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  • Prednisone?

    Has low dose prednisone helped anyones IC? It is a strong anti-inflammatory.
    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

  • #2
    I took prednisone for a severe allergic reaction and have had other steroids instilled in my bladder, but the oral prednisone had some pretty upsetting side effects --- like swelling --- my face looked fat and round and fingers puffed. I was soooo glad when the rash was gone so I could be weaned from it. I worked with a nurse who had to take it full time and she looked puffy all the time.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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    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.

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    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


    • #3
      There was a study done a few years ago using prednisone for IC, google it and you can read it. Long term prednisone does have its own risks though.

      Suzanne

      Comment


      • #4
        Thanks I looked at it. It looks like it REALLY helped out those with pain. I wonder why its not used more often..........
        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

        Comment


        • #5
          Long term prednisone use has some harsh side effects. My Grandmother had to take it for years, it was good for what she needed but the side effects were not good at all. Not just side effects while you take it but what it does to you long term. Her skin was tissue paper thin and would break open and bleed easily. It's not something I would ever take long term.
          Link to the patient information, everything from What is IC? to Disability
          http://www.ic-network.com/patientlinks.html

          American Urological Association Clinical Guideline
          Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
          http://www.auanet.org/content/guidel...ent_ic-bps.pdf

          Comment


          • #6
            Yes, prednisone has some serious side effects. Bob used to take it when he got poison ivy rash, OMG, he was a monster, blew up like a balloon. There are a lot of other things out there that have way fewer side effects. Please take a look at everything and the side effects before you take it. It is not something you can take long term anyway. Jill, wife of Bob

            Comment


            • #7
              In the study the patients were on low dose prednisone for three months which is considered long term use. Prednisone used longer than 5 days can lead to suppression of your adrenal glands, increase risk of osteoporosis, type 2 diabetes and suppress the immune response leading to increase risk of infections. So, it is given in the lowest dose possible for the shortest amount of time.

              Suzanne

              Comment


              • #8
                I had legg perthes as a kid, which is the same thing as avascular necrosis in adults. They do not know why it happens to kids BUT they know avascular necrosis is caused by prednisone and other steroids. Avascular necrosis will cause such severe bone damage, you will need a hip replacement. I had a hip replacement at the age of 34 (I am 35) due to this damaging disease. Please consider, prendisone has severe side effects. Not being able to walk well (especially with IC is nightmarish)....take it from me! I had to hobble with a cane and/or walker to the bathroom every 15 minutes. Not cool!!

                Check me out on facebook: http://www.facebook.com/glory.ic
                Diagnosed in early 7-2008 w/ IC: glomerations, mucosal cracking, & crystal embedding in the trigone. First cystoscopy & hydrodistention 7-2008
                Fervent prayer to God-I'm seeking divine healing on God's time table-it hasn't happened yet but I trust in Him for deliverance!
                Tried: Hydroxyzine HCL 50mg-I was a zombie! ,Took 300 mg Elmiron daily (over a year later), Instills, Amitryptiline, Cymbalta, Acupuncture, Herbs & marshmallow root tea, Hydrocodone than oxycodone for pain, Tramadol, Soma, Phenazopyridine (pyridium), MSM gel
                Still taking: Gabapentin (3 pills each night-300mg each), Melatonin (natural supplement)
                The latest, trying to cut out wheat & sugar to see if it helps ( I am desperate to find something-other than meds)! I just got off of a oxycodone habit that I originally was using to try & kill pain to function. I believe I had Opioid-induced hyperalgesia! My pain is not much worse giving up the pain meds after taking them for 4.5 years...it's about the same! It was a vicious cycle!
                IC runs in my family-My aunt has the same condition. The women on my maternal side have frequency issues. I have had frequency for many years. The pain started in December 2005 after I was in a car accident. Other : Hip disease (legg perthes as a child-resulting in a damaged femoral head), I had total hip replacement on my right hip in April 2010 at the age of 34. Had a hysterectomy in October 2010 due to pelvic pain & an unusual uterus.

                Comment


                • #9
                  Thanks for all these comments. I'm not starting it, was just wondering as I had cortisone shots in each hip for bursitis and wow the pain has been gone now for two months. Though I think local injections of cortisone are alot different then oral use as the local injection stays where you put it and doesn't travel through your whole system. I've had to take those 6 day packs before myself for poison ivy and for a spider bite. I had no reactions but I did notice they want to make sure at least 90 days has gone by before they give you another.
                  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

                  Comment


                  • #10
                    I've had those cortisone shots in the hip, too to see if it would help. In my case, it didn't because I had bone on bone. I know some people benefit from those cortisone shots in the hip and it keeps them for a few months of pain. I am glad you got relief!

                    Check me out on facebook: http://www.facebook.com/glory.ic
                    Diagnosed in early 7-2008 w/ IC: glomerations, mucosal cracking, & crystal embedding in the trigone. First cystoscopy & hydrodistention 7-2008
                    Fervent prayer to God-I'm seeking divine healing on God's time table-it hasn't happened yet but I trust in Him for deliverance!
                    Tried: Hydroxyzine HCL 50mg-I was a zombie! ,Took 300 mg Elmiron daily (over a year later), Instills, Amitryptiline, Cymbalta, Acupuncture, Herbs & marshmallow root tea, Hydrocodone than oxycodone for pain, Tramadol, Soma, Phenazopyridine (pyridium), MSM gel
                    Still taking: Gabapentin (3 pills each night-300mg each), Melatonin (natural supplement)
                    The latest, trying to cut out wheat & sugar to see if it helps ( I am desperate to find something-other than meds)! I just got off of a oxycodone habit that I originally was using to try & kill pain to function. I believe I had Opioid-induced hyperalgesia! My pain is not much worse giving up the pain meds after taking them for 4.5 years...it's about the same! It was a vicious cycle!
                    IC runs in my family-My aunt has the same condition. The women on my maternal side have frequency issues. I have had frequency for many years. The pain started in December 2005 after I was in a car accident. Other : Hip disease (legg perthes as a child-resulting in a damaged femoral head), I had total hip replacement on my right hip in April 2010 at the age of 34. Had a hysterectomy in October 2010 due to pelvic pain & an unusual uterus.

                    Comment


                    • #11
                      I have had the cortisone shots in my back 5 times without them ever helping. I have asthma too and have to take steroids every couple of months when my asthma acts up. But theres so many reasons not to have long-term steroid use. One thing that wife of Bob wrote is that he turns into a monster. Steroids can really make you go insane, I have seen it happen in patients when I worked as a RN. It makes you manicy and gives you terrible mood swings. It also affects your adrenal glands, blood sugars, causes swelling. And I have also thought that prednisone would be maybe would help IC but there is too many side effects. Also, when I have been on it for my asthma (which is usually 3 weeks) I dont think that it helps my IC anyway. Plus prednisone usually makes you sweat and pee a lot.

                      Comment


                      • #12
                        Prednisone; Cyclosporine

                        Prednisone is an immune suppressant.

                        For my relatively healthy dad, that (prednisone / resulting immune suppression) meant that when he happened to get exposed to a bronchitis virus, prednisone had stopped his immunity / immune system from working. No immunity, no stopping the bronchitis. That (and a scary-poor triage system at an underfunded ER at a hospital in Ontario) meant ventilator, ICU, and a very very close call that had him right on the line of living/dying.

                        An immune suppressant is a really strong drug, and because it leaves your body with little/no resources to fight, it needs to be considered very carefully.

                        I asked my pharmacist the other day about cyclosporine (for IC) and she was very hesitant, saying that it too is an immune suppressant.

                        I'd do anything to stop the pain and QoL-killing effects of IC. So I've been reading the forums with interest in terms of Cyclosporine as a potential solution. But the pharmacist's comment makes me very very reluctant to try it.

                        Do heavy research about this choice... immunity-suppression is serious stuff.
                        ______
                        Severe IC developed fairly quickly, autumn 2010.
                        So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

                        - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
                        - Methadone 9 ml/day
                        - Instillations:
                        - 40ml Kenalog (steroid for inflammation) 2 x per
                        week, along with rescue cocktail of heparin,
                        lidocaine, sodium bicarbonate
                        - 20ml Uracyst, monthly @ $100/per
                        - Depo lupron injections for endometriosis, monthly @ $88/per

                        Comment


                        • #13
                          I believe cyclosporine is a much stronger system immunosupressant. But yes, I agree either should be used with hesitancy. Certain conditions require the use of prednisone like RA and SLE and SJE but IC really doesn't. I was recently put on a 6 day pack for a rash I had and it didn't do anything for my bladder.

                          I have to say though while I was on plaquenil though it totally got rid of my IC symptoms. It isn't an immunosupressant but a DMARD and is often first line use for those autoimmune conditions above. If it doesn't work then they go to steroids. I asked my UG if any studies had been done on plaquenil and IC but he didn't think so. Since it worked so well it does have me wondering about the possibility of autoimmunity with IC. Unfortunately I developed an allergic reaction to it and had to go off of it.

                          Glad your Dad was ok, sounds like a very scarey situation!
                          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

                          Comment


                          • #14
                            cortisone/steroids/asthma meds

                            PLEASE READ AND TAKE INTO CAREFUL CONSIDERATION.

                            I have adrenal gland insufficiency, (the doctors thought I had cushings disease, and it is not) my levels of Cortisol are very low even while I am taking meds for it. Even with the cortisone stimulation tests I go through every other month they are low.
                            if it is not properly treated it can be fatal. All of this has been caused by taking Cortisone shots for my fibro. ANY type of steroids (even asthma meds with steroids) can cause your adrenal glands to stop producing cortisol. You need it for your body to function. Any one reading this I hope you take this seriously.
                            I was taking 4 to 8 shots a year (4 every 6 to 8 months) of Cortisone shots.
                            I have gained 80lbs I hurt severely, I can't stand more then 20 mins. Getting comfortable is not optional, and my pain meds don't even touch it.

                            If My dr told me there was a possibility that this could happen to me I would have never had any shots.
                            'The will of God will never take you where the Grace of God will not protect you.'

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