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  • Lower dose of prednisone not helping as much!

    I am so disappointed. Since I've cut my dose back from 60mg per day to 40 mg per day I'm not having the same relief I was having. I felt like I could almost conquer the world for those few days. Now that the dose is lower my body knows it, and is starting to hurt again. I feel it mostly in my joints, and in my bladder. I knew this would happen, but I had hoped it would last til I ran the entire 10 day course of the med.

    I AM still better than I was, there was only one way for that to go, and it was up! I felt so bad before, and then having that taste of feeling good with little to no pain was amazing. I just see the end of that coming like a freight train!
    *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
    Sorry you're starting to feel bad again, especially since you've been feeling so great. It's a real shame that prednisone has so many side effects, because you get this false sense of well-being when you're on a high dose, and then you crash when you have to wean yourself off the stuff. It's a real bummer, I know.

    Comment


    • #3
      I'm so sorry Sandy
      ****
      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


      • #4
        Sandy...I am sending you some hugs.
        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


        • #5
          Oh Geesh Sandy, have you mentioned it to your doctor? When I was on it for my colitis, in the beginning of being on it, the first time I stepped down, I had a return of symptoms, so she had me go back up for a bit then step down - but not so far. Like I was on 20 mg say, and then I was to drop to 10, well, I had a return of symptoms so I had to go back to 20 for a day or two, then step down to 15, etc. Eventually I weaned to 5mg as my last step down. I must have been resistant to it, lol, as I didn't get the "yippy!" feelings until I had been on it for few weeks!! Dang! *giggle*

          Hope you feel better soon!!!!!!!!!

          XOXO
          Hugs,
          Tracey
          How do you eat an elephant? One bite at a time...

          Harry arrived 2/23/09!



          *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.

          IC Diet Cheat Sheet:
          http://www.ic-network.com/diet/2009icdietlist.pdf



          Dx's:
          IC dx'd Nov 2004
          Lymphocytic Colitis dx'd July 2005
          Possible IBS
          Current IC Meds
          Vistaril 25mg in the evening
          Previous IC Meds taken:
          Cystoprotek - 2 caps 2x's a day
          Elmiron, 100mg 3x's a day
          Ditropan, 5 mg 3x's a day
          Others:
          Wellbutrin 150mg 2x's a day for Anxiety/IBS
          Pepcid 40mg a day for GERD
          Zytrec for Nasal Allergies
          Align Probiotic daily for IBS

          Comment


          • #6
            Have you let your doctor know? It may be, as Tracey suggested, that you need to reduce your dosage slower.


            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


            • #7
              I have a call into the doctor now. They were supposed to call me with my labs days ago, and I still need the referral to the rheumatologist. I am losing my patience with them, but slowed the tapering down a little bit myself by adding 10 extra mg a day until they call me back. I know he's going to say yes, but I need to have another rx called in.

              It's just a slap in the face...I felt great, and today I'm feeling that downhill slide, BUT, it is a bit better since I took it upon myself to increase my dose. Guess I'll make another phone call to their office!
              *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
                Sorry your happy days didn't last longer. That slapped in the face feeling is no fun at all. Hope you get something so you can conquer the world again.

                Comment


                • #9
                  Hey Sandy, I know how you feel! I remember when I stepped down and my symptoms from the colitis came back, I was so defeated feeling, lol. Thank goodness it was just that my body needed the med a little bit longer....

                  XOXO
                  Hugs,
                  Tracey
                  How do you eat an elephant? One bite at a time...

                  Harry arrived 2/23/09!



                  *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.

                  IC Diet Cheat Sheet:
                  http://www.ic-network.com/diet/2009icdietlist.pdf



                  Dx's:
                  IC dx'd Nov 2004
                  Lymphocytic Colitis dx'd July 2005
                  Possible IBS
                  Current IC Meds
                  Vistaril 25mg in the evening
                  Previous IC Meds taken:
                  Cystoprotek - 2 caps 2x's a day
                  Elmiron, 100mg 3x's a day
                  Ditropan, 5 mg 3x's a day
                  Others:
                  Wellbutrin 150mg 2x's a day for Anxiety/IBS
                  Pepcid 40mg a day for GERD
                  Zytrec for Nasal Allergies
                  Align Probiotic daily for IBS

                  Comment


                  • #10
                    Sandy...How are you doing today?
                    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


                    • #11
                      Originally posted by SharonA
                      Sandy...How are you doing today?
                      Not too bad because I took it upon myself to up my dose to a happy medium of 50mg per day. I still have not heard from my doctor and I'm really quite angry. I have enough to last the weekend taking 50 mg per day then I'll have to have a refill on Monday to either ween back or continue at this dose. He's supposed to have a nurse set me up with the rheumatologist too, and I've heard NOTHING from them. I do, however, have a head CT of my sinuses on Monday. At least they didn't sit on everything. Guess it's flu season or something?!

                      Thanks so much for asking! Now, if I could just quit eating.........
                      *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


                      • #12
                        Mmmmmm, eating, reminds me - almost dinner time! Oh thanks Sandy, you have now reminded me of the sinful cupcakes I made Jer for Valentine's Day...they are calling my name...... Traaaaaaaaaaceeeeeeeeeeeeey.....
                        Hugs,
                        Tracey
                        How do you eat an elephant? One bite at a time...

                        Harry arrived 2/23/09!



                        *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.

                        IC Diet Cheat Sheet:
                        http://www.ic-network.com/diet/2009icdietlist.pdf



                        Dx's:
                        IC dx'd Nov 2004
                        Lymphocytic Colitis dx'd July 2005
                        Possible IBS
                        Current IC Meds
                        Vistaril 25mg in the evening
                        Previous IC Meds taken:
                        Cystoprotek - 2 caps 2x's a day
                        Elmiron, 100mg 3x's a day
                        Ditropan, 5 mg 3x's a day
                        Others:
                        Wellbutrin 150mg 2x's a day for Anxiety/IBS
                        Pepcid 40mg a day for GERD
                        Zytrec for Nasal Allergies
                        Align Probiotic daily for IBS

                        Comment


                        • #13
                          Sandy, just make sure you don't run out - you will feel absolutely horrible if you have to quit cold turkey.

                          Comment

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