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STERIODS STERIODS STERIODS!!!! Saved me!

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  • STERIODS STERIODS STERIODS!!!! Saved me!

    I was diagnosed with IC in 2008. At the time I lived in Southern California. I couldn't find any urologist to help me. All I got was "Change your diet"! Luckily I did find a pain management doctor to help me at least get through my days taking care of an infant. In March of 2010 I moved back to my home town, St. Louis, and immediately looked for a pain management doctor. She knew of a urologist here that specialized in my condition and sent me to him. The first visit with Dr. Carl Klutke, on a Thursday, he looked into my bladder and told me he could fix me. I couldn't believe it! What! After 2 years of dealing with this horrible pain it only took a 5 minute doctor visit to find out someone could help me. I was scheduled for surgery that following Monday. Right, the following Monday! Dr. Klutke went into my bladder and shot steroids all over it. It appears that I also had Hunter's Ulcers. I woke up in no pain! NO PAIN! It was so surreal! I was beginning to except a life of pain but in an instant it seemed in time I was healed. He did tell me that it is a possibility that the pain could come back in a year or two but I am thinking optimistically. The worst part was detoxing from the pain meds. It took a month! Now I know how I crack head feels!! I never want to be on pain meds again and because of Dr. Klutke I never will. He can do the procedure as many times as I need it! So far so good! I feel like a new woman!!! Look him up on the internet. Dr. Carl Klutke

  • #2
    Thats awesome, I am so happy for you! I posted a question on oral steroids before but they have so many side effects. Steroids right into the site make sense and I hope it really does last a couple of years. I had steroid shots into my hips for bursitis but was told it would only last a few months, I wonder what the difference is and how those dang ulcers got there in the first place!!! If someone could only figure that out we could maybe prevent them.

    P.S. Just so you know you posted your thread twice.
    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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    • #3
      I hope you continue to feel good.


      Donna
      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
        Thanks!

        Thanks ladies. So far so good. The only effect from the steroids that I can see is my cheeks are a little chubbier than normal. But I will take chubby checks over pain any day!!! Hope you all find relief also.

        Warmest Regards,
        Paula

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        • #5
          Hi,

          I'm curious what did the doctor shoot the steroids into your bladder with? Was it a needle?
          Last edited by vanilla; 02-14-2011, 10:22 AM. Reason: misspelling

          Comment


          • #6
            Good for you, don't know how steroids directly into an organ work. You will get chubby "cheeks" LOL, steroids will cause that no matter how you get them, but if you are out of pain and feeling better, GOOD FOR YOU. Hope you asked the doc about all side effects and long term effects. If this appears to be a safe treatment, even short term, please keep everyone informed on how you are doing, how often, etc. And watch your BP, fluid retention and all of that stuff that goes with steroids. Really hope it works for you for a long, long time. Thanks for the info, interesting.

            Comment


            • #7
              Would steroids in a bladder cocktail cause chubby cheeks? I recently started with a new formula in my instillation, and I thought I was imagining my face was swelling. But now, I'm not so sure. I don't mean to sound vain, but really I don't want to change the shape of my face. I assumed intravesically applied drugs would bypass all the nasty side effects.

              Comment


              • #8
                I would think that most of the steroids instilled in the bladder would not be absorbed and just have a local effect, but I suppose some could be absorbed sytemically and cause face swelling.

                Suzanne

                Comment


                • #9
                  St louis

                  Im so glad that you shared this information. I have been in chronic pain for 12 years now. Nothing seems to help al that much. I take way to many controlled substances, and I am scared of their long term affect on my health. I have been with KU for 6 years, and we have tried everything including inter stem transplant. My therapist, had suggested several months back that I go to see a specialist at the Barnes and Jewish Hospital. Today I finally called and have an appt on March 17th. The good thing is that its only a 4 hour drive instead of a 10 or 12 hour drive. The worst part is callin your uro that I've had for 6 years and saying I want my medical records sent somewhere else. I told him 6 months ago I wanted a referral to the Mayo and have never heard another word about it.I believe its time for me to move on and believe that there is still hope out there. That this cant be.... Yes im still in denial i guess. There has to be some kind of relief out there. That a person should not have to suffer this way. That this so inhumane to live in pain every single day of your life.... Sorry to carry on an on.... But thank you for your post
                  Tracey Babbitt DX 2005

                  Comment


                  • #10
                    Thank you for your reply suzanne. I'll run it by my doctor next week.

                    Tracy - I'm glad your moving on, and I hope your new doctors are willing to do everything they can for you.

                    Comment


                    • #11
                      pdssmith0603

                      do u still have urgency and frequency? or is that all gone too? i was suppose to get a bladder distension this month under anesthesia with marcaine dmso and some steroids. I wonder if its the same stuff. did u just have steroids or a mixture.
                      Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

                      I have moderate-severe IC

                      Currently stopped taking all medications due to pregnancy

                      Comment


                      • #12
                        Tracey any good Doctor should be open to a "second opinion" Mine not only agreed but said "let me know which Doctor and I will send everything I have on records & tests I have on you" This is common practice. Don't feel bad. You are looking for help and a second opinion may be needed. Often when the new Doctor's office request the records it does not cost you anything. They just fax over the files. Go girl. Hugs, Ziggy

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