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  • Paquenil for IC

    I am diagnosed with IC. I have been keeping a journal of flares and symptoms since 2013. I have tried many of the same prescription treatments that perhaps many in the forum have tried (amitriptyline, hydroxyzine, hyocyamine, uribel, flexeril, baclofen, and probably more), to no avail. Either had bad side effects or they weren’t effective or both.

    I have also done procedure and therapies, pelvic floor therapy, TENS unit, cystoscopy with hydrodistention.

    I have also tried many homeopathic remedies and OTC meds, eating clean gluten free AIP diet, Desert Harvest aloe vera, Cystoprotek, Bladder Ease, Epsom salts baths, baking soda and water, alkaline diet, essential oils, pumpkin seed oil, pyridium (Phenazopyridine), marshmallow root tea infusions, chamomile tea, etc.

    I have gone to countless urologists and urogynecologists, some who practice at renowned hospital systems whose specialities included IC.

    I had my silver fillings removed in an effort to detoxify my body.

    Some of the homeopathic remedies and OTC meds (pyridium) have provided some relief.

    I wish to tell my fellow IC sufferers about a treatment I began on Dec 7, 2020. It’s paquenil (also known as hydroxychloriquine). I have been taking 200 mg a day. My urologist prescribed it as this drug has been known to help people with autoimmune disease (lupus, rheumatoid arthritis). On Dec 15, 2020, on 9th day of taking it, I had my first good IC day in many months. I had a fleeting moderate flare on Dec 16 and a fleeting moderate flare on Dec 17. Since Dec 17, I have had all good days. 100% good. Could this be a remission that may have happened anyway? I was cautiously optimistic. It’s Jan 2 today, and still my days have been totally free of IC symptoms. My life is changed. This is a game changer.

    I am angry that this inexpensive, safer-than-Tylenol drug, isn’t mentioned by doctors for treating IC. The other drugs thrown at us are used off-label, and most of them are more dangerous than paquenil. Invasive procedures are tried. The only FDA approved drug for IC, Elmiron, can lead to irreversible eye damage and hair loss, yet it is tried with IC patients, still on the market with its questionable safety record. Paquenil has a 65 year remarkable safety profile.

    I am just angry. Time will tell if I continue to do well on it. Everyone is different, I know. What works for one may not work for another. Everyone must choose what is best for them under consultation with their doctors. But WHY have I been suffering for 15 years or more with IC and this drug is ignored as something worth trying?? Trial and error is how doctors work with IC patients. Paquenil deserves to be considered as a treatment.

    I have a new lease on life 🙂

    Researchers, where have you been?
    Last edited by LinKay; 01-24-2021, 01:57 AM.

  • #2
    I'm so glad you are seeing good days! Please keep us posted on how you're doing.


    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
      LinKay - what happened to your treatment? Did it keep working. ICNDonna - do you ever message anyone if a treatment sounds reasonable and successful. So many people report something that sounds good and then they disappear!
      I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

      Comment


      • #4
        I am still on hydroxychloriquine (paquenil). For the first couple months, I was convinced it helped a lot, but now I can’t be certain because I have had many problems with IC and UTIs in the past few months. I am not flare free. I have Sjogren’s too so didn’t want to stop the paquenil. I don’t have any side effects, and that is something.

        I wish I could report with certainty that paquenil helps IC, but I can’t at this point.

        I did come to the conclusion that I can’t take hydrocordone for pelvic pain and pressure anymore (I react to it…almost faint and my blood pressure goes down). I don’t want to continue to take pyridium, as it can cause blood cancer. So I recently applied for a medical marijuana card. CBD/CBG (available in stores in most states without mm card) taken consistently every day is helping. Also, microdosing of CBD/ THC edibles helps. I am taking these products instead of hydrocordone and pyridium, along with continued paquenil. I’m managing better than I have for months.

        Thanks for asking.
        Last edited by LinKay; 09-10-2021, 02:48 PM.

        Comment


        • #5
          Originally posted by purpleviolet View Post
          LinKay - what happened to your treatment? Did it keep working. ICNDonna - do you ever message anyone if a treatment sounds reasonable and successful. So many people report something that sounds good and then they disappear!
          I don't contact members privately unless there is a problem with a post. I prefer to share information and respond to questions on the forums, especially if it could be helpful to others.

          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
            Originally posted by LinKay View Post
            I am still on hydroxychloriquine (paquenil). For the first couple months, I was convinced it helped a lot, but now I can’t be certain because I have had many problems with IC and UTIs in the past few months. I am not flare free. I have Sjogren’s too so didn’t want to stop the paquenil). I don’t have any side effects, and that is something.

            I wish I could report with certainty that paquenil helps IC, but I can’t at this point.

            I did come to the conclusion that I can’t take hydrocordone for pelvic pain and pressure anymore (I react to it…almost faint and my blood pressure goes down). I don’t want to continue to take pyridium, as it can cause blood cancer. So I recently applied for a medical marijuana card. CBD/CBG (available in stores in most states without mm card) taken consistently every day is helping. Also, microdosing of CBD/ THC edibles helps. I am taking these products instead of hydrocordone and pyridium, along with continued paquenil. I’m managing better than I have for months.

            Thanks for asking.
            Thank you for the update. I'm glad you are doing better.

            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
              LinKay - Thank you for your reply. I'm glad you are finding some relief with new therapies. A doctor recently suggested I try CBD:THC 1:1 ratio for sleep and pain but I am very cautious. I'm in a location where it is legal to buy these various combinations. I recently was in a big flare and had to rely more on regualar medication and so I would never mix medications with someting like marijuana unless I got the ok from a pharmacist perhaps. Anyway, as soon as I am over flare, I will take baby steps with my edibles starting with a higher ratio of CBD to THC and see how I do. Donna, I understand completely.
              I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

              Comment


              • #8
                I'd like to try CBD, but not until I have a chance to ask my doctor since I'm on a lot of other medications. Let me know how you do with it.

                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

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