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Sjogren's Syndrome Support Group
A community of patients, family members and friends dedicated to dealing with Sjogren's Syndrome, together.
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02/22/2011 09:22 AM
cricket183
 
Posts: 10
Member

I was diagnosed with Sjogren's Syndrome about 2 years ago. I was originally referred to a rhuematologist to see if I had fibromyalgia. The fibro was ruled out but I was found to have Sjogren's Syndrome and Palindromic Rheumatism (a form of RA that has all the symptoms of RA without the joint damage. Unfortunately 40% of cases of PR turn into full blown RA.) I also have RSD/CRPS and CFS. As far as Sjogrens goes, the symptom that gives me the most trouble by far is the dry eyes. I am currently on Restasis and Fresh Kote eye drops twice a day. I have discussed plus with my eye doc and that is the next step we will take if the drops do not work. I have had several infections of my right parotid gland. I also have a lot of joint pain especially to my hands, hips, and knees. I recently underwent a series of 3 injections Synvisc in both knees. It helped with the pain and stiffness. Unfortunately, the pain of my RSD/CRPS often overshadows my joint pain and I tend to put it on the shelf and ignore it.

I am 43, married to my high school sweetheart for almost 23 yrs. We have two boys, 21 and 20. I am a Registered Nurse on full disability due to the RSD/CRPS since March 2008. I worked in Oncology and desperately miss working with cancer patients. It was more than just a job, it was truly a calling in y life.

I look forward to getting to know everyone.

Cricket

RSD/CRPS, Sjogren's Syndrome, Palindromic Rheumatism, Chronic Fatigue Syndrome,
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02/22/2011 03:09 PM  Top
twistedDNA
twistedDNA
 
Posts: 1110
Group Leader

Welcome Criket,

I too have problems with my eyes being to dry and have to use antibiotics in them on a daily basis. Going to see a new rheumy soon and maybe he can help. My eye doc said he would treat it no different then dry eye, so I'm looking for a new eye doc.

I also have problems with my parotid gland and couldn't tell you whether its been infected or not but it gives me LOTS of pain that 99% of the time leads to a huge migraine.

I read about an occipital nerve block and I'm going to ask the rheumy about it.

Can you tell me more details about your eye dryness and parotid problems?

I am not a doctor and my advice is purely my opinion which should be regarded as such!

02/23/2011 05:55 AM  Top
Tzippy
Tzippy
 
Posts: 75
Member

I worry about using antibiotics for dry eye. We have so much mis use of them, we are getting more and more of the bacteria that are resistant to treatment.

I would see what the Rheum or eye doc says.

I am still looking for a good eye doc, since the last one was a bust.

Mary

Mary

May you choose to see beyond life's storms, to uncover the blessings that the rain brings, and during all of life's twists and turns, may you always choose.
--Michelle Sedas

Previous discussions I participated in:
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EVERYONE!
Hydroxychloroquine

02/27/2011 02:37 PM  Top
twistedDNA
twistedDNA
 
Posts: 1110
Group Leader

Went in to see a new eye doc as I have a bad infection in my left eye. When I called I asked if this doc knew anything about Sjogren's and the answer was yes!

When she looked at my eyes she said I had a couple of things going on but wants to just focus on the eye infection for now. She wrote me a script for Vigamox. I go back next Friday for a follow up. So far my eye hasn't gotten much better and actually became worse on Friday night. My jaw and sinus's were painful to. My nose is starting to bleed again as well, had that controlled by saline spray but something else is going on, maybe the moisture gland is infected I don't know. The migraine is causing me troubles every day so I haven't been doing much but staying in bed.

I told the doc about having to use the antibiotics everyday and she said that she could probably help me but didn't get into the next treatment plan once this infection clears up. My eye is totally red and puffy, very sore.

I am not a doctor and my advice is purely my opinion which should be regarded as such!

02/28/2011 07:37 PM  Top
cricket183
 
Posts: 10
Member

Thank you for the welcome. I am sorry it took me so long to get back to you. I first noticed the problems with my eyes when I started having difficulty wearing my contacts. Come to find out I had an ulceration in my right eye due to the dryness and rubbing of the contact against the cornea. I also had several corneal abrasions on my left eye. I had to stop wearing contacts and had to go back to glasses. Luckily the abrasions and the ulceration healed with very little scarring. After a round of antibiotics for a month I started on Restasis eye drops. They helped some but not enough so they added the Fresh Kote to it. It helped a little more. We have talked about doing the plugs but my eye doc wants to use that as a last resort. Last month he added an antibiotic drop called Azasite and an eye wash and those helped a lot.

As far as the parotid gland, I have had 2 infections in the right side also. My doc said they were most likely caused by dry mouth and the natural bacterial flora of the mouth. A ten day course of antibiotics cured both. They were extremely painful and the swelling left me looking like a chipmunk on the right side. I started a medication called salagen that has helped with the dry mouth and I also started using Biotene products (toothpaste, mouthwash, and lubricant. They also make a sugar-free gum but because of a previous jaw problem I do not chew gum very often.) Those two things together have helped and I have not had another infection since.

Hope this helps. If you have any other questions eel free to ask me.

Cricket

PS I forgot to mention my eye doc also has me taking an strong Omega 3 fish oil capsule twice a day. He says it has been shown to help improve the production of the natural oils that lubricate the eyes. You might check with your eye doc or rheumy about starting these.

Post edited by: cricket183, at: 03/01/2011 07:00 AM

RSD/CRPS, Sjogren's Syndrome, Palindromic Rheumatism, Chronic Fatigue Syndrome,

Previous discussions I participated in:
Direct IV Ozone Therapy
Questions about SCS removal
IVIG
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