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  • #1

    Lupus and IC

    Hi Donna,
    Thanx for responding. I was just wondering if you are taking medications for your bladder in general. My Dr. is away until the 29th but his nurse suggested taking the prednisone with urised. Up until now I have been able to avoid bladder meds sticking to the diet and if I get into trouble I use Tums and Baking soda. I know we are all different but I hate the thought of an IC flare so I am always so careful about what goes in mouth.
    Thanx for any help you can give me.
    MaryEllen
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  • #2
    I don't take any IC medications on a regular basis. I find that if I watch my diet closely, have a DMSO treatment once a month, and hydros when the symptoms won't go away, I do very well.

    I have taken urised before and it is very soothing. I do have hyoscyamine, pyridium, and pain medications on hand "just in case."

    I have a friend who has lupus. She doesn't have IC. She does very well and works full time out of her home. She's a really nice person and I'd be happy to put you in touch with her if you'd like.

    Warm hugs,
    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

    • #3
      Still learning my way around these boards. I have been watching and reading for a year now but not comfortable enough to step in. Thank you Donna for offering to put me in touch with your friend with Lupus. My big problem with the Lupus is the IC and medications. Several of the medications I have tried for the Lupus flare up the bladder and they are drugs they want you on long term. I would say for now I know what I need to do to feel better for the Lupus but the IC flares stop me from being able to take the meds. This frustrates me and my rheumatologist who doesn't understand IC and the horrible pain etc. associated with a flare. I really do appreciate the offer though. Not sure who or what I need to do at this time. I have noticed that you are always there for other people with a word of support or some helpful ideas. I do appreciate your responding.
      Thanks again,
      MaryEllen

      Comment

      • #4
        Hello, I might have lupus, I feel alone. I don't know what to do..and I dislike the wait to find out anything. I'm doing dmso treatment with my ic. I'm suppost to have my second but i may have a uti or a flare, and my period is suppost to start soon...grr it rains it pours like there is no tomorrow..grr
        Kiyoka

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        • #5
          My friend with lupus has to follow a diet that avoids some foods and wears sunscreen; she does very well and works full time. I hope you don't have lupus --- it sounds scary --- but just remember that there are now some very effective treatment options and most people with it have success in keeping it under control.

          Sending warm healing thoughts,
          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
            Hi MaryEllen
            I have lupus and IC....not a lot of fun...but you can survive

            I find that the prednisone and plaquenil I'm taking for the lupus, does help the ic (don't know why?) ...are you taking any specific medication...? When you get past the flare ups, things do settle down. You could be getting the ic flare ups coincidentally to taking the medication, if you know what I mean. One thing, is to get yourself a good urologist. My rheumatologist who is treating my lupus is in contact with my urologist, and together they and I plan my treatment. You'll find something that works!
            Chin up,
            Lou

            Comment

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