Every year, we take stock of our journey. What have we gained? What have we lost? What are the critical lessons that we’ve learned from the past year that have helped us to grow. The goal, of course, is to walk into the New Year stronger, more empowered and more active. Here is a short list of the highlights and low lights of 2019!
🙁 LiRIS Lost But Not Forgotten
The biggest loss of 2019 was LiRIS, the first treatment in history to heal Hunner’s lesions after just two weeks of treatment. Allergan Pharmaceuticals offered no explanation as to why they “deprioritized” this medical device just as they were finishing up clinical trials. We reached out to Allergan for additional information but received no response. In general, companies who deprioritize a project have decided to invest their funds elsewhere and the IC marketshare is significantly smaller than the cosmetic, vision or menopause market that Allergan. We have also not seen the latest round of research results though patients and researchers throughout the country reported that lesions either disappeared, got smaller and/or a fewer quantity after LiRIS therapy. If you are a patient who has benefited from LiRIS therapy, we hope that you will share your story and, ideally, ask Allergan to reconsider this decision.
🙂 Compassionate Doctors
It is an undeniable fact that the best and brightest clinicians in the world for IC and pelvic pain have dedicated their careers to our care. None shines brighter than Dr. Robert Evans (Wake Forest University) who, for the fifth year in a row, was voted physician of the year for his compassionate and cutting edge care of IC patients. Patients from around the world and the USA fly to North Carolina to work with him. If you are not responding to treatment, getting worse rather than better then please consider getting a second opinion from a doctor with more expertise and skill. Remember, local urologists and/or gynecologists may never have seen a case like yours but, with no doubt, national doctors have. You are an anatomical mystery to be solved. Dare to be bold and seek the care of IC experts. There are several doctors around the country of national repute. You can find the list on our website!
🙁 Elmiron Eye Disease & FDA Poor Response
Yet more studies in 2019 found that Elmiron is strongly associated with retinal disease and, most importantly, that the FDA has yet to take action on our formal petition requesting that a new label warning be created requesting patients to have annual eye examinations. Our eye health is at stake. Newly diagnosed patients should be educated and informed about the potential risk of this medication. A change in labeling, as well as marketing materials, should be required. Stay informed on this issue at our new website – https://www.pentosaneyedisease.org
🙂 Mysteries of Hunner’s Lesions Revealed
One of the great mysteries of IC is how and why Hunner’s lesions develop. New research was released last Spring that found that many of these patients have previously been diagnosed with mononucleosis, aka the Epstein Barr virus. This could explain why lesions have been so resistant to treatment but, more importantly, can open up new treatment options. Take note, as well, of the new studies showing that hyberbaric oxygen therapy has also been found to be helpful in the treatment of lesions. If you struggle with lesions, have they been treated correctly? If not, it’s time to ask! Untreated lesions are the most common cause of severe pain in the IC patient community. Learn more!
🙁 Dementia Risk With Some IC medications
New research demonstrating that many of the anticholinergic medications often prescribed to IC patients, including antidepressants (Elavil, etc.) and bladder antispasmodics (Ditropan, Detrol) have again been linked to cognitive decline and dementia. Yet another quite larger study from the United Kingdom demonstrated that patients over the age of 50 who took medication daily for 3 years had a significant increase in the risk of cognitive decline. If a doctor suggests any of these medications, please ask for other, safer forms… especially if you are over the age of 50. There are effective medications that don’t care the same risk, such as Myrbetriq® for bladder spasms. We are long past the days when every patient is prescribed Elmiron and Elavil. With subtyping, patients are finding more effective treatments for their unique case of pelvic pain
🙂 OTC Supplement Options Expand
With Elmiron now implicated in eye damage and Elavil/Ditropan now linked to cognitive decline, many patients are turning to a more holistic approach. Several new OTC supplements produced by a new company, Natural Approach Nutrition, were introduced in 2019 bringing more methods of action, higher quality and pricing. You have options in 2020 that might be worth exploring if you are uncomfortable taking traditional medications.
- PEAORA™ – For patients who have been denied pain care and/or forced off of their medication, we were delighted to see new research from Italy which showed that the OTC supplement palmitoylethanolamide (PEA) and reserveratrol significantly reduced pain in patients with interstitial cystitis. A similar formula, PEAORA POLY 500™, is now available in the USA.
- BLADDER REST™ – Created as an alternative to Cystoprotek, Bladder Rest contains more of the key essential ingredients for $8 less per month.
- BLADDER BUILDER™ – The most comprehensive formula on the market for bladder health, Bladder Builder looks beyond the traditional ingredients (chondroitin, quercetin, etc.) to include collagen for the bladder wall, probiotics for the gut and PEA for pain relief.
🙁 Have you been floxed?
Almost every IC patient has been prescribed antibiotics for IC “flares” despite the fact that there was no sign of infection. Now we have learned that two of the most common antibiotics used, Cipro & Levaquin, have so many severe and/or life threatening side effects that the risk far outweighs the benefits in most cases. If you have taken or are taking Cipro for routine infections or to prevent infections, please ask your doctor for a safer, less risky medication. The FDA no longer recommends their use for simple bladder infections and we ARE are seeing IC patients struggling with tendon ruptures, peripheral neuropathies, CNS damage and even aortic aneurysm due to their overuse. Learn more here!
🙂 We are stronger together! Live support groups thrive!
The amazing support patients are providing to each other in support groups throughout the world and, especially, during our live international streamed support group meetings. Some have been viewed by more than 1000 patients! We will be doing many more live streamed support group meetings and events in 2020 with even more free giveaways! Look for new videos too!
🙁 CDC Admits Opioid Guidelines Have Harmed Many Chronic Pain Patients
The Center for Disease Control admitted CDC Guidelines for Opioid use have been misapplied and harmed many chronic pain patients, as well as IC patients.
- The guidelines have been applied to patients for whom it was never intended. The original intent of the guideline was for patients 18 and older in a primary care setting.
- The dosage recommendations in the guideline have been misapplied and resulted in rigid limits or suddenly cutting off opioid prescriptions.
- The guideline was only to apply for when physicians were first starting to prescribe opioids and was NOT meant to tell physicians to discontinue the use of opioids already prescribed at higher doses.
- The guideline does NOT advocate for abruptly tapering or discontinuing opioids already prescribed, because doing so can have severe negative effects on patients.
Yet, despite their statement, IC patients are still being forced off medications that, in many cases, have given them the ability to function and work. Thankfully, there is growing pressure to not only revise but perhaps even remove the guidelines that have unfairly blamed the chronic pain patient community for opioid misuse rather than the illegal distribution of medications from China. Learn more!