They said

there was a few new products out. I had tried Soothe before but all it did

was make my vision bleary. Soothe XP was supposto be new and improved. I

also began cleaning my eyes again (more about that later). There are glands

called Melobian (sp) which I was told to never mind about that! Anyway after

the washing and hot compresses I massage upper and lower eye lids. I use

Soonthe XP only at night when I flood the eye (usually 3 drops). . If I get

up during the night I put more in. One of the things I read was not to stay

in bed past 8 hours because your eyes dry out more when the eyes are closed

(never imagined this to be true after all air on my eyes is horrible). Hubby

has not done any staining in the past 2 weeks and when he painted my kitchen

today my eyes got dry and my throat sounded hoarse. Except for this my eyes

have been so good.

I am sending you the dry eye bulletin I usually get once a week. Some really

good things there.

If you google dry eyes there are lots of web sites that tell you about

washing your eyes every morning and during the day and at night. Basically

(short version).Wash with Baby tear free shampoo or you can get pads

already soaked with tear free soap. I have both so if I am tired I just use

the pads. There are bottles of special eye soap but baby shampoo works just

as good. Wash inner lids and outer skin. Rinse well. Use wash cloth with

the hottest water you can stand and hold it to your eyes(a compress) as long

as you can. Massage upper and lower lid. Do at least 2 times aday or more if

you have time. The hot compress will get rid of any secretions that are

plugging the tear glands.

I will be glad to answer any questions. I hope this helps. I am so sorry for

you to be going thru this.

Hugs and love.

Cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of DEBBIE GIBSON

Sent: Wednesday, February 24, 2010 2:40 PM

support group

Subject: rheumatic ?s re Sjogrens, Dry mouth, dry eyes

Hey everyone...just wanted to get some input..I am having issues with my dry

eyes, dry mouth, Eye Dr DX it as Sjogrens...so along with my Scleroderam and

RA...and the lung issue (presently in rememission) the OB...I now have

constantly watering eyes...Drs. have prescribed Restasis and numerous eye

drops...and the local rheumy has prescribed Imuran and Plaquenil...Many of

you know me, I was on minocin for several years...and did quite well, early

on..then I had a reaction...either to the minocin or from the RA...I

developed Obliterative Bronchiolitis...OB and DR. Whitman, my long time

rheumy took me off the minocin...so any suggestions out there? What has

worked for you? I think Cooky mentioned something last week...any thoughts

are appreciated...Thanks much, Debbie in Cincinnati

[Guest guest]

Hello Cooky,

How long do you keep the hot compresses on and how do you keep them hot?

how long is the massage and how much strength do you use?

I have been on restasis for two years; I agree, there must be an infection that

causes all this dryness but how do you convince a doctor to start testing. My

eye doc cultured the left eye, found staph epidermis and said that that is just

contamination.

thanks,

EMAILING FOR THE GREATER GOOD

Join me

rheumatic

From: cookee1@...

Date: Wed, 24 Feb 2010 17:14:00 -0500

Subject: RE: rheumatic ?s re Sjogrens, Dry mouth, dry eyes

Hi Deb,

I have had dry eyes(not mouth)for many years. I personally don’t think I

have sjogrens because NO eye drop has given me relief. I used everything

from antinflammatory drops or allergy drops to thick drops. I think I have

some kind of infection in my sinuses and that is causing my burning of the

lids and eyes. I think it is a myco and just have not been on the drug long

enough that can stop the mycos from having babies. I am going to talk to my

ENT next week.

As for sjogrens I think it is caused by a myco also. Some people have

lessening of their symptoms on Minocin….others do not. I did have the same

problems with watering about 9 yrs ago. I had a great opthamologist who put

in punctual plugs in. They are sooo tiny. But they eventually fell out. The

doc quit and I had to go to another who had a tech put them in. One of them

scratched my eye all weekend… when I was finally seen by the tech she said

my eye did not tolerate the plastic (not her fault of course) and doc wanted

dissolvable plugs put in. She put in the collagen plugs and I never went

back. Last year I went to another ophthalmologist who put 1 plug in to see

if I really needed the plugs (Huh). I waited in his office 1 ½ hrs to see

him. I did not go back and took out the plug myself.

My eyes are now very dry. More so in the winter and some in the summer. I

think the chemicals hubby uses in his wood workings causes it in the winter.

He does not usually stain and glue in the summer but he cuts wood. One

article I read said dust can cause it …..he makes dust! I just had an

episode from thanksgiving to now that was so severe I started to google

about dry eyes again. I also get mailings from an eye digest. They said

there was a few new products out. I had tried Soothe before but all it did

was make my vision bleary. Soothe XP was supposto be new and improved. I

also began cleaning my eyes again (more about that later). There are glands

called Melobian (sp) which I was told to never mind about that! Anyway after

the washing and hot compresses I massage upper and lower eye lids. I use

Soonthe XP only at night when I flood the eye (usually 3 drops). . If I get

up during the night I put more in. One of the things I read was not to stay

in bed past 8 hours because your eyes dry out more when the eyes are closed

(never imagined this to be true after all air on my eyes is horrible). Hubby

has not done any staining in the past 2 weeks and when he painted my kitchen

today my eyes got dry and my throat sounded hoarse. Except for this my eyes

have been so good.

I am sending you the dry eye bulletin I usually get once a week. Some really

good things there.

If you google dry eyes there are lots of web sites that tell you about

washing your eyes every morning and during the day and at night. Basically

(short version).Wash with Baby tear free shampoo or you can get pads

already soaked with tear free soap. I have both so if I am tired I just use

the pads. There are bottles of special eye soap but baby shampoo works just

as good. Wash inner lids and outer skin. Rinse well. Use wash cloth with

the hottest water you can stand and hold it to your eyes(a compress) as long

as you can. Massage upper and lower lid. Do at least 2 times aday or more if

you have time. The hot compress will get rid of any secretions that are

plugging the tear glands.

I will be glad to answer any questions. I hope this helps. I am so sorry for

you to be going thru this.

Hugs and love.

Cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of DEBBIE GIBSON

Sent: Wednesday, February 24, 2010 2:40 PM

support group

Subject: rheumatic ?s re Sjogrens, Dry mouth, dry eyes

Hey everyone...just wanted to get some input..I am having issues with my dry

eyes, dry mouth, Eye Dr DX it as Sjogrens...so along with my Scleroderam and

RA...and the lung issue (presently in rememission) the OB...I now have

constantly watering eyes...Drs. have prescribed Restasis and numerous eye

drops...and the local rheumy has prescribed Imuran and Plaquenil...Many of

you know me, I was on minocin for several years...and did quite well, early

on..then I had a reaction...either to the minocin or from the RA...I

developed Obliterative Bronchiolitis...OB and DR. Whitman, my long time

rheumy took me off the minocin...so any suggestions out there? What has

worked for you? I think Cooky mentioned something last week...any thoughts

are appreciated...Thanks much, Debbie in Cincinnati

[Guest guest]

Ah ha! that is the million dollar question~! I just keep trying out

doctors and eventually one is going to help me.

I only keep the compresses on about 2 minutes. Should be more but I get

tired (little grin). I just massage back and forth one or 2 times.

Has restasis helped?

Yeah staph is a bacteria that is on everyone certain types are worse than

others. I am going to ENT (ear nose and throat) doctor Monday. I have had a

tube in my ear for about 8 years. I can tell when it falls out because I

can't hear. I can't drain fluid from my inner ear after a sinus infection. I

am going to tell him that when I get an infection I use the antibiotic and

my eyes are better till I start a new infection (which can be anywhere from

4 days to 2 weeks). I will let you know how I do.

Hugs.

Cooky

rheumatic ?s re Sjogrens, Dry mouth, dry eyes

Hey everyone...just wanted to get some input..I am having issues with my dry

eyes, dry mouth, Eye Dr DX it as Sjogrens...so along with my Scleroderam and

RA...and the lung issue (presently in rememission) the OB...I now have

constantly watering eyes...Drs. have prescribed Restasis and numerous eye

drops...and the local rheumy has prescribed Imuran and Plaquenil...Many of

you know me, I was on minocin for several years...and did quite well, early

on..then I had a reaction...either to the minocin or from the RA...I

developed Obliterative Bronchiolitis...OB and DR. Whitman, my long time

rheumy took me off the minocin...so any suggestions out there? What has

worked for you? I think Cooky mentioned something last week...any thoughts

are appreciated...Thanks much, Debbie in Cincinnati

[Guest guest]

Cooky,

dr. Mirkin has a very informative site that you can search for answers,

www.drmirkin.com

his advise for infections of the nose is triple antibiotic ointment in the

nostrils every night for a month.

I started using q-tips with tea tree oil in the ears and nose and it looks like

it's doing something because the lining of the ears is pealing off.

good luck,

EMAILING FOR THE GREATER GOOD

Join me

rheumatic

From: cookee1@...

Date: Wed, 24 Feb 2010 18:05:56 -0500

Subject: RE: rheumatic ?s re Sjogrens, Dry mouth, dry eyes

Ah ha! that is the million dollar question~! I just keep trying out

doctors and eventually one is going to help me.

I only keep the compresses on about 2 minutes. Should be more but I get

tired (little grin). I just massage back and forth one or 2 times.

Has restasis helped?

Yeah staph is a bacteria that is on everyone certain types are worse than

others. I am going to ENT (ear nose and throat) doctor Monday. I have had a

tube in my ear for about 8 years. I can tell when it falls out because I

can't hear. I can't drain fluid from my inner ear after a sinus infection. I

am going to tell him that when I get an infection I use the antibiotic and

my eyes are better till I start a new infection (which can be anywhere from

4 days to 2 weeks). I will let you know how I do.

Hugs.

Cooky

rheumatic ?s re Sjogrens, Dry mouth, dry eyes

Hey everyone...just wanted to get some input..I am having issues with my dry

eyes, dry mouth, Eye Dr DX it as Sjogrens...so along with my Scleroderam and

RA...and the lung issue (presently in rememission) the OB...I now have

constantly watering eyes...Drs. have prescribed Restasis and numerous eye

drops...and the local rheumy has prescribed Imuran and Plaquenil...Many of

you know me, I was on minocin for several years...and did quite well, early

on..then I had a reaction...either to the minocin or from the RA...I

developed Obliterative Bronchiolitis...OB and DR. Whitman, my long time

rheumy took me off the minocin...so any suggestions out there? What has

worked for you? I think Cooky mentioned something last week...any thoughts

are appreciated...Thanks much, Debbie in Cincinnati

[Guest guest]

Hello Debbie. We have not talked in a while. My wife saw Dr. W back in September

upon yours, Ethel's and 's recommendations. He kept her on the Mino and the

Azith but started her on them every day instead of every other day at first. He

wants to wean her off the mino as he says that it is not as affective as the

azith for polymyocitis and MCTD. So, we are back down to three days a week and

soon to go to two. He has also weaned her off of the Imuran (much to her regular

rheumy's dislike) and that leaves her just on Plaquenil. That too will start

being withdrawn slowly. We are also lowering the prednisone to " hopefully "

around 5 or 10 mg. She's at 30 now, down from 40. As you can see we are taking

it all very slowly. But so far so good and she has been doing wonderfully. So

much for the update. My question is were you on only the mino? Does Dr. W.

recommend trying another type of antibiotic? My wife has Sjogrens also but only

minimally affected with any drying. She has had a significant problem with yeast

and mouth sores, both, attributable to the mino. So hopefully with that gone so

will these problems. Good to hear from you.

Rick

rheumatic ?s re Sjogrens, Dry mouth, dry eyes

Hey everyone...just wanted to get some input..I am having issues with my dry

eyes, dry mouth, Eye Dr DX it as Sjogrens...so along with my Scleroderam and

RA...and the lung issue (presently in rememission) the OB...I now have

constantly watering eyes...Drs. have prescribed Restasis and numerous eye

drops...and the local rheumy has prescribed Imuran and Plaquenil...Many of you

know me, I was on minocin for several years...and did quite well, early on..then

I had a reaction...either to the minocin or from the RA...I developed

Obliterative Bronchiolitis...OB and DR. Whitman, my long time rheumy took me off

the minocin...so any suggestions out there? What has worked for you? I think

Cooky mentioned something last week...any thoughts are appreciated...Thanks

much, Debbie in Cincinnati

[Guest guest]

HI Rick....I am planning on seeing DR W soon....missed last year, hubby lost his

job, so things are tight, but we need to make a trip his way...

I am going to ask DR W about me going on Zmax...I did quite well on the mino but

had a reaction after 3 yrs...and he refuses to allow me to take it again...it

has been known to cause OB, Obliterative Bronchiolitis..and once I was dx with

that...well, he took me off...and rightly so...I was not happy as it had kept my

disease at bay...I did quite well on it...ah well...until that OB reared its

ugly head...

My local rheumy wants me on Plaq and Imuran...but I will wait until I hear what

Dr W has to say...I only see him once a year but he is sooo worth it...I am so

happy that your wife is doing well...DR. W is amazing...truly I think the best

in his field...

Keep me posted....Debbie

rheumatic ?s re Sjogrens, Dry mouth, dry eyes

Hey everyone...just wanted to get some input..I am having issues with my dry

eyes, dry mouth, Eye Dr DX it as Sjogrens...so along with my Scleroderam and

RA...and the lung issue (presently in rememission) the OB...I now have

constantly watering eyes...Drs. have prescribed Restasis and numerous eye

drops...and the local rheumy has prescribed Imuran and Plaquenil...Many of you

know me, I was on minocin for several years...and did quite well, early on..then

I had a reaction...either to the minocin or from the RA...I developed

Obliterative Bronchiolitis...OB and DR. Whitman, my long time rheumy took me off

the minocin...so any suggestions out there? What has worked for you? I think

Cooky mentioned something last week...any thoughts are appreciated...Thanks

much, Debbie in Cincinnati

[Guest guest]

Hey Cooky, thanks for all the info...boy, we do have to battle these

diseases...all the time...I cannot afford the Restasis either and was not so

thrilled to use that ....so I am waiting on the Soothe samples and coupons in

the mail still...Did you end up calling them?

Debbie

rheumatic ?s re Sjogrens, Dry mouth, dry eyes

Hey everyone...just wanted to get some input..I am having issues with my dry

eyes, dry mouth, Eye Dr DX it as Sjogrens...so along with my Scleroderam and

RA...and the lung issue (presently in rememission) the OB...I now have

constantly watering eyes...Drs. have prescribed Restasis and numerous eye

drops...and the local rheumy has prescribed Imuran and Plaquenil...Many of

you know me, I was on minocin for several years...and did quite well, early

on..then I had a reaction...either to the minocin or from the RA...I

developed Obliterative Bronchiolitis...OB and DR. Whitman, my long time

rheumy took me off the minocin...so any suggestions out there? What has

worked for you? I think Cooky mentioned something last week...any thoughts

are appreciated...Thanks much, Debbie in Cincinnati

[Guest guest]

Glad to hear you are well. Our year won't be up until September so we are

hoping all goes well and that phone exchange will be all that is necessary. Take

care.

Rick

rheumatic ?s re Sjogrens, Dry mouth, dry eyes

Hey everyone...just wanted to get some input..I am having issues with my dry

eyes, dry mouth, Eye Dr DX it as Sjogrens...so along with my Scleroderam and

RA...and the lung issue (presently in rememission) the OB...I now have

constantly watering eyes...Drs. have prescribed Restasis and numerous eye

drops...and the local rheumy has prescribed Imuran and Plaquenil...Many of you

know me, I was on minocin for several years...and did quite well, early on..then

I had a reaction...either to the minocin or from the RA...I developed

Obliterative Bronchiolitis...OB and DR. Whitman, my long time rheumy took me off

the minocin...so any suggestions out there? What has worked for you? I think

Cooky mentioned something last week...any thoughts are appreciated...Thanks

much, Debbie in Cincinnati