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Sjogrens/Colleen

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Dear Colleen,

You may not be on immune suppressants like Imuran or Prednisone, but you are on Plaquenil. That is used to reduce inflammatory illnesses which Sjogren's is. I was on it for awhile but it did nothing for me. Its the lowest risk drug. However it is associated with eye problems. Did they tell you that? Long term it can cause you to loose colour vision. This is correctable when you stop taking the medication. You have to be one it for about 10 years before its a major problem but you are supposed to have your eyes tested yearly while you are on Plaquenil. Also if you have any changes in your vision you are supposed to get your eyes tested and talk to your doctor. From what you said it sounds like you are already having vision problems. I can understand them not wanting you on a more severe medication like Imuran/Prednisone but if you already having eye trouble then it seems a strange choice of med to me. I would have thought prednisone would have been the first thing they tried you on. I'm not an expert on Sjogren's, but I do know that the majority of treatments are the same as sarcoidosis, so I'm very surprised you are not on prednisone.

"Doxycycline 100mg bid ( supposed to liquify the oils the glands around the eye put out)"

I thought this was an antibiotic?

"Cyclosporine A 1% eye ointment use it 2-3 times a day"

Cyclosporine A (in tablet form) is an immune supressant like Imuran. Perhaps this is why they are giving it to you direct into your eyes?

It kinda makes sense - treat the inflamation with the Plaquenil, and give your eyes the stronger med with the Cyclosporine. But the big thing is - are you feeling better on it and are they running follow up tests to make sure everything is ok?

"They wont put me on any steriods or immunosuppressive drugs because vital organs are not attacked. I guess I should not want to be on any more, but to me EYES are a vital organ. I wear dark glasses now inside and out. Everyone seems to be getting used to it and it keeps me from squinting and getting major headaches."

Well I'd talk to them about switching the plaquenil with prednisone if you are not feeling better.

"I am seeing some subtle slow changes."

For better or worse?

"My life is totally gone right now though."

*gentle hugs*

Love Aisha

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