No announcement yet.

Vitamin D and Interstitial Cystitis

  • Time
  • Show
Clear All
new posts

  • Vitamin D and Interstitial Cystitis

    Thought this was an interesting article worth sharing.

    By Richard Petty, MD.

  • #2
    Vitamin D

    Yes, I agree, very interesting article. Let's keep our fingers crossed that they find something out to help us all out!


    • #3
      Thank you for posting this. I'd be interested in seeing this BXL628 tested in human patients with IC; it seems as if it has potential to be an effective treatment. It is always good to know that there is research being done out there, and that researchers are trying to find a cure.

      Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
      Current IC treatments: menstrual suppression
      Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
      As-needed treatments for other conditions: Klonopin, Ambien


      • #4
        What they have found and are going to find more of in the near future, is that the use of sunblock in everything including our clothing, has lead to far more diseases than the few it has claimed to prevent. Very few people a year I think it is die of skin cancer, but thousands and thousands more are dying from other forms of cancer such as colon, lung, etc. that are directly linked to lack of Vitamin D. Not the kind you get from pig skin put into your milk daily, but the kind your body generates on it's own in the right proportions, and going to the right places in your body.

        It seems now that Interstitial Cystitis is going to also be one of these diseases. Right along with all of it's sister diseases.

        Maybe eventually we'll be told that it's okay to take off our sunscreen and gradually be allowed to go back in the sun, with less and less "protection" (who's being protected? Us, or the company's bankbooks?) and perhaps we'll gradually see these diseases disappear one by one.


        • #5
          I was tested for Vit D3 levels by my endocrinologist and found to be extremely low. I was supplementing and using a special sunlamp and then kind of slacked off on it. I'm using the tanning bed now and I will start taking my supplements again and see if they help! Charisse
          The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
          First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
          Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
          Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
          Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
          BABY GIRL 10/28/08 *** BABY BOY 7/8/11


          • #6
            VIt D

            My thyroid doctor has me taking 50,000 units twice a month of Vit D because mine was low. I haven't got to read the article you posted yet because I'm at work and it won't let me get on there.


            • #7
              My PCP has become big on checking everyone's Vit D mom and my husband have both been low, although neither has IC. My husband has been on 2 "courses" of the vitamin, and my mom takes it every other week. I am getting mine checked next week, after I have been off my vitamins for a week. I heard somewhere that low vit D is somehow linked to pain modulation, but I haven't really checked into that, so can't quote a source. Maybe this weekend when I am not so tired I'll look it up (I also have fibromyalgia and feel like a truck hit me, so am laying low, lol)......

              Thanks for the article, definitely food for thought.
              My dx: RA, Fibro, Interstitial Cystitis, Bipolar Type 2, Pelvic Floor Dysfunction, IBS
              My meds: MTX, Leukovorin, Humira, Prednisone for RA flares, Celebrex, Orphenedrine, Tramadol as needed, Wellbutrin, Lamictal, Lyrica, Trazodone, Nexium, Singulair, Atarax, Elmiron, Provigil, and Macrobid/Trimethoprim (rotate monthly). I also take a multivitamin, Magnesium, Calcium supplements, fiber supplements, probiotics, and vitamin D.
              Current treatments: bladder instillations

              Come play with me on Facebook!


              • #8
                My mom has to go to the dermatologist once or twice monthly to have skin cancer & precancerous lesions removed. It's not a pleasant process for her to have the lesions burned off or cut out & many have been from her face. While the skin cancer probably won't kill her, like IC it can become a chronic & painful condition...

                While vitamin D deficiency obviously needs to be investigated, I don't plan on spending much time in the sun without my hat & sunblock this summer.
                Moderation in all things is a good idea.

                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.

                New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                Source - Pinterest

                Current treatments:
                -IC diet
                -Elavil 50mg at night
                -Continuous use birth control pills (4-5 periods/year)
                -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                -Pyridium if needed,
                -Pain medicine at bedtime daily, as needed during the day several times per week
                -Antibiotic when doing an instillation to prevent UTI
                -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                -Dye Free Benadryl 50 mg at bedtime
                -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                -Managing stress= VERY important!
                -Fur therapy: Hugging the cat!


                • #9
                  Interesting article. Think I'll make it a point to get out of the office and into the sunshine at lunchtime more often.

                  Thanks for posting.



                  • #10
                    My vitamin d was 10.5 its suppose to be 50 or higher. I am now taking vitamind d supplements 5,000 iu.


                    • #11
                      I am being sent to an endocrine doctor next week b/c my vitamin D came back 17 and thyroid was off. My doctor told me that a severe Vitamin D deficiency can cause muscle soreness, chronic fatigue, etc. Do you mind telling me what IU means when you talk about taking your vitamin D.


                      "Consider it pure joy, my brothers when you face trials of many kinds, because you know that the testing of your faith develops perserverance." James1:2

                      Diagnosed with IC 3/2007
                      Endometriosis w/ laproscopic surgery 2003 and 2007
                      Hydro, Cysto, urodynamics testing, and many instills
                      IBS 1998
                      Current Medications: Elmiron (200mg morning and night), Vaginal Valium Suppository at night, IF 3 WAVE Stimulator, Cymbalta, and birth control

                      "Thank you to all for your support. I have been able to live a more normal life thanks to all the information found on this site and the angles I have encountered."
                      THESE ARE THE TWO LOVES OF MY LIFE!


                      • #12
                        d3, too

                        I'm taking high amounts of D3, also. But it was a bummer to see that the D3 analogue study on chronic prostitis was discontinued because it didn't help in a trial, even though I guess in the test tube it looked promising.
                        I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.


                        • #13
                          People who die of related diseases of lack of Vit D aren't even in an income bracket that can afford sun screen.
                          Dx with IC sept. 2005
                          elmiron, pyridium, daily abx, detrol LA, instillations

                          ~~I'm a Nursing senior at Michigan State University~~
                          Go Spartans!


                          • #14

                            Any tips on taking supplements???
                            I still flare from taking ANY supplements....
                            i know i need them but i have tried everything....liquid stuff----that stuff is AWFUL....
                            makes me so sick....the liquid types....i have spent so much money on stuff i either get sick from or just cannot take it since my bladder hates them all....
                            i do find if i have boost and sip water too then its ok.....
                            anyone got any ideas on that.....
                            well let me know.....
                            i hope everyone takes great care

                            hugs n better body days
                            Have dealt with chronic pain and gerd/ibs since '98 endometriosis, vulvodynia diagnosed 2000, ic diagnosed around 2004, chronic epstein barr-like virus 2011
                            Hysterectomy/oophorectomy 2014 endo had destroyed everything
                            Now dealing with recurrence and menopause in late 30s
                            Other things--migraines, chronic hives, eczema, raynauds, congenital scoliosis, broke 3 vertebrae in middle of back when i was 16, heart defect (ventrical septal defect)


                            • #15
                              vitamin d

                              Is this the same vitamin D that is usually included with calcium pills? I have been meaning to get back on my calcium and magnesuim pills, but have been flaring for weeks and am terified that this might make it worse.