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  • It's a MIRACLE!

    I know this is a short lived miracle, but I HAD to tell you guys. I've been taking this prenisone since Thursday and I feel FANTASTIC! No rashes, and honestly my bladder is the best it's been since WAY before I was dx'd with IC. I cleaned yesterday and only felt mild discomfort afterward, but still paced myself. I have laundry and more cleaning to do today while I'm able to feel this way. I'm really upset that this is going to have to end since I'm only on a 10 day course of the prednisone, but IT IS A MIRACLE! Even my fibro pains (or Lupus pain, whatever pain it was) is gone, and I do mean GONE! I look at my pain meds and only take them so that I don't go into withdrawl!!!!!!!!

    Next week, when I'm done taking this round I'm sure it will all come back and I'll be hurting everywhere again, but this proves to me that I have an inflammatory disease and that the prednisone is helping it. Lupus/bladder/fibro? all in remission because of this? REALLY?
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

  • #2
    That is so great Sandy!!!:woohoo: Glad to hear that you are feeling so well. When do you go back to the doctor and hopefully get a full Rx so you can feel this good all the time?
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment


    • #3
      :woohoo: That is such good news. Is it possible that you will be able to continue to take it?
      Sharon

      Shopping??? Did someone mention shopping? I'll get my hat... ;-)

      Where I can be found most days.



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

      Link to the IC Diet:
      http://www.ic-network.com/diet/


      IC 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


      • #4
        It's prednisone that I'm taking and really, I'm not so sure I want to take it all the time. It has some very, VERY bad long term side effects. It has some short term ones too that I've already noticed. I have been totally obsessed with Cheesy Chex Mix. I mean that I CRAVE it and HAVE to have it and if I don't have it I run to the store to get it! It's so strange!

        The GREAT side effect is that I can get up and down from a squatting position without one moan or groan, I can carry my laundry up and down the stairs without getting winded and have to stop at the landing because the pain in my legs is so bad. I have slept several nights, all night long because my bladder is not getting me up to pee and I've not got any pain that is waking me up either.

        I'm worried about tapering my dose down, and this starts tomorrow. I'm already afraid that taking a lower dose will take away this blessed relief.

        I have learned that there is definately an autoimmune/inflammatory response going on in my body and this prednisone is taking care of it....so if I only get a week or so of relief from my pain, I do have an answer to the questions I had regarding inflammation/autoimmune.

        I wish I could take it longer, but I'm really afraid to. I was afraid to take it at all, even for a short term because it really can be a nasty drug.
        *IC-- Summer 2004; PFD--October 2005
        *Fibro--Fall 2000; CFS-- Fall 2000
        *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

        Total Abdominal Hysterectomy--adenomyosis--9\08

        04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

        Comment


        • #5
          Hey Sandy... that's so great

          I agree that prednisone is nasty to take long term... it can cause weight gain, it can mess with your blood sugar, it's associated with cataract development, it can cause adrenal insufficiency.... ewww. Short term, it's great, but long term.... questionable.

          I hope there is something else you can take though!!
          ****
          Jen

          *Diagnosed with severe IC in 2004
          *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
          *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
          *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

          **I am not a medical authority nor do I offer definitive medical advice. 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.

          Comment


          • #6
            Wonderful!

            Sandy....I'm soooo happy for you! How wonderful. You finally have a 'break' from the daily pain and suffering that has been hounding you for years! Thank God you can finally 'breathe in life'! Is that literally what it feels like? You've endured so much suffering which affects you physically and in your everyday life. Now, finally, you will be able to be the victor over your condition and a symbol for all others that there is hope!!

            Yea Sandy!!

            WOW!

            Danita
            Dani


            -Bladder surgery to correct reflux-'68
            -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
            -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
            -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
            -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
            PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
            -DX'd with IBS in 2000
            -Rhabdomyolysis in 2001 (has not returned)
            -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
            -DX'd with TMJ in 2000-wear splint
            -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
            -DX'd with Epilepsy -2000
            -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
            -DX'd with Fibromyalgia (2006)

            Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

            Comment


            • #7
              I'm not feeling like a victor yet. If I continue to feel this way even after stopping the prednisone, then I would claim victory. It does feel really great for the time being though!!! I now remember what it feels like to be pain free! I am also feeling VERY VERY hungry and that's a side effect I DONT need!
              *IC-- Summer 2004; PFD--October 2005
              *Fibro--Fall 2000; CFS-- Fall 2000
              *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

              Total Abdominal Hysterectomy--adenomyosis--9\08

              04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

              Comment


              • #8
                Glad your feeling good, but don't over do it.

                Comment


                • #9
                  I'm trying to behave and really pace myself. Yesterday I was able to vacuum the entire downstairs without stopping, and that in itself was a miracle! I think I'll stick to the laundry today and then tomorrow do some other tasks around here. I really don't want to ruin this feeling before it goes away on its own. So, I'll be good and not overdo it.

                  I was thinking how cool it would be for all the IC patients who have moderate to severe IC pain to participate in a prednisone trial. I'm so curious to see if it helps everyone. It's got me thinking that this all over body pain I feel is more from inflammation or it would not be so relieved by this med.....I've got LOTS of questions for the rheumatology visit coming up!
                  *IC-- Summer 2004; PFD--October 2005
                  *Fibro--Fall 2000; CFS-- Fall 2000
                  *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                  Total Abdominal Hysterectomy--adenomyosis--9\08

                  04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                  Comment


                  • #10
                    Sandy -- First off, congratulation on getting a break from feeling crappy. You deserce this break for sure!

                    Second, you keep writing down those question for the rheumotogist, and don't you let him/her out until you have all the information you need. A lot of doctors (as I'm sure we all know!) are not too keen to sit and talk to patients, bc. it messes with their schedules. Hang tough, girl!
                    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                    Wishing you happiness and good health, and all the best out of life.

                    Peace, Carolyn
                    ___________________________________________________

                    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                    On the Beach with IC

                    Comment


                    • #11


                      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


                      • #12
                        Sandy -- when I've taken prednisone for asthma or for out of control dermatographism, it has not helped my stupid bladder at all. It does WONDERS for everything except the bladder. Ugh. I wish it helped as much as it does for you.

                        And when I'm on it, I eat like mad too...
                        ****
                        Jen

                        *Diagnosed with severe IC in 2004
                        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                        **I am not a medical authority nor do I offer definitive medical advice. 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.

                        Comment


                        • #13
                          how wonderful, I hope you contiue to feel better
                          'The will of God will never take you where the Grace of God will not protect you.'

                          Comment


                          • #14
                            So Glad you are up and about!

                            Sandy,

                            So glad you are up and about! It must feel wonderful to get some things done!

                            I would be curious myself to try a Prednisone trial for other things.

                            Hope you continue to have a good day!

                            Kara
                            Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                            "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                            I also have some journals of my journeys, past and some present at:
                            http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                            Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                            Comment


                            • #15
                              So glad you are feeling better! :woohoo: Prednisone usually makes my bladder feel better too. Every once in a while it doesnt, but for the most part, it knocks out even the worst flare for me. Weird, huh? I am so glad that you finally are getting d/xed! Hugs, Amy

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