I figured it would stop like the doctor said. So I figured in another six months I would be totally bald so I stopped taking the pill. Seeing that I wasn't getting enough relief for the interstitial cystitis! That's my story, take it for what it is worth Dee from Chicago. I have been taking Elmiron for 2 years and it has helped.
I rarely have any pain and no side effects. It took 1 month to start working and I cannot even explain the difference in life. The medication is expensive even with insurance but worth it. I have only been on this drug for 3 months so I don't feel I am able to give it a fair report considering my doctor said I will have to be on it for at least a year and it would take months to actually start working effectively. The only concern I have is that my hair is falling out by the handfuls and I really have been blessed have beautiful hair It is a very expensive drug and the IVI treatments are expensive also I do not foresee me being able to continue either if we go to some sort of Universal or national healthcare system The government isn't going to pay for this!
I have had IC for over 20 years and was only diagnosed 6 months ago as my pain and hospital visits were increasing. I have had 1 round of instillations and then elmiron twice a day. It started working after 5 months.
I could only hold cc now I can hold cc. The first few months I had frequent headaches, mood swings, painful periods and body rashes which subsided. I have had minimal hair loss. But have noted some dizziness after my second pill of the day, and I cannot take any other medications as my system is so weak I faint. They told me the that the 2 were supposed to be taken together to work. My hair started to fall out by the handfulls.
Then for someone who normally smelt clean all of the time, I had a horrible body odor. I finally, after several months, could not take the side effects any longer. I had to stop the Elmiron. It took, at least, 6 mons for my hair to stop falling out. I have been taking Elmiron for 3 months now. For the first 2 months I was not able to detect any "obvious" changes in my flare frequency or pain level. Now upon the 3rd month I have noticed some significant changes.
When I experience a flare now the pain is less severe, before I could not even walk, now I am still able to function without taking as many pain meds as I did before. As far as side effects go I did experience mild stomach upset in the beginning.
No hair loss, no headaches, etc. I had read in an article that Elmiron should be given at least 1 year to see if there is some sort of benefit, though packaging states 8 weeks. I think when reading message boards you tend to hear more from people who are not responding to medications rather than those of us who are.
If any of these side-effects is persistent or gets worse over time, you should see a doctor. More serious side-effects that warrant immediately contacting your doctor include:. Allergic reactions to Elmiron are rare but can be serious. The symptoms of an allergic reaction include:.
If you experience any of these symptoms, contact your doctor immediately. The rash, itching, and swelling are particularly a cause for concern if they appear in the throat, tongue, and face. Elmiron has been linked to eye damage , particularly to the retinas. Ophthalmologists at Kaiser Permanente in California did a study on patients who had taken Elmiron over the course of fifteen years.
That study found that in about a quarter of patients who have taken large amounts of Elmiron had experienced damage to their retinas. Often, this damage was mistaken for pattern dystrophy or the age-related macular degeneration rather than maculopathy caused by Elmiron toxicity. The author of the study, Dr. This is to catch eye damage early so that further damage can be prevented by stopping taking Elmiron. Maculopathy is a disease that affects the macula, which is a spot on the retina that sees vision the keenest.
Researchers found that Elmiron toxicity could cause a unique pigmentary maculopathy in patients who took Elmiron for long periods of time.
Because of its uniqueness, this form of maculopathy is often mistaken for a different type of eye condition, such as macular degeneration, especially since many patients who take Elmiron for interstitial cystitis are older.
The primary symptoms of Elmiron-related pigmentary maculopathy are blurred vision, dark adaptation taking longer periods of time, and metamorphopsia, which is vision distortion that causes those suffering from it to see straight lines in a grid as wavy or even blank. Ophthalmologists have found that subtle changes in the pigmentation of the macula had occurred and that abnormalities appeared on tests.
The changes in pigmentation that occur in the macula are spots of hyperpigmentation, or spots that appear darker than the surrounding area.
These spots were also accompanied by spots of light yellow or orange. Despite the evidence linking Elmiron to eye damage, the FDA has not issued a recall of the drug. Nor has the FDA issued a warning to alert patients of the risks of taking Elmiron long-term. Elmiron is still the only drug available to treat interstitial cystitis.
This means that patients could be taking the drug for years without realizing the damage it could do to their eyes. It also means that doctors could continue prescribing the drug without knowing and then mistake the symptoms for another eye condition like macular degeneration. The lawsuit is on behalf of several patients who have taken Elmiron for extended periods of time to treat interstitial cystitis and have experienced vision loss and retinal damage as a result.
If you or a loved one has taken Elmiron for long periods of time to treat interstitial cystitis, or Painful Bladder Syndrome, and has experienced eye damage and vision loss because of it, you may have a case against the company that produced the drug. Despite the known links between long-term use of Elmiron and damage to the macula in the eye, which includes vision loss, the drug continues to be manufactured and sold.
The FDA has not issued a recall or even a warning. Sign up for newsletter. Patients are urged to continue therapy for at least six months before discontinuing treatment. Pain subsides first, but a decrease in urinary frequency may take six to nine months. It may also be necessary to use other medicines, such as low-dose tricyclic antidepressants , antihistamines, etc. The side effects of Elmiron include minor gastrointestinal disturbances. Some patients have also experienced hair loss that is reversible upon discontinuing the drug.
Drug information provided by: IBM Micromedex. Pentosan polysulfate sodium is used to relieve the symptoms eg, pain, discomfort of interstitial cystitis inflammation of the bladder. In deciding to use a medicine, the risks of taking the medicine must be weighed against the good it will do. This is a decision you and your doctor will make. For this medicine, the following should be considered:.
Tell your doctor if you have ever had any unusual or allergic reaction to this medicine or any other medicines. Also tell your health care professional if you have any other types of allergies, such as to foods, dyes, preservatives, or animals. For non-prescription products, read the label or package ingredients carefully.
Appropriate studies have not been performed on the relationship of age to the effects of pentosan polysulfate sodium in children younger than 16 years of age. Safety and efficacy have not been established.
Appropriate studies have not been performed on the relationship of age to the effects of pentosan polysulfate sodium in the geriatric population. There are no adequate studies in women for determining infant risk when using this medication during breastfeeding. Weigh the potential benefits against the potential risks before taking this medication while breastfeeding.
Although certain medicines should not be used together at all, in other cases two different medicines may be used together even if an interaction might occur. In these cases, your doctor may want to change the dose, or other precautions may be necessary. When you are taking this medicine, it is especially important that your healthcare professional know if you are taking any of the medicines listed below.
The following interactions have been selected on the basis of their potential significance and are not necessarily all-inclusive. Using this medicine with any of the following medicines is usually not recommended, but may be required in some cases.
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