(From The Editor: A case study is not a double blind placebo controlled study that establishes that a therapy is beneficial and safe. It is a report from a medical team that describes a unique patient case. Case studies help to build data for new treatments or to share new concerns. A few years ago, researchers at the Emory Eye Center released six case studies that helped to establish that an IC medication could cause retinal disease. And, last year, a remarkable case study was released of a woman diagnosed with Hunner’s lesions who was “cured” after her medical team discovered that her uterus was twisted out of position (aka posterior fornix syndrome). Case studies can instruct both clinicians and patients about unusual presentations and, in this case, about a new treatment option. Clearly, more research is needed before more claims can be made but we hope that this gives our readers home and encouragement.)
A 70 Year Old Woman Finds Relief After NAC Therapy
A remarkable case study was published late last year of a 70 year old woman with a 26 year history of IC/BPS who has achieved a complete remission of her symptoms with IV infusions of N-acetylcysteine (NAC), a therapy that is currently being used for the treatment of asthma, ulcerative colitis and chronic bronchitis. NAC provides a strong, systemic anti-inflammatory effect with few side effects.
At a very early age, this patient had a history of urinary frequency and UTI. After an accident that fractured her spine and injured her bladder, she developed chronic bladder and pelvic pain, urinary frequency, urgency and nocturia. In 1994, she was formally diagnosed with IC/BPS and chose, initially, to pursue holistic treatments such as a vegan diet, acupuncture and massage.
In 2019, she was referred to the Maharaj Institute of Immune Regenerative Medicine (Boynton Beach, Florida), where she presented with mild incontinence, difficulty starting her urine stream and frequent, painful urination. In addition to confirming her diagnosis of IC, they found that her pro-inflammatory plasma cytokines (IL-1B, TNF, IL-10, IL-8, IL-6) were significantly elevated suggesting that significant inflammation was present. The patient again refused traditional IC treatments (pentosan, amitryptiline, cimetidine, cyclosporine, hydroxyzine) due to the risk of side effects.
Less than a year later, the patient returned with more severe symptoms and agreed to try low dose NAC therapy of weekly infusions. She experienced remarkable results. After five treatments, she reported reduced symptoms and elected to stop, however her urgency did return six weeks later. She resumed NAC IV infusions and after three additional treatments, her symptoms again resolved with her sharing that this was the first time she was completely pain free. She eventually received 16 NAC IV infusions with no associated side effects. Remarkably, her plasma cytokine levels also showed significant improvement. At the time of publication, five months after completion, the patient continued to be symptom free for the first time in decades.
NAC has been studied in number of IC animal studies where it was found to reduce inflammation, restore the integrity of the urothelium and reversing the progression of fibrosis resulting in the improvement of urinary symptoms. However, these early studies did reveal that high doses of NAC could cause harm by increasing inflammation and oxidative stress. The authors emphasize appropriate dosing most be utilized, based upon treatment duration, dosages and frequency of treatment. This patient received 6000mg per IV infusion cycle though they note that this should not be a universal standard. Interestingly, NAC has been used to treat the cytokine storm of COVID-19 with a dosing regimen of 30,000mg in 3 doses over 24 hours with encouraging results.
They conclude that NAC IV infusion therapy may be worth exploring in patients who have been unresponsive to traditional IC therapies.
We would love to hear from any IC patients who have explored this therapy. Did it help you? Did you experience any side effects? What was the cost of treatment? Please share your story with Jill at: jill (a) ic-network.com.
(This study does not suggest or encourage the use of oral NAC supplements.)
(1) Maharaj d, et al. Clinical Remission Using Personalized Low-Dose Intravenous Infusions of N-acetylcysteine with Minimal Toxicities for IC/BPS. Journal of Personalized Medicine. 2021, 11,342 (Full article Available At No Charge)