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  • Allergic to someTHING?

    Bear with me...

    I have a mild case of IC that I keep at bay with elmiron 2-3 times a day (luckily). Once the elmiron worked, I was just so relieved, I stopped looking at options because I was just happy to feel "normal" again! =)

    It never occured tome to read the allergy threads because I thought they did not pertain to me because my elmiron treatment worked. I also never did any research on it...

    That was until tonight. I was talking to a new friend (who I told about my IC earlier in the night) about my teeth and gums because she works in a dental office. I was telling her that my gums are a little sensitive...more so now then when I DIDN'T floss! Then amazingly she asked me something like, "Does your skin get irritated when you scratch it? Red, blotchy?"

    "YES!" I practicly shouted. She said, "Well I have this theory about some people having an overactive histamine response". I think this is a term that she made up, but basicly she was saying that these people have something in theor bodies that trigger too many histamines when it is un-necessary. Like if you have an itch on your arm, you scratch it, but the skin is so sensitive, it reacts. (In her line of work, she noticed a connection with people who have this sensitive skin and bleeding gums despite flossing every day).

    Then she said, "Well, do you think maybe that is what is going on with your bladder? Maybe there are hitamines causing havoc down there?"

    And then <DING>! I remembered reading that some people use anti histamines to treat their IC, although I don't know quite how it works.

    So does anyone think its possible that this is all just a strange allergic reaction to one thing in perticular? OR something in the water? Or, oh I don't know? But it's a neat theory and I was curious to hear other peoples thoughts and learn more if I was ignorant.

    Is it POSSIBLE that the answer is that easy?

    Be Well - erica
    IC
    Symptoms Began 4/03
    Diagnosed 9/03
    Started Elmiron 9/03 - 100mg X3 a day (As of 7/14 taking 2 in the morning and 1 at night, as of 11/14, taking 2 in the morning and 2 at night for 4 total per day. As of 7/17 taking 3 in the morning and 3 at night to knock out last symptoms)

    VVS
    Diagnosed 6/07
    Hydroxyzine 25mg/day (Stopped taking when I was trying to get pregnant and have not restarted after birth of baby.)
    Estrace Cream X2 a day (Stopped using before and during my pregnancy. Have not restarted.)

  • #2
    Actually, overactive histamine reaction is one of the main theories about IC. But, I'm not sure it's an allergic response. Histamines are also released in response to trauma or irritation. For example, when you scratch your arm and it turns red...that is histamine activity.

    By the way, glad the elmiron is working for you!
    mom_in_ma

    Comment


    • #3
      It's great that elmiron is doing the job for you.

      Since nobody really knows what causes IC, it's possible that it might be an allergic reaction. I know I have some distinct allergies in addition to having bladder pain from some foods and drinks.

      Hopefully one day soon, we'll all know. And once the cause is found, a cure will not be far behind.
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

      Comment


      • #4
        Originally posted by glowstrz View Post
        Bear with me...

        "Well I have this theory about some people having an overactive histamine response". I think this is a term that she made up, but basicly she was saying that these people have something in theor bodies that trigger too many histamines when it is un-necessary. Like if you have an itch on your arm, you scratch it, but the skin is so sensitive, it reacts. (In her line of work, she noticed a connection with people who have this sensitive skin and bleeding gums despite flossing every day).

        Then she said, "Well, do you think maybe that is what is going on with your bladder? Maybe there are hitamines causing havoc down there?"

        So does anyone think its possible that this is all just a strange allergic reaction to one thing in perticular? OR something in the water? Or, oh I don't know? But it's a neat theory and I was curious to hear other peoples thoughts and learn more if I was ignorant.

        Is it POSSIBLE that the answer is that easy?

        Be Well - erica
        I went to a doc that thinks this what the problem is. He suggests not bathing and only showering in tepid water. He said hot water releases histamines and city water also has a lot of chemicals that Icers are allergic to. His theory is that this is a bladder allergy. Unfortunately, his treatment regime did not work for me but I am helped by not taking bathes or drinking city water. -Vicki
        Blessings and Hope

        Current Meds.
        OFF MY MEDS
        Vivelle Dot: .10 changed every 72 hours
        Compoounded Progesterone 25mg/night

        Current Supplements
        Hydroeye: 2 pills AM

        Diagnosed
        1995: Endometriosis
        1998: Interstitial Cystitis
        2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
        2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
        2012: Laparoscopic Removal of Adhesions and Staples

        Comment


        • #5
          You know this theory could be true.. I have always thought that I was having some kind of reaction, but could never quite put my finger on it.. I do know that about 4 years ago I had a really really bad flare but at the time I had no clue what I had nor did my GYN, but she started me on elavil and I told her for some strange reason antihistimines seems to help my condition.. She was stumped then, but put me on Clariton D.. To my suprise all my symptoms were gone and it lasted 4 wonderful years.. But I quit taking elavil and the Clariton..And BAM with being off my meds and having tones of stress I had a major flare again along with kidney stones.. Right after that is when I was introduced to IC and was dg...So your friend may be on to something....
          Hugs
          Ronda

          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


          Link to Patient Handbook:
          http://www.ic-network.com/handbook/

          Diet Reference Sheet:
          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

          Meds I have Tried:
          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
          Lexapro< Bad reaction to this med!
          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

          Dx With IC in Nov 2006 with Hydro/Cysto
          Hydro/Cysto Caused Bladder to Rupture.

          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



          ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

          Comment


          • #6
            WOW...this is all so facinating...I was shocked this new friend of mine, basicly head me say, "my gums hurt"...and was able to come to the theory about the histamines!

            We have come so far with medicine, it drives me a little crazy that we still do not know a cause....and once we do, I hope Donna is right and a cure will not be far behind =)

            Thanks - erica
            IC
            Symptoms Began 4/03
            Diagnosed 9/03
            Started Elmiron 9/03 - 100mg X3 a day (As of 7/14 taking 2 in the morning and 1 at night, as of 11/14, taking 2 in the morning and 2 at night for 4 total per day. As of 7/17 taking 3 in the morning and 3 at night to knock out last symptoms)

            VVS
            Diagnosed 6/07
            Hydroxyzine 25mg/day (Stopped taking when I was trying to get pregnant and have not restarted after birth of baby.)
            Estrace Cream X2 a day (Stopped using before and during my pregnancy. Have not restarted.)

            Comment


            • #7
              You know I am glad you brought this up, because I am going to start back on Clariton
              Hugs
              Ronda

              ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


              Link to Patient Handbook:
              http://www.ic-network.com/handbook/

              Diet Reference Sheet:
              http://www.ic-network.com/diet/icndi...tsheet0909.pdf

              Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

              Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

              Meds I have Tried:
              Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
              Lexapro< Bad reaction to this med!
              Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

              Dx With IC in Nov 2006 with Hydro/Cysto
              Hydro/Cysto Caused Bladder to Rupture.

              Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



              ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

              Comment


              • #8
                This is just amazing timing!

                I'm looking into the histamine theory as well as just last night got overly ambitious cleaning in the tub last night, and end up with large red scrubbing marks all over me. Wow! I NEVER knew that was a histamine response. My mouth also bleeds terribly just with brushing. OMGoodness!

                I can't wait till I can afford to just donate the proceeds from my store in full to research. I KNOW there is a cure out there!!!
                http://www.TheCraftyEwe.etsy.com

                Comment


                • #9
                  I think there really is an allergic connection. I tend to feel great between late Oct. (after the first frost) until the middle of Feb. (when stuff starts budding). The funny thing is that I hardly ever got to attend a Valentine party as a kid (always a sore throat and swollen glands). My Mom still teases me about this. So...it really is funny that I always start flaring with my IC around the 14th of Feb. I started taking Zyrtec in the mornings now. I think it helps some. I have been taking bennedryl at night for quite a while. When I mentioned to one of my friends that I could almost predict when my flares would hit during the year and she said that was typical of fibromyalgia (which my doc now thinks I have). Wish the truth could be found out about this.

                  Janice

                  Comment


                  • #10
                    Hey Jan - Do you take anything else along with the alergy meds like elmoron? Do you just take the alergy meds when you flare? How quickly does it help the flare. I have SO many questions. I feel like a dr. trying to diagnose!

                    Moonheart - Wow, we have similer stories =) I too am really sensitive to cleaning products. My roomate LOVE bleach and I HATE it because I smell it for like 12 hours after I clean the bathroom with cleaners that contain bleach...and if I dont use rubber gloves the my hands get sensitive. Thank you for looking to donate money to our cause. After I do the breast cancer 30day at the end of the year I want to do fundraisers for US!

                    =) erica
                    IC
                    Symptoms Began 4/03
                    Diagnosed 9/03
                    Started Elmiron 9/03 - 100mg X3 a day (As of 7/14 taking 2 in the morning and 1 at night, as of 11/14, taking 2 in the morning and 2 at night for 4 total per day. As of 7/17 taking 3 in the morning and 3 at night to knock out last symptoms)

                    VVS
                    Diagnosed 6/07
                    Hydroxyzine 25mg/day (Stopped taking when I was trying to get pregnant and have not restarted after birth of baby.)
                    Estrace Cream X2 a day (Stopped using before and during my pregnancy. Have not restarted.)

                    Comment


                    • #11
                      Hey girlys..
                      I started a new post asking who all has allergies.. I really think there is a connection. This will be interesting to know
                      Hugs
                      Ronda

                      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                      Link to Patient Handbook:
                      http://www.ic-network.com/handbook/

                      Diet Reference Sheet:
                      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                      Meds I have Tried:
                      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                      Lexapro< Bad reaction to this med!
                      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                      Dx With IC in Nov 2006 with Hydro/Cysto
                      Hydro/Cysto Caused Bladder to Rupture.

                      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                      Comment


                      • #12
                        Originally posted by glowstrz View Post
                        Hey Jan - Do you take anything else along with the alergy meds like elmoron? Do you just take the alergy meds when you flare? How quickly does it help the flare. I have SO many questions. I feel like a dr. trying to diagnose!

                        Moonheart - Wow, we have similer stories =) I too am really sensitive to cleaning products. My roomate LOVE bleach and I HATE it because I smell it for like 12 hours after I clean the bathroom with cleaners that contain bleach...and if I dont use rubber gloves the my hands get sensitive. Thank you for looking to donate money to our cause. After I do the breast cancer 30day at the end of the year I want to do fundraisers for US!

                        =) erica

                        Well actually it was from scrubbing my skin with my nails, but you hit the nail on the head anyway! I can't STAND bleach and all. That's why I'm also going to be creating non-irritating cleaners that are organic and have essential oils in them so that they won't bother us sensitive people. I'm going to sell them over the web and at our local farmer's markets.

                        I'm really excited you are doing the 30day like that! We really need something like that and maybe you can email me and give me some input for IC Awareness day? That would be great! :woohoo:
                        http://www.TheCraftyEwe.etsy.com

                        Comment


                        • #13
                          Erica, I have a whole bag of tricks that I do for flares. I have taken elmiron in the past--did not seem to help me. I take Neurontin, bidex 400, benedryll, zyrtex, glucosomine w/MSM, and fish oil and use my alpha-stim unit right now. I pretty much stay in pain all of the time--bummer--so I use my heating pad a lot and wear lidoderm patches, too. I have had IC for about 9 years so I just keep trying different treatments. Hope you figure out what works for you soon.

                          Janice

                          Comment


                          • #14
                            After my uro confimed IC, the next step was to send me to an allergist. They tested for foods so far. They have me on zytrec & singular which has helped. I don't seem to be IC diet sensitive, but I stay away from the foods that I had a reaction from the allergy test. I also don't drink soda, teas, or coffee. I had hives for two years once and they never figured out why. I do think IC & allergies are connected.
                            Meds on now:

                            dextro 10mg

                            5000mg Vitamin D- when tested, I was sooo low.
                            Compound Hormones- Had hysterectomy when 24, ovaries out 37

                            At night:


                            4mg Zanaflex- Fibro & PFD
                            plendil- Raynalds

                            I have Fibro, IC, IBS, PFD, Raynauds.

                            Tried:

                            Past Meds
                            Lexpro- changed to Cymbalta for better pain relief –off both
                            Ultram – three times a day. Helped , I was tired of always being so tired.
                            Elmiron-took for a year-
                            Topamax-Did not need anymore since on dextro.
                            Atarax- did not need anymore

                            Pictures: Hubby & Me, Ozzy, My three Sons!!
                            What a proud Mother I am!!



                            .

                            Comment


                            • #15
                              glowstrz,

                              The red skin thing: Dermatographia. I have that too. I can write words out on my arm and the red lines last a good 15 minutes, but if I'm in the shower or swimming they can last an hour or two. I also have sensitive gums that bleed when something pokes them (sharp chip, dental cleaning, flossing too hard). I don't have gum disease, just very sensitive gums. I'm allergic to everything (astmatic allergic to certain things like birds/feathers, hay, and long exposure to grass). Thank God I have no food allergies. I have noticed an improvement with Atarax, within a few days. A week after my last urine analysis (that showed red and white blood cells), I had none today. I had my first instillation (Elmiron/lidocane) and it wasn't as bad as the cath I had last week for the potassium sensitivity text to check for IC (followed with a lidocane flush). She said to hold it for 20-30 minutes. It burned due to the foley, but it has been 2 hours and I can still hold it. I feel like I need to pee, like the last several months, but dang this a huge improvement compared to just a week ago! I really think the Atarax is helping and the Ultram as well. I'm only 2 1/2 weeks out on Elmiron, so I don't think the drastic improvement could be Elmiron.

                              Here's a link to dermatographia if you're interested!: http://www.ohiohealth.com/bodymayo.c...etail&ref=2895

                              I know others with this skin thing, but I'm the only one with IC and crappy gums. So there is no cause/effect relationship, but they say people with allergies are more likely to get IC... and I fit that profile for sure!

                              Hope this helped!
                              [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                              [

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