Interstitial Cystitis - I would like to connect with others

Posted by 8dzaweek @8dzaweek, Mar 22, 2016

I.ve been told that Interstitial Cystitis is an autoimmune disease. Are there any discussion groups on this very painful condition??

Interested in more discussions like this? Go to the Kidney & Bladder group.

@becsbuddy

@thejae1 Here is some information on Elmiron. Taking new medications is always unnerving, but remember the companies are required to list all side effects even if they only happened once in a million. I tried to get the link, but got this whole page instead.

Elmiron
Generic name: pentosan polysulfate sodium (PEN toe san POL ee SUL fate SOE dee um)
Brand name: Elmiron

Medically reviewed by Drugs.com on Oct 20, 2020. Written by Cerner Multum.

Uses
Warnings
Dosage
What to avoid
Side effects
Interactions
What is Elmiron?
Elmiron is used to treat bladder pain and discomfort caused by cystitis (bladder inflammation or irritation).

Elmiron is for use in adults and children at least 16 years old.

Elmiron may also be used for purposes not listed in this medication guide.

Warnings
Taking Elmiron can make it easier for you to bleed. Call your doctor at once if you have any unusual bleeding (nosebleed, blood in your urine or stools, rectal bleeding, coughing up blood, bleeding gums).

Before taking this medicine
You should not use Elmiron if you are allergic to it.

Tell your doctor if you have ever had:

a bleeding or blood clotting disorder;
eye problems (especially a problem with your retina) in you or a family member;
an aneurysm or stroke;
a stomach ulcer, intestinal polyps or diverticulitis; or
liver disease.
Tell your doctor if you are pregnant or breastfeeding.

How should I take Elmiron?
Follow all directions on your prescription label and read all medication guides or instruction sheets. Use the medicine exactly as directed.

Take Elmiron with a full glass of water. Take on an empty stomach, at least 1 hour before or 2 hours after a meal.

Swallow the delayed-release capsule whole and do not crush, chew, break, or open it.

Your doctor will need to check your progress every 3 months to help determine how long to treat you with Elmiron. You may also need blood tests and vision examinations to check for certain side effects.

If you need surgery, tell your surgeon you currently use this medicine. You may need to stop for a short time.

Store at room temperature away from moisture and heat.

Detailed Elmiron dosage information
What happens if I miss a dose?
Take the medicine as soon as you can, but skip the missed dose if it is almost time for your next dose. Do not take two doses at one time.

What happens if I overdose?
Seek emergency medical attention or call the Poison Help line at 1-800-222-1222.

What should I avoid while taking Elmiron?
Ask a doctor or pharmacist before using any medicine that contains aspirin, ibuprofen, or similar ingredients. This includes medicine for pain, fever, swelling, or cold/flu symptoms.

Elmiron side effects
Get emergency medical help if you have signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

Call your doctor at once if you have:

nosebleeds, bleeding gums;
blood in your urine or stools;
rectal bleeding;
coughing up blood;
a light-headed feeling, like you might pass out; or
vision problems (blurred vision, trouble reading, trouble seeing in low light).
Common side effects may include:

bruising, blood in your stools;
hair loss;
nausea, diarrhea, upset stomach;
headache;
swelling, weight gain;
dizziness;
rash; or
abnormal liver function tests.
This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Elmiron side effects (more detail)
What other drugs will affect Elmiron?
Tell your doctor about all your other medicines, especially:

a blood thinner–warfarin, Coumadin, Jantoven;
medication used to prevent blood clots–apixaban, heparin, rivaroxaban, Eliquis, Xarelto, and others; or
NSAIDs (nonsteroidal anti-inflammatory drugs)–aspirin, ibuprofen (Advil, Motrin), naproxen (Aleve), celecoxib, diclofenac, indomethacin, meloxicam, and others.
This list is not complete. Other drugs may affect Elmiron, including prescription and over-the-counter medicines, vitamins, and herbal products. Not all possible drug interactions are listed here.thejae1

Elmiron
Generic name: pentosan polysulfate sodium (PEN toe san POL ee SUL fate SOE dee um)
Brand name: Elmiron

Medically reviewed by Drugs.com on Oct 20, 2020. Written by Cerner Multum.

Uses
Warnings
Dosage
What to avoid
Side effects
Interactions
What is Elmiron?
Elmiron is used to treat bladder pain and discomfort caused by cystitis (bladder inflammation or irritation).

Elmiron is for use in adults and children at least 16 years old.

Elmiron may also be used for purposes not listed in this medication guide.

Warnings
Taking Elmiron can make it easier for you to bleed. Call your doctor at once if you have any unusual bleeding (nosebleed, blood in your urine or stools, rectal bleeding, coughing up blood, bleeding gums).

Before taking this medicine
You should not use Elmiron if you are allergic to it.

Tell your doctor if you have ever had:

a bleeding or blood clotting disorder;
eye problems (especially a problem with your retina) in you or a family member;
an aneurysm or stroke;
a stomach ulcer, intestinal polyps or diverticulitis; or
liver disease.
Tell your doctor if you are pregnant or breastfeeding.

How should I take Elmiron?
Follow all directions on your prescription label and read all medication guides or instruction sheets. Use the medicine exactly as directed.

Take Elmiron with a full glass of water. Take on an empty stomach, at least 1 hour before or 2 hours after a meal.

Swallow the delayed-release capsule whole and do not crush, chew, break, or open it.

Your doctor will need to check your progress every 3 months to help determine how long to treat you with Elmiron. You may also need blood tests and vision examinations to check for certain side effects.

If you need surgery, tell your surgeon you currently use this medicine. You may need to stop for a short time.

Store at room temperature away from moisture and heat.

Detailed Elmiron dosage information
What happens if I miss a dose?
Take the medicine as soon as you can, but skip the missed dose if it is almost time for your next dose. Do not take two doses at one time.

What happens if I overdose?
Seek emergency medical attention or call the Poison Help line at 1-800-222-1222.

What should I avoid while taking Elmiron?
Ask a doctor or pharmacist before using any medicine that contains aspirin, ibuprofen, or similar ingredients. This includes medicine for pain, fever, swelling, or cold/flu symptoms.

Elmiron side effects
Get emergency medical help if you have signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

Call your doctor at once if you have:

nosebleeds, bleeding gums;
blood in your urine or stools;
rectal bleeding;
coughing up blood;
a light-headed feeling, like you might pass out; or
vision problems (blurred vision, trouble reading, trouble seeing in low light).
Common side effects may include:

bruising, blood in your stools;
hair loss;
nausea, diarrhea, upset stomach;
headache;
swelling, weight gain;
dizziness;
rash; or
abnormal liver function tests.
This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Elmiron side effects (more detail)
What other drugs will affect Elmiron?
Tell your doctor about all your other medicines, especially:

a blood thinner–warfarin, Coumadin, Jantoven;
medication used to prevent blood clots–apixaban, heparin, rivaroxaban, Eliquis, Xarelto, and others; or
NSAIDs (nonsteroidal anti-inflammatory drugs)–aspirin, ibuprofen (Advil, Motrin), naproxen (Aleve), celecoxib, diclofenac, indomethacin, meloxicam, and others.
This list is not complete. Other drugs may affect Elmiron, including prescription and over-the-counter medicines, vitamins, and herbal products. Not all possible drug interactions are listed here.

What about Elmiron makes you leary?

Jump to this post

Thanks. The Dr did mention some of these. I doubt if I could stick with it. I may look into the natural supplements. The side effects may be worse than the actual problems I have. 🤔

REPLY

I think the jury is still out on whether IC is an auto-immune disease. It sure acts like it though. It certainly causes inflammation. My symptoms are best controlled through diet. I would argue that coffee and tea may be the most likely culprits in my diet. It often is accompanied by other typically "women's diseases" like IBS, migraines, and fibromyalgia, perhaps pointing to a hormonal component, although again, still not proven. There are a few help groups on line, on Facebook, and a website called IC Help, I believe.

REPLY
@bobsgift

I deal with the curse. My urologist said it's due to my transplanted kidney migrating too close to my bladder which causes the inside walls of the bladder to touch causing the irritation. Before I was diagnosed several years ago I assumed I was suffering from chronic UTIs and took a regular prophylactic low dose anti biotic. I get much better results following the IC diet and taking D- mannose. I've not taken anything for pain in the past. I usually just cancel my day and stay home but not everyone can do that. As an interesting side note…the same foods that exacerbate IC symptoms flare up my rosecea!!

Jump to this post

What brand and how much of the D-Mannose do you take? Thank you.

REPLY
@csage1010

I think the jury is still out on whether IC is an auto-immune disease. It sure acts like it though. It certainly causes inflammation. My symptoms are best controlled through diet. I would argue that coffee and tea may be the most likely culprits in my diet. It often is accompanied by other typically "women's diseases" like IBS, migraines, and fibromyalgia, perhaps pointing to a hormonal component, although again, still not proven. There are a few help groups on line, on Facebook, and a website called IC Help, I believe.

Jump to this post

@csage1010 You are so right! There is definitely research being done that shows that autoimmune diseases are a woman’s disease. Here is a link to good articles:
https://www.hopkinsmedicine.org/health/wellness-and-prevention/autoimmune-disease-why-is-my-immune-system-attacking-itself
https://www.scientificamerican.com/article/the-terrible-toll-of-76-autoimmune-diseases/
Have you any more found more articles like this?

REPLY

I was diagnosed with IC several years ago. I had 16 bladder installations, botox, hyper distended bladder (stretching), acupuncture, bio feedback with a pain psychologist, 16 weeks of mindfulness classes, neurostimulator belts, and a pain pump which worked at first until I built up a tolerance to the medication, over active bladder meds which help with urgency and frequency but don't really address the pain.

I use very little artificial sweetener and I quit drinking anything with caffeine. I also quit eating any fruit with citric acid.

I'm totally lost!!! Any ideas??

REPLY
@douglsrson

I was diagnosed with IC several years ago. I had 16 bladder installations, botox, hyper distended bladder (stretching), acupuncture, bio feedback with a pain psychologist, 16 weeks of mindfulness classes, neurostimulator belts, and a pain pump which worked at first until I built up a tolerance to the medication, over active bladder meds which help with urgency and frequency but don't really address the pain.

I use very little artificial sweetener and I quit drinking anything with caffeine. I also quit eating any fruit with citric acid.

I'm totally lost!!! Any ideas??

Jump to this post

Hi douglsrson, welcome. You'll notice that I moved your post to this discussion about Interstitial Cystitis in the Kidney & Bladder group (https://connect.mayoclinic.org/group/kidney-conditions/). I did this so you can connect with fellow members like @thejae1 @csage1010 @bustrbrwn22 @joybringer1 @daphne47 and others.

You might also be interested in this discussion:
– Interstitial Cystitis: Anyone have symptom relief tips?: https://connect.mayoclinic.org/discussion/interstitial-cystitis-1/

REPLY
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