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  • Biotine

    I was wondering if anyone tried biotine gum or gel? I'm hesitant b/c it has arificial sweetner in it, which is something IC'ers should avoid.

    If I shouldn't use this, is ther a natural lozenge I can suck on to help the dry mouth? Any suggestions would be appreciated!
    I just started a IC diet/low-oxalate diet blog! http://jennysicparty.blogspot.com/

  • #2
    I have tried the Biotene toothpaste and mouthwash. But not these other products. My rheumy gave me a sample of Numoisyn, which is a caplet that's supposed to give you moisture. It tasted like salty nastiness, I'd rather be dry. My dentist and rheum said to try sugar free lemon hard candies. I know, the fake sugar is not supposed to be great for IC but I have done sugar free gum and butterscotch candies without issue. I actually chew gum quite often and it doesn't affect me substantially. Have you read anything about the possibility that Sjogren's may actually be epithelial lupus? I'm starting to wonder if what I have isn't IC after all but because of Sjogren's my body is attacking all mucus membranes and that includes the epithelium in my urethra.....I'm starting to wonder if a lot of IC sufferers on this board are actually Sjogren's sufferers and it's just not clear cut enough to realize it yet....perhaps for some IC is one of the possible issues you can have within Sjogren's or a systemic epithelial lupus....

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    • #3
      Dry Mouth Medications

      FYI -

      You can get a Rx medication to help with dry mouth. There are two - Pilocarpine and Evoxac. I use Evoxac and it takes care of my dry mouth with no side effects.

      Hope this information is helpful to you both.

      NancyB

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      • #4
        shortstuff Since I have Sjogren's too I found that interesting. I've often wondered about the same things but I don't know anything about systemic epithelial lupus. I'm going to do some research into that. I used to chew the sugar free gum to but for some reason I stopped. The dryness of my mouth is unbelievable with the meds. Especially Atarax and Oyxibutin together. Together they dry out my trachea terribly.

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        • #5
          Dakota, we've chatted in the past. I think we went to the same uro for awhile (Segal)? Did you know there is a Sjogren's support group that meets in NYC? The next meeting is next Saturday at 1pm. I plan to go, it'll be my first meeting. I've been trying to read everything I can about it. There are several women with IC on the Sjogren's World boards.

          I also have an extremely dry throat and nose. Nose is so dry it is susceptible to infection and right now it's cold sores. Sooooo yucky! My eyes are the worst but mouth/nose/ airways are starting to be more problematic. I've been on Plaquenil for 5 months now and Restasis too. What rheumy do you see?

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          • #6
            Hi shortstuff! I didn't know about the support group. If you go, I'd be interested to hear about it. I do go on the Sjogren's World boards but not lately so I'll be sure to check that out. I'm still seeing Dr. Segal. Who are you with now? I do not take any meds for the Sjogren's and am not currently seeing a rheumy. However, I am developing some symptoms that are very similiar to fibro and I will be searching for a good one soon. I think at this point I'm going for the IC triple. IC, Sjogrens, and maybe fibro. My dentist wants me using something called Denta 5000 Plus after brushing with Biotene. He tells me I'm very lucky that my teeth are in fairly good shape. I told him it's because I brush like 3 to 4 times a day. Sometimes I can barely swallow I'm so dried out from the Oxybutin and Atarax. Let me know how the support group goes.

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            • #7
              Hey Dakota. I will try to give you an update Sunday night. I'm going to the support group tomorrow. I am taking Plaquenil for Sjogren's as well as Restasis for my eyes. My eyes are still very sticky and bad in the morning (it stinks to wake up knowing you're sick every day of your life if you even manage to get to sleep). Plaquenil is the only drug that can possibly slow the progression of SjS. It's a disease modifying anti rheumatic. It's actually anti-malarial and somehow docs discovered people with RA taking this medication for trips had improvement in their symptoms. There is a small possibility you can develop vision problems while taking it so you need to go to the opthalmologist twice a year. My rheumatologist told me I'd probably never feel a change in my eyes or mouth from the medication but without it I'd get drier faster. Many people have found it helps with fatigue, muscle and joint pain but it can take 6+ months to work. I'm in month #5....so don't know yet. Anyway, that's just some info for you. My doc said that he has 2 other patients that also have IC and their symptoms improved with Plaquenil. That's why I really wonder if for some of us our "IC" is just part of a Sjogren's/Lupus illness......

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              • #8
                ~shortstuff Thanks for the info. I tried Restasis a long time ago but couldn't use it. It made my eyes burn so bad. Most of my problems are related to my mouth. I have no saliva and have had trouble with the parotid glands swelling. Somehow I've pushed the Sjogren's to the side because of the 24/7 vaginal pain from IC. I've tried just about everything for IC and couldn't handle the thought of anymore meds so I'm really not up to date on what's available now for Sjogren's treatment. I go through stages with it. Sometimes I've had my lips peel and crack in the corners. I was dianosed with it a long time ago, but I'm just now starting to feel fatigue and muscle pain. I will be very interested to hear about the support group. One of my uro's made a comment that he was not surprised to hear I had both illnesses so I think you may be on to something about the connection. My IC started when I had three kidney stone procedures and I've always blamed it on that. I think the stent that I had did some kind of damage to my bladder. Hope you get some good feedback at the support group. Let me know how it goes.

                Best to you,
                Dakota

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                • #9
                  Originally posted by shortstuff View Post
                  Plaquenil is the only drug that can possibly slow the progression of SjS. It's a disease modifying anti rheumatic. It's actually anti-malarial and somehow docs discovered people with RA taking this medication for trips had improvement in their symptoms.
                  I saw this thread and wanted to comment. My Rheumy thinks I have SJS though I am seroneg. My only symptoms are dry eyes, (I use restasis and drops all day long, gel at night), sore hips but no osteo causing it. I've had one cortizone shot in each hip a couple months ago which greatly helped but it might be wearing off.
                  ANYWAYS what I was going to say was I was put on plaquenil for about 3 weeks until I developed an allergic reaction to it with hives all over my body. But my bladder felt GREAT, its like it just got real quiet and quit talking to me all the time! I noticed it within a few days. My rheumy thinks they are related as in autoimmune as well as gerd, IBS, hashimotos etc which I have also. My UG says maybe but they just don't know yet if IC is autoimmune or not.
                  I was so disappointed I had to go off the plaquenil since it made this annoying problem with my bladder go away! Maybe there will be something else in the future.
                  Cindi


                  Gelnique for frequency/urgency - works great
                  Macrobid after sex
                  Prilosec, continuous birth control pills
                  synthroid .088mg, mucinex-d, restasis

                  Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                  Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                  IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                  AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                  AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                  Great treatment flowchart on page 19 of the pdf

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                  • #10
                    I take the plaquenil without any problems. Actually before I went on it my glands used to swell all the time and they haven't since I started so I am a believer in atleast that much. I had plugs put in my eyes and they are a blessing. I only have to use drops 4 times a day and have no trouble through the night.

                    I take Salagen and it's great. It's a generic and tons cheaper than the Evoxac. You just have to take it more often. I would be totally miserable without it.

                    Funny how someone wrote their bladder was better on the Plaquenil. I always associated it with the low dose steroid I was on but maybe it is the Plaquenil. I find I can vary my diet a little more.
                    Interesting about the lupus.

                    There is also a Halls that is made just to moisturize the mouth. I like them pretty well. Doesn't seem to mess with my bladder.

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