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  • Autoimmune connection?

    For those of you who benefit from dex: I'm wondering if you have a family history of autoimmune diseases, such as Graves', spondylitis, or celiac (and associated osteoporosis).

    Dex works by stimulating certain nerve receptors (including those for adrenaline and dopamine). Maybe our immune systems are incorrectly turning off those nerve receptors, and the reason dex helps is that it counteracts that effect by stimulating them.

    Just a theory.
    Last edited by cgirard; 07-26-2011, 07:31 AM.
    Clinical trial participants are urgently needed for research on IC/PBS to move forward. ICN Clinical Trials Page.

  • #2
    My family has a lot of diabetics and asthmatics, but not the ones you mentioned.

    Donna
    Stay safe


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    • #3
      autoimmune connection

      My brother has Multiple Sclerosis, which I believe, but positive, is considered an autimmune disease.

      This is an interesting thread. I hope you get some more responses.

      Comment


      • #4
        No, but its odd that my aunt and cousin had it.
        <center>
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        • #5
          autoimmune

          Originally posted by Linda May View Post
          No, but its odd that my aunt and cousin had it.
          That IS interesting.

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          • #6
            I think there is definitely an auto immune component to this. The doctors always tell me that my body acts like it is attacking itself but they can't figure out why. I have internal adhesions all over my pelvic floor, bladder, uterus, colon and small intestines. I recently found out that I have major (severe) food allergies to dairy and eggs (minor for wheat) yet nothing really happens when I eat them and I've eaten dairy and eggs my entire life!!

            I also have fibro, endo, chronic kidneystones, IBS (which could have been cause by eating allergens), adrenal stress disorder, chronic fatigue syndrome, and a malabsorption disoder.....My body is not absorbing nutrients,vitamins and minerals. Oh and now I am getting vitaligo

            If you look on the boards you will see that no one really just has IC....Most of us have a cluster of disorders which I think is an auto immune response.....but to what?????

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            • #7
              I also think IC is an autoimmune disease.

              First, I got vitiligo (about 35 or so years ago). Then thyroid disease and next is IC. Of course, there is a little arthritis thrown in for good measure.

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              • #8
                Dito, i think it is autoimmune related, we just get to many autoimmune related conditions that are.

                If fact when I saw my new uro he wondered if I had IC?, when I said I do not have MS, Lupus, chrones, or Fibro, I have been tested.

                But I do have, low thyroid, hypoglycemia, low BP, IBS, arthritis, migraines, VV,low immunity, sleep issues, many allergies to foods and meds. (I am sure I am forgetting somethings)

                Also a biggie for me is urinary retention, so he is leaning to wards it is all from the retention.

                My last Uro, whom I loved had to suddenly close his practice for some reason, so I am in the search for a new Uro who gets it all, ( fun, fun. fun)

                My last Uro did a 3rd Cysto in a 8 mon period, he was the only one who did it under anesthetic and said I clearly have all the tell tale makers of IC in my bladder, could not figure out why previous Uros could not see it. He decided I have a big flabby bladder and he needed to fill it a lot more than a normal IC bladder in order to see the IC, so he figured because the other Uros had not put me out for the Cysto, they were not able to fill my bladder enough to see the bleeding etc. and that they had not taken into consideration that my bladder is a big as it is from being stretched out for years from retention.

                I figure I have had IC all my life, so who knows which came first, the IC or retention. I know as a kid I was always in trouble in school because I could not make an hour class without having to leave to pee. I always needed to pee more often than my friends, it was not till much later in life when they figured out I would get frequent UTI's without symptoms of them and with immunity problems the UTI's only show if cultured.

                For years I just had the frequency and urgency that I was aware of and I never told my Dr. I figured it was normal. In my teens the never ending pelvic pain started but no ever related it to my bladder, it was always thought to be female problems. I had all the symptoms of VV which were treated endlessly as yeast infections. Then in my mid 30's I got a kidney infection which I could not get rid of, this escalated all the symptoms and more.

                Nobody still put it together, it let me with kidney pain for a year, then I went back to normal symptom's for a while till the next bad kidney infections, then multiple kidney stones, after this things never did go back to normal for me.

                After many hours of researching and many, many Dr's of all sorts, finally a Dr. put it all together with my constant prodding about what I had being reading that my problems were probably bladder related.

                I think nobody can have this many problems and it not be autoimmune related in someway, I am not too sure which comes first, I just thinks things snowball once you get one thing.

                Here hoping someday soon someone researches it enough to figure this out, maybe this is where a cure lies.

                Best wishes to everyone MG
                My are with you all. May you all find a way to peace and joy in your lives.

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                • #9
                  I just had a bunch more blood work done and all of it came back OK (thyroid, liver, glucose, etc.) EXCEPT I tested ANA positive. I now have to go to a rheumatologist for further testing to check for lupus, RA and other autoimmune conditions.

                  My only other issues before being diagnosed with IC were migraines and allergies. After getting IC, I discovered that both of those conditions could be considered autoimmune. Now this. I don't think it's a coincidence at all.

                  Anyone else here test ANA+?
                  Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

                  Current medications/treatments:
                  Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

                  Previous medications/treatments:
                  Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

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                  • #10
                    I agree

                    This is SO interesting! I without doubt believe there is an auto-immune component to IC. I have had a thyroid problem for years and was just recently diagnosed with A typical(Ithink that is it) gastritis B and further testing found that it is the auto immune kind. I have to get weekly vitamin B12 shots because because vitamin B12 can not get through my stomach lining because of this disease. Interestingly my IC has been much better lately and I have been systematically cutting back on my pain meds! Hope this helps!

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                    • #11
                      Drug Trials for a new auto-immune drug for IC patients

                      There is a Dr that has been treating IC for over 30 yrs. He believes that IC is auto immune related and has a drug called adalimumab and needs patients to participate in the study (in southern CA).

                      The Dr name is Philip C. Bosch, MD. I am interested in partipating in the study but was wondering if anyone else had heard of this Dr and his reputation OR this drug and its side effects?
                      Crystal

                      Diagnosed 2/2011
                      30 years old

                      Current Treatment:
                      Elmiron
                      Antihistamine
                      Quercetin
                      Aloe Leaf
                      N-Acetyl Glucosamine
                      Pribiotic
                      Yoga
                      Meditation
                      Leap Diet (based on MRT food sensitivity test)
                      IC Diet
                      Prayer!

                      Planning to try:
                      Colostrum

                      Comment


                      • #12
                        My sister has a severe case of Graves disease. I have several family members with autoimmune disorders. My aunt with the most bad luck. I can't remember them all but I know she has Fibromyalgia and ulcerative colitis being I think the worst ones.
                        Facebook- Ann Stockmeyer Rachinger

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                        • #13
                          Oh and to add to that my aunt has IC and Rheumatoid arthritis as well.
                          Facebook- Ann Stockmeyer Rachinger

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                          • #14
                            I just saw my URO yesterday and she suggested I get on Cyclosporine which suppresses the immune system. I questioned her whether this meant she suspected it was auto-immune and she said no, but it WAS an immune issue.

                            When I questioned further she said that it seems as though my immune system is making too much of (a word I wish I could for the life of me remember, I think it starts with a c) which is believed to cause irritation (which is why this med is also suggested for crohn's, RA, and other such things). I've always had a very strong immune system, have only had the flu twice in my life, and when I had chickpox I thought it was fun because I wasn't much affected by it 'sides the itching.

                            So in other words it's not quite auto-immune, but does seem to have something to do with the immune system.

                            EDIT: AHAH! It's these guys -- http://en.wikipedia.org/wiki/Cytokine

                            "Inflammation is produced by eicosanoids and cytokines, which are released by injured or infected cells"

                            From:http://en.wikipedia.org/wiki/Immune_system#Inflammation

                            Those damn lil' bastards,
                            • 27 year old student
                            • Had symptoms since I was 5
                            • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
                            • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
                            • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
                            • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


                            Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

                            What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

                            What didn't work: Elavil, vistaril (12/22)

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                            • #15
                              Lupus

                              My mum has Lupus and various other things.

                              It HAS to be connected. I have often wondered about taking my mums immune suppressants to see what happens.

                              She takes this supp called Max-gsl which she is doing well on this is suggested for auto-immune conditions. I find it interesting because a lot of the suppliments in the product including N-Acety,l Glucosamine, and a few of the stuff in cystoprotek are what I see on this forum.

                              Interesting stuff.
                              TMJ Dysfunction 2009
                              Vulvodynia and/or PFD 2010
                              IC, based on symptoms alone 2010.
                              PCOS March 2012

                              8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

                              Currently using: IC Diet...pain meds as needed
                              Medications / treatment tried and discounted:
                              Fluconazole 150mg 1 per week for 6 months (yeast)
                              Endep 25mg - 4months
                              Lyrica 75mg - 2 months - FLARE
                              Oxytrol patch - I think this caused retention.
                              Countless creams, lotions and potions.
                              Cystoprotek - no change in symptoms
                              PT - for 1 year
                              Various herbs and supplements

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