Comments on: What is Sjogren’s Syndrome? http://rawarrior.com/what-is-sjogrens-syndrome/ Bringing information & encouragement to fight RA Thu, 24 May 2012 14:37:00 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Trish http://rawarrior.com/what-is-sjogrens-syndrome/comment-page-1/?show=comments-212242 Trish Tue, 08 May 2012 19:20:58 +0000 http://rawarrior.com/what-is-sjogrens-syndrome/#comment-212242 In my house Sjogren's Syndrome equals 4 bags a week of cinnamon discs. I have one sitting in my mouth day and night. I've mastered the art of sticking it between my cheek and teeth if I have to talk. LOL Warning: try not to fall asleep with one in your mouth because you might accidentally swallow it, which is pretty impossible to do, so you wake up coughing and gagging until you can bring it back up. Not fun. But the good news is, I don't have cotton mouth and my breath is always cinnaminty fresh! In my house Sjogren’s Syndrome equals 4 bags a week of cinnamon discs. I have one sitting in my mouth day and night. I’ve mastered the art of sticking it between my cheek and teeth if I have to talk. LOL Warning: try not to fall asleep with one in your mouth because you might accidentally swallow it, which is pretty impossible to do, so you wake up coughing and gagging until you can bring it back up. Not fun. But the good news is, I don’t have cotton mouth and my breath is always cinnaminty fresh!

]]> By: Mr. C. http://rawarrior.com/what-is-sjogrens-syndrome/comment-page-1/?show=comments-198637 Mr. C. Wed, 04 Apr 2012 14:31:50 +0000 http://rawarrior.com/what-is-sjogrens-syndrome/#comment-198637 I was given a drug called Pilocarpine hcl 5mg by my RD for my horrible dry mouth. I take one in morning and one in the evening but can take up to 4 per day. It has done wonders, my wife will actual come near me again because my breathe isn't down right horrendous all the time. My eyes are always red and a little dry, way to dry for contacts so I now wear my glasses all the time (I hate wearing my glasses but can't see much of anything otherwise) I was given a drug called Pilocarpine hcl 5mg by my RD for my horrible dry mouth. I take one in morning and one in the evening but can take up to 4 per day. It has done wonders, my wife will actual come near me again because my breathe isn’t down right horrendous all the time. My eyes are always red and a little dry, way to dry for contacts so I now wear my glasses all the time (I hate wearing my glasses but can’t see much of anything otherwise)

]]> By: Mary Baney http://rawarrior.com/what-is-sjogrens-syndrome/comment-page-1/?show=comments-198615 Mary Baney Wed, 04 Apr 2012 13:28:00 +0000 http://rawarrior.com/what-is-sjogrens-syndrome/#comment-198615 I have RA and secondary Sjogrens. In addition to all of the RA meds, I use Restatis for the eye dryness, which works to a point but not when my allergies are bad. There's really nothing for the dry sinuses but I use a steroid spray for my allergies. My real problem is my mouth. It is so dry that every tooth has decayed and is either filled or crowned. Now, the teeth that are not crowned (in the front) have had the enamel wear away. My dentist has tried coating the teeth but I now have two-toned teeth and have stopped smiling. If anyone has had this and/or has any ideas for me, I would appreciate hearing from you. Thanks. I have RA and secondary Sjogrens. In addition to all of the RA meds, I use Restatis for the eye dryness, which works to a point but not when my allergies are bad. There’s really nothing for the dry sinuses but I use a steroid spray for my allergies. My real problem is my mouth. It is so dry that every tooth has decayed and is either filled or crowned. Now, the teeth that are not crowned (in the front) have had the enamel wear away. My dentist has tried coating the teeth but I now have two-toned teeth and have stopped smiling. If anyone has had this and/or has any ideas for me, I would appreciate hearing from you. Thanks.

]]> By: Belinda Langley RN http://rawarrior.com/what-is-sjogrens-syndrome/comment-page-1/?show=comments-98013 Belinda Langley RN Thu, 06 Oct 2011 16:10:54 +0000 http://rawarrior.com/what-is-sjogrens-syndrome/#comment-98013 I had been diagnosed 6 months before seeing a rheumatologist. He ordered so many labs that the specimens filled 17 multicolored vacutainers. When I received the results, the rheumatologist had the saddest look on his face; confirmed the RA with elevated titers, sed rate, anti CPP, and then he mentioned complement testing. I was already overwhelmed, though partially relieved, and now a bit optimistic, because this guy knew his stuff. He told me that I had an aggressive form of RA and indications that it will progress, and that I also had Sjogren's syndrome. I didn't pay much attention to that diagnosis. I had no problem crying a pool of tears, so the Sjogren's must be so mild... About 3 years after diagnosis, I experienced vasculitis in my leg. It was incredibly painful, with the entire leg swollen to 3 x the norm, and loss of the distal pulses. The pain I could only describe as "acid in my veins". My daughter was getting married in 2 weeks. This could not happen! I made it to the wedding, thankfully. It was thought that the Sjogren's was responsible for that. Still able to cry a puddle. A few months ago, I was trying to work on my vacant house to prepare for sale. When I went to bed, I had the most incredible pain that shot through my lip, cheek, and into the floor of my eye. I immediately thought it must be a bad tooth, but I have never experienced a toothache in my life, I just assumed, and sped off into the night in search of a 24 hour store to buy every preparation I could for toothache. Immediately squirted the oragel all over the teeth on that side of my mouth, and got minimal relief. Took some analgesic that I had squirelled away from the vasculitis and went to bed. It's not a bad tooth. The pain is in my cheeks (deep ache) sometimes causing a pretty bad headache. My mouth looks like a leper, with bare and sore areas that extend to the base of my tongue making it difficult to eat. I usually immediately brush my teeth and sometimes get almost immediate 75% reduction in pain. I've noticed that I've always been pretty conscious of my salivary glands, even as a kid, this was seeming more familiar, but it's just such a weird thing, that I never thought it meant anything. I've also had episodes where my blood pressure was extremely high, the blood vessels dilated on just one side of my body, the familiar "acid burn" in my veins, feeling of heat and then some loss of peripheral vision that never came back after that. In general, my eyesight is probably about 25% worse over the past year. The thing that puzzles me, and I'm not being poetic here. I seriously have no problem crying and when I cry, the tears are just massive. I now have to sleep with a piece of gum in my mouth, because otherwise, I am awakened with intense facial nerve pain. I have always been a kind of "dry" person. My skin has always been "supple", but my eyes have always burned, I have never had sweat run off my body and have always led an active, outdoorsy life. To this point, the Sjogren's has been manageable, and by paying attention to the symptoms, I am waiting for my next appointment, to discuss this further. I had been diagnosed 6 months before seeing a rheumatologist. He ordered so many labs that the specimens filled 17 multicolored vacutainers. When I received the results, the rheumatologist had the saddest look on his face; confirmed the RA with elevated titers, sed rate, anti CPP, and then he mentioned complement testing. I was already overwhelmed, though partially relieved, and now a bit optimistic, because this guy knew his stuff. He told me that I had an aggressive form of RA and indications that it will progress, and that I also had Sjogren’s syndrome. I didn’t pay much attention to that diagnosis. I had no problem crying a pool of tears, so the Sjogren’s must be so mild… About 3 years after diagnosis, I experienced vasculitis in my leg. It was incredibly painful, with the entire leg swollen to 3 x the norm, and loss of the distal pulses. The pain I could only describe as “acid in my veins”. My daughter was getting married in 2 weeks. This could not happen! I made it to the wedding, thankfully. It was thought that the Sjogren’s was responsible for that. Still able to cry a puddle. A few months ago, I was trying to work on my vacant house to prepare for sale. When I went to bed, I had the most incredible pain that shot through my lip, cheek, and into the floor of my eye. I immediately thought it must be a bad tooth, but I have never experienced a toothache in my life, I just assumed, and sped off into the night in search of a 24 hour store to buy every preparation I could for toothache. Immediately squirted the oragel all over the teeth on that side of my mouth, and got minimal relief. Took some analgesic that I had squirelled away from the vasculitis and went to bed. It’s not a bad tooth. The pain is in my cheeks (deep ache) sometimes causing a pretty bad headache. My mouth looks like a leper, with bare and sore areas that extend to the base of my tongue making it difficult to eat. I usually immediately brush my teeth and sometimes get almost immediate 75% reduction in pain. I’ve noticed that I’ve always been pretty conscious of my salivary glands, even as a kid, this was seeming more familiar, but it’s just such a weird thing, that I never thought it meant anything. I’ve also had episodes where my blood pressure was extremely high, the blood vessels dilated on just one side of my body, the familiar “acid burn” in my veins, feeling of heat and then some loss of peripheral vision that never came back after that. In general, my eyesight is probably about 25% worse over the past year. The thing that puzzles me, and I’m not being poetic here. I seriously have no problem crying and when I cry, the tears are just massive. I now have to sleep with a piece of gum in my mouth, because otherwise, I am awakened with intense facial nerve pain. I have always been a kind of “dry” person. My skin has always been “supple”, but my eyes have always burned, I have never had sweat run off my body and have always led an active, outdoorsy life. To this point, the Sjogren’s has been manageable, and by paying attention to the symptoms, I am waiting for my next appointment, to discuss this further.

]]> By: Ray http://rawarrior.com/what-is-sjogrens-syndrome/comment-page-1/?show=comments-95510 Ray Wed, 28 Sep 2011 19:23:38 +0000 http://rawarrior.com/what-is-sjogrens-syndrome/#comment-95510 Ok, Today my Rheumatologist told me I was as close to remission as he had seen for a while. I have been pretty much sympton free for about 6 months. I am taking Simponi once a month .6mg injectable mtx once a week 2000mg of fish oil and a few other supplements So why Ray are you posting in this part of the blog... ? Good question, I am glad you asked :) My doctor also told me he was testing for secondary Sjogrens Syndrome. I have been having incredibly dry eyes and mouth for several weeks. I chalked it up to RA and only mentioned it to the Dr in passing as I was leaving. Nope, straight to the lab for more blood work. I guess I will know a bit more in a few days. For now "Refresh" Eyedrops and Biotene spray and gum. So pretty simple treatment all things considered. So remission with new symptoms :) The good news is I am as pain free as I have ever been since my RA diagnosis. So no real complaints, only changes. My best to all of you. Ray Ok, Today my Rheumatologist told me I was as close to remission as he had seen for a while. I have been pretty much sympton free for about 6 months.
I am taking Simponi once a month
.6mg injectable mtx once a week
2000mg of fish oil
and a few other supplements
So why Ray are you posting in this part of the blog… ?
Good question, I am glad you asked :)
My doctor also told me he was testing for secondary Sjogrens Syndrome. I have been having incredibly dry eyes and mouth for several weeks. I chalked it up to RA and only mentioned it to the Dr in passing as I was leaving. Nope, straight to the lab for more blood work. I guess I will know a bit more in a few days. For now “Refresh” Eyedrops and Biotene spray and gum. So pretty simple treatment all things considered.
So remission with new symptoms :)
The good news is I am as pain free as I have ever been since my RA diagnosis. So no real complaints, only changes.
My best to all of you.
Ray

]]> By: Kelly Young http://rawarrior.com/what-is-sjogrens-syndrome/comment-page-1/?show=comments-38175 Kelly Young Mon, 01 Nov 2010 15:30:24 +0000 http://rawarrior.com/what-is-sjogrens-syndrome/#comment-38175 Waynette, there are many secondary diseases to RA. I hope your aggressive treatment helps you from getting them! I hear you! Sometimes, a rheum doc will diagnose the Sjogren's but I had to go to an eye doc to get my diagnosis & treatment (even though it's a rheum disease). We tend to have so many symptoms going on w/ RA that the RA docs are overwhelmed & we need other specialists for secondary conditions to be treated. Probably better treated by specialists anyway. Waynette, there are many secondary diseases to RA. I hope your aggressive treatment helps you from getting them!
I hear you! Sometimes, a rheum doc will diagnose the Sjogren’s but I had to go to an eye doc to get my diagnosis & treatment (even though it’s a rheum disease). We tend to have so many symptoms going on w/ RA that the RA docs are overwhelmed & we need other specialists for secondary conditions to be treated. Probably better treated by specialists anyway.

]]> By: waynette gatlin http://rawarrior.com/what-is-sjogrens-syndrome/comment-page-1/?show=comments-38173 waynette gatlin Mon, 01 Nov 2010 15:26:31 +0000 http://rawarrior.com/what-is-sjogrens-syndrome/#comment-38173 Kelly, I didnt realize that there were secondary diseases to RA. Im like wow when I read this articl because it described everything im going through that I thought were side effects due to the meds. Cotton mouth, vision changes, itchy eyes. I wear sun glasses all the time. Even when its not sunny because it eases the blurryness. Thank you so much! I will now look into the other secondary problems and see if these are the reasons for my other symptoms. Question..Why bother paying all the money for the eye tests if there is no cure and if im already on alot of DMARDS? Kelly, I didnt realize that there were secondary diseases to RA. Im like wow when I read this articl because it described everything im going through that I thought were side effects due to the meds. Cotton mouth, vision changes, itchy eyes. I wear sun glasses all the time. Even when its not sunny because it eases the blurryness. Thank you so much! I will now look into the other secondary problems and see if these are the reasons for my other symptoms. Question..Why bother paying all the money for the eye tests if there is no cure and if im already on alot of DMARDS?

]]> By: Kelly Young http://rawarrior.com/what-is-sjogrens-syndrome/comment-page-1/?show=comments-30699 Kelly Young Wed, 01 Sep 2010 11:55:19 +0000 http://rawarrior.com/what-is-sjogrens-syndrome/#comment-30699 Anita, thanks for the interesting story. One of many reasons we need greater awareness. Should be listed as a "normal" thing to test if one has rheumatoid, right? Should go with the dx of RA like you said. Anita, thanks for the interesting story. One of many reasons we need greater awareness. Should be listed as a “normal” thing to test if one has rheumatoid, right? Should go with the dx of RA like you said.

]]> By: anita http://rawarrior.com/what-is-sjogrens-syndrome/comment-page-1/?show=comments-30661 anita Wed, 01 Sep 2010 00:03:45 +0000 http://rawarrior.com/what-is-sjogrens-syndrome/#comment-30661 My doc did a saliva test where thy take a piece of you tounge and send it off to test it.. Insurance throw a fit because it was considered oral surgery, something they did not cover. DOc had to write them 6 letters to tell them I had RA, Lupus, Fybro and now Sjorgrens, it was not Oral surgery to make my teeth pretty was to help Dx my problems.. Make sure your doc tells your insurance before any major tests.. Good luck to all of you, bless your hearts if you have it. My doc did a saliva test where thy take a piece of you tounge and send it off to test it.. Insurance throw a fit because it was considered oral surgery, something they did not cover. DOc had to write them 6 letters to tell them I had RA, Lupus, Fybro and now Sjorgrens, it was not Oral surgery to make my teeth pretty was to help Dx my problems.. Make sure your doc tells your insurance before any major tests.. Good luck to all of you, bless your hearts if you have it.

]]> By: Pamela Montgomery http://rawarrior.com/what-is-sjogrens-syndrome/comment-page-1/?show=comments-11786 Pamela Montgomery Sat, 24 Apr 2010 11:50:35 +0000 http://rawarrior.com/what-is-sjogrens-syndrome/#comment-11786 Thanks for this Kelly - As always you seem to know what I am going through at any given moment. This has been one of the worst weeks I have had since my onset. I have missed almost a week of work (so far the FMLA is holding up for me - please keep your fingers crossed - mine already are crossed from the RA so hey may as well get good use from it, right!) In the last couple of days my nose and eyes have been dry and itchy and I thought it was from the windy conditions going on in AZ but they are still dry and itchy and the wind has stopped. My nose was so red and sore that it brought tears to my eyes trying to scratch (at least the moister helped my eyes!) I see my PC this morning for a note for work - wondering what your views are on B12 shots? Sorry my post is a bit disjointed but then again so am I. Have a terrific weekend and thanks as always for all that you do for us. Thanks for this Kelly -

As always you seem to know what I am going through at any given moment.
This has been one of the worst weeks I have had since my onset. I have missed almost a week of work (so far the FMLA is holding up for me – please keep your fingers crossed – mine already are crossed from the RA so hey may as well get good use from it, right!)
In the last couple of days my nose and eyes have been dry and itchy and I thought it was from the windy conditions going on in AZ but they are still dry and itchy and the wind has stopped. My nose was so red and sore that it brought tears to my eyes trying to scratch (at least the moister helped my eyes!)
I see my PC this morning for a note for work – wondering what your views are on B12 shots?
Sorry my post is a bit disjointed but then again so am I.

Have a terrific weekend and thanks as always for all that you do for us.

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