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After my Rheumy visit yesterday......more bad news!

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  • #1

    After my Rheumy visit yesterday......more bad news!

    My dr. appt was yesterday afternoon with the Rhuematologist at 3:45…we didn’t get into see the dr. till 5:30!!!!!!! He was nicer yesterday than the previous visit….So that was a plus for him! He said my blood work came back fine (it didn’t show Polymyalgia Rhuematica) BUT he says I have it. He said, “Like IC you can’t always go by tests alone you have to go by symptoms and what meds work to improve it”. Then too….for the past 48 hrs I’ve been having horrendous jaw pain…..both sides of my jaw where the hinges are. That is another problem called Giant Cell ateritis (not arthritis). This is potentially a much more serious condition and some time arises after the onset of PMR. It can cause artery swelling in the brain, blockages and stroke….what wonderful news huh?? SOOO He put me on a low dose of steroids. He said IF this helps with the PMR symptoms that’s great….if not he’ll try a higher dose…..but IF the Giant Cell problem gets worse….then I have to be on 65mg of steroids to conquer that! That is so damn scary! I don’t want to be on that much steroids and have a barrel shape and risk glaucoma and all kinds of other major health problems…….gees are we all doomed because of IC causing all these other problems??
    My bone density test came back good as did my levels for vitamin D C B12 etc……..so I was happy with that.
    The dr. wants me to be off work for 2 weeks to rest and recoup and see how this problem goes and how the meds react etc… So I called into work last night and dropped the news on them that I’d be out till the 23rd. Guess they took it ok.
    I found out that this dr. IS a pain management dr. also so that is another plus for him. He had a totally different personality this time. I guess he was just having a very bad day at my last appt. Mike was impressed with him this time also.
    I sure hope these steriods work for me........at the moment they are keeping me wide awake......even with taking the Lunesta and Elavil! It's 4am......been awake since 1am......Y'all take care! Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:
    Tags: None
    • #2
      Roxie I'm so sorry to hear about the new diagnois but you know what is going on then you can start treating it. I will and keep my fingers crossed that the low dose of the steriods are all that you need. You have problems with taking steriods in addition to the normal side effects don't you? All of these health problems are so frustrating! I hope that you start to feel better soon and the time off work will be just what you need to start to feel better. I took off for the rest of the week after my hydro just to rest up so you def need that time off.
      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
          HI Christine!
          Thanks for your thoughts and prayers.
          Yes I shouldn't take steriods because of my Barrett's Esophagus but looks like I'm going to have to try to take it for now. I hope I can continue on the low dose with out side effects.
          I do need this time off. I'm completely exhausted and SO tired of being in pain day in and day out.
          I hope you have a great painfree day! Roxie

          Double Spinal Cord Stimulator surgery 8/09
          Unsuccessful MiniArc sling surgery 12/07
          Dx'd Hypothyroid
          Dx'd Chronic Axonal Neuropathy & Myopathy
          June 2007
          Dx'd IC May 2006 (after suffering for 25+ yrs!)
          First Cysto 1979
          First Hydro 1981 (Many treatments since then!)
          Collagin"Durasphere" injections for urethra
          Gall bladder surgery Aug. 2004
          Gastric Bypass Dec. 2004
          Dx'd: Barrett's Esphogus July 2004
          Dx'd: Vaginal Atrophy 2005
          Bladder surgery 2000
          Dx'd: IBS 2000
          Hysterectomy (fibroids) 1999
          Laminectomy 1989
          Dx'd: Degerative Disk Disorder 1989

          For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
          I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

            Comment

            • #4
              Oh geesh! I am with Christine - I too will keep fingers crossed that the low-dose steroids do the trick!! I was on them for about 4 months a year and half ago, I just thought that 6am was a GREAT time to get up, ugh. Had it started getting any earlier in my wake up times, I'd have never gone to bed eventually!

              I too hope the time off work is just what you need to rest and get your game back! What a great opportunity if you have some small projects to work on for fun and just for you! Always a good idea to keep the brain occupied on something else, while letting the body do it's thing...

              Hugs,
              Tracey
              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

                • #5
                  I don't have anything to add, but I'm with Christine and Tracey in sending well wishes.

                  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

                    • #6
                      {{{{Roxie}}}} Just sounds like no fun at all.... Have you checked around online to see if there is a message board for these conditions? The ICN has been so helpful to so many of us, giving us info. we never got from our doctors, so I wondered if there is one for your newer diagbnoses.
                      Kim

                      Diagnosed August 2001

                      Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

                      Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                      I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                      *****************************

                      “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                      “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                        Comment

                        • #7
                          HI Thanks for all the thoughtful wishes. I have my fingers crossed that the steriods do help cause I'm in a lot of pain at the moment. I just called the dr. to see if there's a pain patch he could prescribe for me since I have trouble taking pills with my Barrett's and IC problems.
                          I found a small online forum for Polymyalgia and the ladies there are very nice. It's based in Canada. They have given me some helpful ideas for dealing with this problem. Thanks again.....Roxie

                          Double Spinal Cord Stimulator surgery 8/09
                          Unsuccessful MiniArc sling surgery 12/07
                          Dx'd Hypothyroid
                          Dx'd Chronic Axonal Neuropathy & Myopathy
                          June 2007
                          Dx'd IC May 2006 (after suffering for 25+ yrs!)
                          First Cysto 1979
                          First Hydro 1981 (Many treatments since then!)
                          Collagin"Durasphere" injections for urethra
                          Gall bladder surgery Aug. 2004
                          Gastric Bypass Dec. 2004
                          Dx'd: Barrett's Esphogus July 2004
                          Dx'd: Vaginal Atrophy 2005
                          Bladder surgery 2000
                          Dx'd: IBS 2000
                          Hysterectomy (fibroids) 1999
                          Laminectomy 1989
                          Dx'd: Degerative Disk Disorder 1989

                          For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                          I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                            Comment

                            • #8
                              Glad to hear your appointment went well. I hate predinosone, I have to take it occasionally for my allergies/asthma. But it helps those problems. Good luck and talk to you soon.
                              Kate in NH
                              I have numerous health problems, including endometriosis, IC, pudendal neuralgia, pelvic floor dysfunction, pelvic dyssnergia.
                              My meds:
                              Seasonale
                              Atarax
                              Zanaflex
                              Elavil
                              Lactalose

                                Comment

                                • #9
                                  HI Kate,
                                  So far so good on the Prednisone. My jaws are feeling better (they were hurting because of the Giant Cell Arteritis. I think my aching is starting to feel better too. I go back to the Rheumatologist next Wed. I hope to feel a lot better by then and then he'll lower the steriods down slowly. I have my fingers crossed. Thanks! Roxie

                                  Double Spinal Cord Stimulator surgery 8/09
                                  Unsuccessful MiniArc sling surgery 12/07
                                  Dx'd Hypothyroid
                                  Dx'd Chronic Axonal Neuropathy & Myopathy
                                  June 2007
                                  Dx'd IC May 2006 (after suffering for 25+ yrs!)
                                  First Cysto 1979
                                  First Hydro 1981 (Many treatments since then!)
                                  Collagin"Durasphere" injections for urethra
                                  Gall bladder surgery Aug. 2004
                                  Gastric Bypass Dec. 2004
                                  Dx'd: Barrett's Esphogus July 2004
                                  Dx'd: Vaginal Atrophy 2005
                                  Bladder surgery 2000
                                  Dx'd: IBS 2000
                                  Hysterectomy (fibroids) 1999
                                  Laminectomy 1989
                                  Dx'd: Degerative Disk Disorder 1989

                                  For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                                  I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                                    Comment

                                    • #10
                                      Roxie,
                                      My heart goes out to you.. It seems like we all get other problems with our health..Like IC isnt enough..I am just sorry you are having to go through all this(((((((((hugs)))))))))))))
                                      Hugs
                                      Ronda

                                      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


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

                                      Diet Reference Sheet:
                                      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                                      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                                      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                                      Meds I have Tried:
                                      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                                      Lexapro< Bad reaction to this med!
                                      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                                      Dx With IC in Nov 2006 with Hydro/Cysto
                                      Hydro/Cysto Caused Bladder to Rupture.

                                      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


                                      ICN 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
                                          Hi. I was just diagnosed last month after 4yrs of suffering. Although I have had medical problems all my life. Recurrent bladder and kidney infections, kidney stones and malignant melanoma. My question is That I have to take pain med. and I'm wonder if they aggrevate my ic? Is it better to use a patch? I'm sooo sick of all these pills!!!
                                          Thanx.

                                            Comment

                                            • #12
                                              Roxie: Sending warm wishes and hoping you are on the road to recovery.

                                                Comment

                                                • #13
                                                  Thank you Mary! Same to you! Happy Easter.....Roxie

                                                  Double Spinal Cord Stimulator surgery 8/09
                                                  Unsuccessful MiniArc sling surgery 12/07
                                                  Dx'd Hypothyroid
                                                  Dx'd Chronic Axonal Neuropathy & Myopathy
                                                  June 2007
                                                  Dx'd IC May 2006 (after suffering for 25+ yrs!)
                                                  First Cysto 1979
                                                  First Hydro 1981 (Many treatments since then!)
                                                  Collagin"Durasphere" injections for urethra
                                                  Gall bladder surgery Aug. 2004
                                                  Gastric Bypass Dec. 2004
                                                  Dx'd: Barrett's Esphogus July 2004
                                                  Dx'd: Vaginal Atrophy 2005
                                                  Bladder surgery 2000
                                                  Dx'd: IBS 2000
                                                  Hysterectomy (fibroids) 1999
                                                  Laminectomy 1989
                                                  Dx'd: Degerative Disk Disorder 1989

                                                  For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                                                  I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                                                    Comment

                                                    • #14
                                                      please email [email protected]

                                                      Originally posted by Roxie2007
                                                      My dr. appt was yesterday afternoon with the Rhuematologist at 3:45…we didn’t get into see the dr. till 5:30!!!!!!! He was nicer yesterday than the previous visit….So that was a plus for him! He said my blood work came back fine (it didn’t show Polymyalgia Rhuematica) BUT he says I have it. He said, “Like IC you can’t always go by tests alone you have to go by symptoms and what meds work to improve it”. Then too….for the past 48 hrs I’ve been having horrendous jaw pain…..both sides of my jaw where the hinges are. That is another problem called Giant Cell ateritis (not arthritis). This is potentially a much more serious condition and some time arises after the onset of PMR. It can cause artery swelling in the brain, blockages and stroke….what wonderful news huh?? SOOO He put me on a low dose of steroids. He said IF this helps with the PMR symptoms that’s great….if not he’ll try a higher dose…..but IF the Giant Cell problem gets worse….then I have to be on 65mg of steroids to conquer that! That is so damn scary! I don’t want to be on that much steroids and have a barrel shape and risk glaucoma and all kinds of other major health problems…….gees are we all doomed because of IC causing all these other problems??
                                                      My bone density test came back good as did my levels for vitamin D C B12 etc……..so I was happy with that.
                                                      The dr. wants me to be off work for 2 weeks to rest and recoup and see how this problem goes and how the meds react etc… So I called into work last night and dropped the news on them that I’d be out till the 23rd. Guess they took it ok.
                                                      I found out that this dr. IS a pain management dr. also so that is another plus for him. He had a totally different personality this time. I guess he was just having a very bad day at my last appt. Mike was impressed with him this time also.
                                                      I sure hope these steriods work for me........at the moment they are keeping me wide awake......even with taking the Lunesta and Elavil! It's 4am......been awake since 1am......Y'all take care! Roxie
                                                      sportydiamond_2

                                                        Comment

                                                        • #15
                                                          So sorry Roxie that you are having to deal with another disease. You really have been through it all. I just want you to know that you are in my prayers and please take off as much time as you need to get to feeling better.
                                                          Miss Bessie

                                                          Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                                                          Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                                                          Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

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