ELMIRON Reviews (PENTOSAN POLYSULFATE SODIUM)Average Rating: 3.3 (238 Ratings)Filter ResultsCompare ELMIRON with similar:
Type: Rx Drug
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Results are sorted by Date added. Key to Ratings: 1=LOW (I would not recommend taking this medicine.) |
More on ELMIRON: Reviews Summary | Drug Safety Information
| RATING | REASON | SIDE EFFECTS FOR ELMIRON | COMMENTS | SEX | AGE | DURATION/ DOSAGE | DATE ADDED |
| 2 | IC | I'm not sure about this stuff - my doctor says it takes more than 6 months (not weeks) to actually see any effects. I've been on it only a month and already have blurred vision, lots of gas, and I feel like I'm retaining water (swolen ankles, abdomen, face). And the scariest part was when my doctor said "they" don't really know how Elmiron works! And we're trusting this stuff because...??? So far, there has been no relief from the IC symptoms, and on this med, I actually feel worse than I did before. The jury is still out for me, but I am beginning to doubt I'll make it to the 6 month mark. | F | 44 | 40 days | 6/10/2008 | 5 | IC | None | My IC began shortly after menopause. I searched for 5 years for a solution visiting several urologists who would diagnose it as bacterial cysistis. As soon as I would stop taking the antibiotic, the symptons would return. My mother had experienced the same problems during her lifetime and passed away before Elmiron was developed. My symptons were pressure, frequent urination and terrible burning as if my bladder was on fire, extreme fatigue and vertigo which prevented me from driving at times. It was very dibilitating. I finally found a doctor who diagnosed the problem, but this was before Elmiron. The treatment was to have my bladder stretched to break up all the built-up scar tissue in the bladder lining caused by IC (under anethesia). The bladder would bleed and that is how the conditon was positively identified. I would get relief for about five years before I would have the procedure again. THEN WHEN ELMIRON WAS PUT ON THE MARKET AND I BEGAN TAKING IT. MY SYMPTOMS DISAPPEA | F | 70 | 9 years | 6/7/2008 | 5 | Interstitial Cystitis | Only difficulty was taking as described .....needed to take with food. I wish it worked faster the wait is hard and I do think symptoms should be treated during the waiting time at least somewhat!!! | It may only help 25% of patients but if your lucky enough to be in that 25% the amount of help is so huge that since we are all individuals with every single treatment that we need to give it a try. It may not be for you but this is a struggle where we need to do a lost of testing of our options! | F | 31 | 7 years | 6/5/2008 | 2 | Interstitial Cystitis | My gums would bleed with teeth brushing. Bruised more easily than normal. I didn't notice any help at all with the IC. It was like I was not taking anything. | I took 100 mg 3x's a day for about a yr., then went down to two times a day the second yr., then one for a few months....then came off all together. I am concerned about long term side effects down the road. They have no clue 'how' Elmiron works. Scary! | F | 36 | 2 years | 5/21/2008 | 5 | Every now in then dizzy spells in the morning | Elmiron gave me my life back I will put up with being dizzy every now in then.The only thing that I was living for was my cild now I can live for myself again and enjoy life thank the lord for elmiron.If elmiron shortens my life I will take qualty over quanity any day! | M | 41 | 4 days | 5/9/2008 | 5 | IC | Some hair loss just on back. Elevated liver enzymes. | This medication is a Godsend. I have no more pain, frequency or urgency. I can now go up to six hours without urinating. | F | 70 | 10 years | 5/8/2008 | 2 | IC; frequent urination; severe pain | Hair loss and nausea, but mostly BRUISING!! I bruise incredibly easily; I noticed the increase in number of bruises a couple weeks after taking Elmiron, but after awhile the number diminished, yet the necessity to be extra-careful remained. Recently, I stopped taking Elmiron for a short time and resumed...and so did the bruising. For example, the bruise of the week is 5x7 in. (dark and solid) on my thigh. | I had been getting DMSO installations about every other week for two years before starting Elmiron | F | 20 | 3 years | 5/1/2008 | 5 | Interstitial Cystitis | Very frequent urination and terrible pain. | This medication has been a Godsend. I would not want to live without it. I probably have some side effects but they will just have to be tolerated. I took it for at least 9 months with no results whatsoever and most would have given up. However, I am a very stubborn woman and was in much pain. Prior to Elmiron, it was difficult to travel anywhere without stopping every few miles. I always spotted the restroom when I entered any building and made a note of the ones located at the front door for future reference. Now I am completely pain free and can go up to 6 hours without urinating. Can you believe this? My urologist says he has over 200 IC patients and only about 10 are on Elmiron because of the waiting period for results. This is a real shame. I recommend you wait at least a year before giving up. It is definitely worth it. I have lost hair but just in one place in the very back. My liver enzymes are elevated from time to time but I take other medications that can cause | F | 70 | 10 years | 4/13/2008 | 4 | IC | None for the first 2-3 months, then started having painful gas every morning and cannot sleep through the night. No hair loss, no blurred vision, no headaches. | The lack of sleep could be related to fibromyalgia, but it is listed as a possible side effect for Elmiron and I'm not chancing going off it to see. The drug alone has really helped the pain and urgency/frequency; I haven't changed anything about my diet for IC. I am supposed to only be on it for 6 months, so we'll see what happens after that. I am worried about the lack of testing that has been done on this drug -- I am also on birth control and synthetic thyroid medicine, but since no drug-drug interaction tests have been done, I don't know how well each drug is actually working, which is very discomforting. | F | 23 | 4 months | 4/6/2008 | 4 | IC | I have had minimal side effects. Had constant constipation prior to starting Elmiron so maybe it has helped that as well. I am noticing an increase in vaginal discharge, clear and mostly odorless, not sure if it is a side effect | I did not have pain with my IC, just frequency. Elmiron has helped while Detrol & Vesicare did not. | F | 48 | 4 months | 3/28/2008 | 3 | I C | Dry eyes, seeing spots. bloody nose. headaches really bad | I have suffered from IC for my whole life and only a few months ago did I find a doc who found out what it was and treated me. It has really helped so far. I notice a 75% change I would say. I am going to try and stick it out a little longer. Im so worried about the Hair loss side effect and long term use. I find not drinking soda and coffee really helps alot. | F | 27 | 40 days | 3/24/2008 | 3 | IC | Initially, diarrhea, nose bleeds, dizziness. The diarrhea and nose bleeds have stopped for the most part, but I still get dizzy easily. I am tired ALL the time and have started seeing spots all the time and have started having a headache pretty much all the time. | I have been on Ditropan for about 12 years and it has always kept my IC under control. It is a life saver. I had a bad flare up a few months ago and my doctor put me on Elmiron. It has helped some but I can't wait to stop taking it because of the side effects. I am still taking Ditropan and will continue that. My doctor wants me to stay on Elmiron for at least 6 months. I will try, but not for longer than that. I have been on it for 3. | F | 44 | 3 months | 3/9/2008 | 4 | IC | Diarrhea, ringing in the ear | I believe this drug has helped in combination with a low dose of Elavil. The side effects are tolerable. The only flare ups I've had just invlove a little more frequency. Otherwise, it's been great. I try to stick to a low acid diet but I do still drink a little coffee in the morning. Tried Pre Relief. Not sure if it works. Pretty happy with the Elmiron so far!!!! | F | 47 | 6 months | 1/17/2008 | 2 | IC | Blurred vision and headaches like I have never experienced before. They make me feel helpless and incapacitated for the duration of the day. I don't want to eat anything, which with the dosing it isn't like that is possible anyway! I am happy for those whom this works for. However, I wish doctors would realize that for some of us this "solution" is worse that the problem. | Have had IC for several years and have felt horrible. It took a long time to find a doctor who would even listen to how I felt or test for IC. I thought ELMIRON would help, but I don't think I can continue chasing a four year old around with a headache or nausea like this. | F | 29 | 3 weeks | 1/12/2008 | 3 | IC | None so far. I will gladly go bald and have a headache if this drug works!! LOL | I have been able to get the pain under control with low acid diet. Only need pain meds at night and tylenol in the day. YEAH! Still have to urinate every 1-2 hours though. I have faith elmiron will help. | F | 47 | 10 days | 12/6/2007 | 5 | Interstitial Cystitis | Mild diarrohea. Lots of wind - could send a sailing ship across the sea. | Previous years - to toilet 20 times a day; stuck at home; constant pain; worst never could sleep for more than an hour so VERY sleep deprived led to deep depression Now - last night I slept for more than 4 hours, Pain is now manageable because there is less of it. I'm going to a party at the week-end. My life is back Hurray. Thank you Elmiron. Only problem is high cost here in Australia $174 a month. | F | 62 | | 11/28/2007 | 5 | IC | Very few side effects. What I did experience went away after several months of taking it. It worked very well for me. | Though I have taken Elmiron for seven years, I will have to stop next month. My new insurance company doesn't cover it and since I am a teacher, I can't afford $364 for a month's supply. I am hoping Prelief and watching my diet will keep me away from the continuous pain I had before I began taking Elmiron. Please email me if you have suggestions. | F | 22 | 7 years | 11/21/2007 | 1 | IC | Hair loss, blurred vision | I would like to know if others have been prescribed this drug for urgency alone. I have no pain and am terrified of the side effects. My doctor won't come out and say if I even have IC. | F | 58 | 3 weeks | 11/18/2007 | 4 | IC | NONE | So far I have only slight irritated bladder symtoms keeping my fingers crossed. | F | 52 | 1 months | 11/1/2007 | 3 | interstitial cystitis | headache, diarreah, dry mouth | I have been taking elmiron for 5 months. I am also taking detrol LA, and some of these side effects may be attributed to the detrol, but I started detrol one month earlier and didn't notice many of these symptoms. I have dry mouth, but that is a side effect of detrol as well. The two major symptoms are diarreah and headaches. The headaches are AWFUL and happen almost daily, enough that I am going to discontinue my medication. I have diarreah about three times every day and it's gotten normal for me, but now that I think about it, it's pretty annoying. I think I am done with elmiron. The negative effects seem to outweigh any noticeable benefit | F | 20 | 5 months | 10/16/2007 |