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Interstitial Cystitis Flare after Moderna vaccine

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  • Interstitial Cystitis Flare after Moderna vaccine

    Hello everybody,
    I've been suffering from Interstitial Cystitis for 15 years. I suffered greatly from both pain and urgency for years.

    Over the last six years, my doctors and I finally got my symptoms under control - I take Amitryprilin, follow a strict diet and have frequent instillations. This way I could finally lead a relatively normal life again for the last few years. The everyday pain was down to a 2-3, urgency almost on a normal level, flares were rare and short (a few days maximum) and always related to consuming trigger foods or sexual activity.

    I got vaccinated with Pfizer in the summer and had zero side symptoms apart from a sore arm and some tiredness.

    But two weeks ago I got the Moderna booster. And that same night, I woke up in hell. I had to pee every ten minutes and I was in excruciating pain in both my bladder and urethra. I went to my urologist after two days and he confirmed that I had no infection and told me to "take it easy for a few days". Which I did. I called in sick at work, I stayed in bed with my heating pad most of the time, I took baths and painkillers... And two weeks later, I'm still caught in the worst flare in over six years. I feel a constant urge and painful pressure on my bladder, I have a sharp, stabbing pain in my bladder and horrible burning in my urethra, and I'm absolutely gutted.

    I thought I had left this behind, and now I'm back where I started. I can't go to work again and I'm lying in bed with a heating pad most of the day. Walking is painful, standing up is painful, everything hurts. And I have to pee up to 40 times a day.

    My urologist (he's specialised in IC) eventually told me that he has heard from a few of his patients who have experienced flares after the Moderna vaccine and I'm livid - had I known this, I would never have gotten Moderna but had gone for the Pfizer vaccine as a booster instead.

    Has anyone here experienced the same?

    I don't know how to deal with this, it's been two weeks and it hasn't gotten any better so far.

  • #2
    I had Moderna for all three of my vaccinations --- I only had a sore arm as a result. I hope your flare will be on its way out soon.


    Donna

    P.S. to the IC Network.


    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
      Hi There--I was in remission for four years and then got my first Pfizer vaccine dose. Maybe it's a coincidence, but 2 days after that I was in the worst flare in years. My trusty Oxybutinin 10mg stopped working seemingly overnight and I was just mentally and physically NOT okay. I went to my Urogyn and he prescribed me a couple other meds, which have lasted for almost one year, but now I'm in the same boat as I was in March 2021 with my first dose.

      Comment


      • #4
        I'm sorry you are having problems. I have had all three Moderna vaccinations with no problem other than a sore arm. We lost a good friend to Covid --- I hope you have adequate immunity.

        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


        • #5
          April 14 - Male here. 4 Moderna shots. Never had noticeable IC pain from the first 3, just sore arm and 24 hours of body aches. I've been having intense relentless burning pain in urethra for nearly 2 months, but the timing doesn't necessarily match the shots. I was getting weekly Elmiron instillations for IC for a couple years. In early Feb, my urine was slightly cloudy after instill so I had the uro culture it, came back with a very slight infection (staph epidurmis). Was put on Macrobid for a week, then Omnicef for a week (unnecessarily since infection was cleared, but I reported pain). The pain didn't start until I was on the antibiotics. I've read that they can damage bladder lining (especially the Macrobid), so I assume same could be true of urethral lining. (I've seen male patient stories on other sites of urethral burning after Macrobid, btw.) PA thought I had a prostate infection, put me on Augmentin, but pain kept getting worse, so after 3 days I asked to go off them. I immediately started feeling better, but the pain came back in a few days after my next instillation. Urgent care tested urine & doesn't think I have prostate infection. Last Moderna shot was March 27, and like I said, the pain started when I took the antibiotics, which was before the shot. I skipped my last 2 instillations, thinking that they were irritating the urethra, but the burning pain won't go away. I have a dilemma - try the Elmiron instillations again & risk irritating urethra from catheter, or keep skipping them & continue with pain (which could be referred pain from bladder or prostate, but is definitely burning in urethra.) Pyridium doesn't seem to help, which indicates it may be urethral and not bladder pain, but can't tell for sure. Nurse thinks maybe the Elmiron won't help the urethra, just the bladder, but I don't know. Desperate for a solution! Any ideas?

          (I may also repost in a separate urethral topic not related to Covid shot to see if that helps. Thx)
          Last edited by GuyIC; 04-14-2022, 03:54 PM.

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