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Interstitial Cystitis - I would like to connect with others
I.ve been told that Interstitial Cystitis is an autoimmune disease. Are there any discussion groups on this very painful condition??
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HugInterested in more discussions like this? Go to the Bladder Conditions Support Group.
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I'm 59 and was diagnosed with it in my early 20s. Back then, treatment options were very limited. Today, you can find lots of resources on the Interstitial Cystitis Association website https://www.ichelp.org/
There are also many Facebook groups for people with the disease.
If a doctor offers you the medication Elmiron, DON'T TAKE IT! It has been linked to many cases of retinal damage & there are ongoing lawsuits. It may also be linked to polyps in the bowels, studies are still pending.
@8dzaweek you're aware that Elmiron causes damage to your eyes, specifically your retinas?
https://www.drugwatch.com/elmiron/
Hello @dreamspinner3,
As you mentioned, there are risks with taking Elmiron that does include potential vision issues for a small percentage of those who take it. Unfortunately, Elmiron is the only FDA-approved medication for interstitial cystitis, https://www.drugs.com/mtm/elmiron.html, https://www.accessdata.fda.gov/drugsatfda_docs/label/2021/020193s015lbl.pdf. As mentioned on the https://www.ichelp.org/understanding-ic/medications/pentosan-polysulfate-sodium/ website, Elmiron has shown some improvement for patients.
Each person experiences a medication differently and it is important to document any potential side-effects as you experience them and to inform your provider who prescribed the medication.
I was given Elmiron, was aware of possible side effects, but kept my eyes checked and never had a problem. It helped me tremendously! The pain stopped and I was pleased with it! My primary physician did ask me to try using Cystex, a supplement for the bladder, from Amazon. I finished the Elmiron, started the Cystex, (expecting the pain to start again) but, no pain. I took two bottles, I believe, then stopped it after that. Amazingly, I've never had pain like that again. I know my condition isn't as severe as some but, it doesn't explain why my pain stopped. I still have the spasms and losing control but, I'm ok with that. There are risks of side effects with any medication but, that doesn't mean it will affect everyone who takes it. I hope you get the help you need with your pain!