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Paquenil for IC

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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; Yesterday, 02:57 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

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