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debbie-b
03-22-2012, 09:55 AM
I have looked at the older sjogrens posts, but couldn't find what I was looking for.
Since I was just diagnosed with secondary sjogrens, I have a few questions and maybe these questions and answers, can help other sufferers too.
I just got out of the shower and looked in the mirror and discovered, that I have a burst bloodvessel in my left eye. Is that normal? It is not red, like when you have red eyes, I can see the blood vessel and it seems like it is bleeding.
I have always had mouth sores with the lupus, but now I have a sore on the inside cheek, as long as half of my little finger. It really hurts. Is that normal?

Debbie

steve.b
03-22-2012, 08:53 PM
sorry i can not help.....

but i know who can.

marla is a member of a sjogrens site.
she regularly comments on how good it is.

magistramarla
03-24-2012, 03:53 PM
Hi Debbie,
I'm sorry that I've just now seen this - computer problems!
Are you being treated for the dry eyes that SJS causes? I used to get burst blood vessels in my eyes often when I was teaching, and I really didn't know why. Since I've been using Restasis, I haven't had a red-eye problem or a burst blood vessel at all.
Has your rheumy sent you to an ophthalmologist? He/she can do a Schirmer's test and determine how dry your eyes are, and then go from there.

I know that I've mentioned this in other posts, but my eye doc told me to ignore the instructions on the Restasis about using each vial only once. He said that it was safe to pop the top back on and re-use it as long as I kept it clean and cool. Restasis is expensive, even with insurance, so this really helps.
I also take Pilocarpine, which helps me to make saliva. It really is helpful too!

Here's the link to the Sjogren's Foundation: http://www.sjogrens.org/ It's really helpful.
There is a support group site, too. I just lurk there for information, since they aren't the "cyber family" that WHL is!
Hugs,
Marla

debbie-b
03-24-2012, 05:49 PM
Hi Debbie,
I'm sorry that I've just now seen this - computer problems!
Are you being treated for the dry eyes that SJS causes? I used to get burst blood vessels in my eyes often when I was teaching, and I really didn't know why. Since I've been using Restasis, I haven't had a red-eye problem or a burst blood vessel at all.
Has your rheumy sent you to an ophthalmologist? He/she can do a Schirmer's test and determine how dry your eyes are, and then go from there.

I know that I've mentioned this in other posts, but my eye doc told me to ignore the instructions on the Restasis about using each vial only once. He said that it was safe to pop the top back on and re-use it as long as I kept it clean and cool. Restasis is expensive, even with insurance, so this really helps.
I also take Pilocarpine, which helps me to make saliva. It really is helpful too!

Here's the link to the Sjogren's Foundation: http://www.sjogrens.org/ It's really helpful.
There is a support group site, too. I just lurk there for information, since they aren't the "cyber family" that WHL is!
Hugs,
Marla

Thank you Marla,

I knew you would answer me, when you can.
Well, my rheumy said, it is def sjogrens, just from the blood test. He told me to try OTC drops and mouthwash first, if that doesn't help, he will give me a prescription. Do you know, if he can prescripe the eyedrops as well?
I have to go to the eye doctor soon anyway, it has almost been a year.
I have peeked into the sjorgrens support group a few times.
My eye still looks pretty bad, it is probably from the dryness.
I was shocked, when I read that sjorgrens can also attack your organs. What lupus isn't bad enough?

Debbie

magistramarla
03-29-2012, 02:34 PM
Hi Debbie,
I'm finally back, with a brand new router. I hope that it makes my computer connection more reliable.
My eye doc recommended Systane for my OTC eyedrops. I use them between the Restasis doses.

Isn't it a shock to read what Sjogren's can do? I attended a Sjogren's conference, and it was eye-opening to see lots of others who walk and talk like me. The doctors who spoke that weekend talked about the systemic problems that it can cause - we listened to neurologists, cardiologists, pulmonologists and of course ENTs and ophthalmologists. That's why I got so angry at the neuro that I saw when he stated that Sjogren's is "only dry eyes and mouth and is easily treatable".
It's amazing how much all of our AI diseases overlap and mimic each other. That's why I keep saying that they are all on an AI spectrum.
Hugs,
Marla

debbie-b
03-29-2012, 02:56 PM
You know what? I was thinking the same thing, that it only causes dry eyes and dry mouth, but I am not a doctor. The neuro should have known better.
Another thing, do you get real dry sinuses, mine are so dry, that they burn.
Thank you for your answer, I am going to try Systane.

Debbie

magistramarla
03-29-2012, 03:09 PM
Debbie,
Yes! I used to have LOTS of problems with dry sinuses. Now we live next to the ocean, and my sinus problems went away. When we visited Reno and Lake Tahoe last summer, I noticed that my dry sinuses came back with a vengeance. We then drove to San Francisco, and I noticed that the closer we got to the ocean, the better I felt. This is why I dread moving back to Texas.
I've seen this discussed on the Sjogren's site, too. Many people seem to find that investing in a really high quality humidifier is worth it. I guess that is what we'll have to do when we move back to our house.
Hugs,
Marla

debbie-b
03-29-2012, 03:15 PM
A humidifier for me is a catch 22, it may help my sinuses, but it will my asthma act up. Humid air makes me cough and gives me breathing problems.
Lupus, RA, Sjogrens, Fibro and Asthma, I need to stop yelling ME, when they are giving out illnesses. UGH.
I have had enough already, enough I say.

Debbie

magistramarla
03-29-2012, 03:25 PM
Debbie,
Yes, I know what you mean - Lupus, Sjogren's, RA, Psoriatic Arthritis, Raynaud's, Meniere's, Spasmodic Dysphonia, and now one doc thinks that I could also have Spastic Paraplegia (related to the SD, but a dystonia in my leg muscles). I agree with you - Enough Already!
I think that you need to take a nice long vacation next to the ocean to see if it helps you as much as it did for me. The only time that my sinuses and allergies act up here is just before a storm comes in off of the ocean. The rest of the time, that salt air is wonderful for me.
Hugs,
Marla

SleepyInSeattle
03-29-2012, 05:13 PM
I also have Lupus and Sjogren's (I had never heard of it until my bloodwork came back...I also got the "2-for-1" deal), as well as APS, migraines, and Raynaud's....I am not even sure I want them to investigate anything else, LOL....don't want to push my luck....

ANYHOO - I guess the "good news" is that the same drugs that work on Lupus also tend to work on Sjogren's, so you're kinda killing two birds with one pill, so to speak.

I have read here and there that Plaquenil can take longer to affect Sjogren's than Lupus, so there's that to consider....apparently things can continue to improve after 6 months or even a year, depending on which symptom is being caused by what. Not that it really matters, I guess...but at least it's something HOPEFUL, right?

Best of luck and I hope your doc can help you find things that make you feel better....

wowthird
03-29-2012, 06:38 PM
Here's a Sjogren's site I found that has lots of information. http://sjogrensworld.org/forums/index.php?PHPSESSID=c2312aa7038396dff5bfcdcac90114 a9&board=1.0

magistramarla
03-30-2012, 11:23 AM
Here's a Sjogren's site I found that has lots of information. http://sjogrensworld.org/forums/index.php?PHPSESSID=c2312aa7038396dff5bfcdcac90114 a9&board=1.0

Yes, I lurk at that message board for information all of the time. They just aren't the "cyber family" that WHL is.
That site has some great articles on the neurological symptoms of Sjogren's.
Hugs,
Marla

Corella
04-05-2012, 04:30 PM
I dont have Lupus (although the rash I get would suggest it), but I have Sjogrens and I cannot emphasise strongly enough to ask your GP to refer you to an eye specialist. It was my eye specialist that got me diagnosed with Sjogrens, I had a weak positive in the blood test but the eye doctor wrote to my rheumy and told him, this was backed up by my dentist.

Your eyes can suffer greatly with Sjogrens and you need this managing by the right person, my eyes get tested twice a year by my optician and once a year by the eye specialist. The dry eye itself can cause massive issues and you need the right eye drops which will come recommended by the eye specialist.

Do not be afraid to ask for this referral, my eyes have deteriorated hugely in 6 months, I now have punctal plugs and my vision is quite blurred and I am pleased I am under the right man for the job.

Get some over the counter drops by all means but dont underestimate what Sjogrens can do to the eyes - insist on a referral.

Also, I would strongly advise you seeing a dentist every 3 months, floss and brush your teeth within 30 minutes of eating, cut sugar out from your diet and use a flouride rinse twice a day plus an enzyme rinse in between because you may find the enamel on your teeth disappears quicker than cakes at a childrens party.

But please, get that referral for your eyes - and quickly.

debbie-b
04-06-2012, 03:07 PM
Hi Corella,

I am due for my yearly visit to the eye specialist. Luckely, I don't need a referral, I will make an appointment, promise.
Thank you for caring.

Debbie