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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 Kidney & Bladder Support Group.
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I have just been diagnosed with Interstitial cystitis and would like to communicate with others who have this bladder disease.
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1 ReactionI just had a cystoscope with distention. I have had negative bladder infection results from my urologists. I changed to a urogyn and she diagnosed the problem on the first visit. I take hydroxyyzine at bedtime and AZO during flare ups. Ihave tried other meds but they are either too expensive or didn’t help
Where can I find the IC diet?
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1 ReactionI just started taking hydroxyzine. Will let you know if it helps.
The hardest thing for me to give up has been coffee. And I work for Starbuck's!
Do you find the Prelief effective?
Yes, it works better than other things I have tried.
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1 ReactionThejae, I found this resource about interstitial cystitis and diet
https://www.ichelp.org/living-with-ic/interstitial-cystitis-and-diet/
What is your biggest challenge with this new diagnosis?
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2 ReactionsI do not have pain with IC. I just had a cystoscope with dissention and was diagnosed with IC. The Dr wants me to try Elmiron for a couple months but I am leary. I also take hydroxyzine for the IC. It helps calm me. The Prelief helps. The biggest challenge is changing my diet. 😣
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1 Reaction@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?