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  • Covid vaccine flare

    Hi everyone. I've had IC since 2009 and have been in remission since 2015 and came out of remission when I received my 2nd moderna Covid-19 vaccine, over a month ago. Are there any others out there that have experienced this? I'm currently take Elmiron (I do know the risks associated with this drug) rapaflo, allegra, lexapro. I'm so frustrated. I had a cystoscopy and hydro distention with rescue solution a week ago and had relief for about a week. I'm open to any advice. I have an appointment scheduled with my urologist in a few weeks, to discuss our next move.

    Thank you fellow IC friends 💗
    Michelle Rodriguez
    Diagnosed with IC in 2008 by cystoscopy and biopsy
    Pelvic floor disfunction, Recurrent yeast infections and bacterio vaginosis. Diagnosed with overactive bladder January 2012
    Currently taking:
    Elmiron 200mg twice a day
    Rapaflo 8mg
    Zyrtec, prelief
    Uribel as needed
    Vesicare as needed
    Have tried:
    Xanax, vesicare
    Sanctura (gave me insomnia)
    Celexa, wellbutrin
    Prestique
    Cystoprotek
    Aloe Vera pills
    D-mannose
    Bladder instills

  • #2
    Hello Shelly,

    Thanks for posting this. I was also wondering if vaccine can give you flare ups. Interesting... I haven't' gotten mine yet, so can't comment on that. But I have a question if you don't mind me asking - I am very new to IC, I have not been even formally diagnosed yet. Once you are in remission you don't have any more symptoms? And can eat anything you want? How does the IC remission look like? if you don't mind sharing...

    Thank you!!!
    kate

    Comment


    • #3
      I had my first Moderna vaccine in February and will have the second one this coming Sunday. I had very little side effects and none that had an effect on my bladder. I did have a sore arm and a slight headache but I am very high risk so glad I am able to have them.

      To answer your question --- most ICers will need to avoid some foods and drinks even in remission. Some can get away with eating and drinking everything, but I have seen posts by some who can get away with it for a long time, then have symptoms return. You might eventually be able to eat and drink most things, but I suggest using caution if you decide to do so.

      I hope you'll have a diagnosis soon.


      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
        Originally posted by kmonica View Post
        Hello Shelly,

        Thanks for posting this. I was also wondering if vaccine can give you flare ups. Interesting... I haven't' gotten mine yet, so can't comment on that. But I have a question if you don't mind me asking - I am very new to IC, I have not been even formally diagnosed yet. Once you are in remission you don't have any more symptoms? And can eat anything you want? How does the IC remission look like? if you don't mind sharing...

        Thank you!!!
        kate
        Hi Monica,

        Yes it wasn't until my 2nd dose of my vaccine that my IC flare started. It actually started that evening and like Donna, I also had a sore arm but also flu like symptoms. My IC had been in remission for some time. While in remission I was able to eat things outside of the IC diet and occasionally drink alcohol, with no affect to my bladder. I could live life without consistently thinking about my bladder. It's really wonderful. I've gone more than a handful of times where my remission can last for years. So there is hope. Try to get in to a see a urologist to talk about your symptoms and to get a diagnosis. They usually have to do a cystoscopy first to get a true diagnosis. Please reach out if you have anymore questions and like Donna said, follow the IC diet so your symptoms don't become worse.

        Michelle
        Michelle Rodriguez
        Diagnosed with IC in 2008 by cystoscopy and biopsy
        Pelvic floor disfunction, Recurrent yeast infections and bacterio vaginosis. Diagnosed with overactive bladder January 2012
        Currently taking:
        Elmiron 200mg twice a day
        Rapaflo 8mg
        Zyrtec, prelief
        Uribel as needed
        Vesicare as needed
        Have tried:
        Xanax, vesicare
        Sanctura (gave me insomnia)
        Celexa, wellbutrin
        Prestique
        Cystoprotek
        Aloe Vera pills
        D-mannose
        Bladder instills

        Comment


        • #5
          Thank you so much Shelly and Donna, much appreciate the inputs and happy to know there is hope out there! You're so lucky to be in remission! Thanks so much

          Comment


          • #6
            Hi all. I'm getting the J&J vaccine tomorrow and scared about upsetting the IC cart. I've only had intermittent flares over the past year, so I'm terrified this will rev things up. For the folks who said they got a flare, how long did it last? Is it still on-going? Any information would be appreciated.

            Comment


            • #7
              I had my second Moderna four days ago and the only side effect so far is a sore arm and feeling flushed --- it feels like I have a fever, but my thermometer says I don't --- so I'm assuming this is part of my vaccine reaction.

              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


              • #8
                Originally posted by Ginji9 View Post
                Hi all. I'm getting the J&J vaccine tomorrow and scared about upsetting the IC cart. I've only had intermittent flares over the past year, so I'm terrified this will rev things up. For the folks who said they got a flare, how long did it last? Is it still on-going? Any information would be appreciated.
                I'm sorry it has taken me so long to respond. My son was sick this week. I hope all is going well and you aren't having any side affects from your vaccine. Unfortunately I'm still in a flare but it does feel like it's starting to calm down a little bit. I'm hoping at some point it goes back into remission. I had an appointment with my urologist and he prescribed me amitriptyline and wants to see how I do on it. I'm also going to make an appointment with an an allergist to discuss mast cell activation syndrome since I've also had a history of breaking out in hives. I'm sure that has some correlation with my IC.
                Michelle Rodriguez
                Diagnosed with IC in 2008 by cystoscopy and biopsy
                Pelvic floor disfunction, Recurrent yeast infections and bacterio vaginosis. Diagnosed with overactive bladder January 2012
                Currently taking:
                Elmiron 200mg twice a day
                Rapaflo 8mg
                Zyrtec, prelief
                Uribel as needed
                Vesicare as needed
                Have tried:
                Xanax, vesicare
                Sanctura (gave me insomnia)
                Celexa, wellbutrin
                Prestique
                Cystoprotek
                Aloe Vera pills
                D-mannose
                Bladder instills

                Comment


                • #9
                  Thanks Shelly. I replied to this post, but don't see my message. Anyway, sorry to hear you are still flaring. I had my vaccine, no flare, but I did get a rash that started day 4. Keeping an eye on it to make sure it doesn't get worse. As for your flare, you might try some chamomile tea, since it has some of the same properties as hydrocortisone. I'm not a doctor, but I have used some herbal remedies that helped. Sending good vibes.

                  Comment

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