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 |
| 5 | IC | Constant burning, extreme bladder pain. | After spending over a year trying to determine what the problem was- waiting 6 months or more for Elmiron to work was hard. Now, seven years later, I live a normal life- despite the IC. Initially, I had problems with diarrhea. That eventually went away as I learned how to take the drug. Now, two capsules in the morning and I am fine. The only side effect I have noted is when taking Elmiron and aspirin at the same time I have ringing in the ears. I have learned not to take aspirin within four hours of taking elmiron. | M | 45 | 7 years | 4/13/2009 | 3 | Interstitial Cystitis | Nausea, stomach pain, loss of appetite, weight loss | My doctor took me off the Elmiron because the side effects were too severe for me to handle and they persisted the entire time I was on the medication. A real shame, as this is currently the only oral medication we have. | F | 59 | 8 months | 4/13/2009 | 3 | IC | I was very nervous about starting Elmiron because my doctor didn't seem to know much about it, and everyone keeps telling me that it has horrible side effects. I have felt like I'm starting to loose hair but that could just be all in my head. I have for sure almost everyday felt very sick to my stomach since I've started Elmiron, and today I've had horrible diareah. It's been dreadful and from what I've read others have had this annoying side effect. My head hurts just about every morning and a couple of times its been unbarrable. | Elmiron has seemed to have helped my blatter a noticable amount. I don't bleed from my blatter everyday like I use too, but it hasn't completly gone away either. The burning has been completly gone but it does still feel sore quit offten. The side effects may be too much for me to be able to stay on it much longer, but i'm trying to deal with it since this seems to be the only option for IC | F | 17 | 4 weeks | 3/29/2009 | 5 | IC | None so far | Elmiron has changed my life -- I've been taking it for almost 10 years now and although I originally took 4 100 MG capsules per day, I've been able to reduce that to 2 100 MG every morning about an hour before eating. It takes at least six months to begin working. If you stop taking it, it takes about 6-10 days before you notice, but trust me, you WILL notice, as within 6-10 days of stopping, the burning, frequency and pain will return. I faithfully renew my prescription and get seen yearly by my IC specialist. As long as there are no long-term side effects, I plan to take this the rest of my life. | F | 50 | 9.5 years | 3/3/2009 | 5 | ICS | I have taken it for 5 years. In December my blood pressure started climbing (always had very low blood pressure), I began having terrible headaches, dry eyes, cataracts, dry skin. An MRI of brain showed some unusual changes from dryness. We are presently investigating this. This medication cured a lifelong problem I have had BUT now I am in real trouble. Will post any information that I obtain. | For years I was treated for bladder infections. Frequent urination was my daily routine. Elmiron stopped this within weeks. I have not had another one until December when all the other health problems surfaced. I think it works but it may be drying out other vital areas. | F | 61 | 5 days | 2/26/2009 | 3 | IC | headaches early on, gas and stomach cramping, disturbed sleep, then after a couple of months moodiness | Initially I loved the relief I got from this drug, despite the headache that comes after first taking it (more water does help) but the gut issues seem to be getting worse and as embarrassing as blatter problems were. I appreciate all the input on this page, will try eliminating the capsules. | F | 42 | 3 months | 2/1/2009 | 4 | Interstitial Cystitis | Hair loss/thinning, bloating, skin issues. | I've taken Elmiron for about 4-1/2 years. I was just given the green light by my gynecologist to stop taking it due to hair loss. She said that I've taken it long enough where my bladder lining should be built up enough. I'm nervous about stopping it for fear of going back to the way I was feeling, but I'm anxious for my hair to grow back. Time will tell! | F | 36 | 4.5 years | 1/27/2009 | 1 | IC | severe headache, nosebleed, red blotch on cheek, tiredness severe, nauseau, mental mood change | M | 64 | 14 days | 1/24/2009 | 4 | IC | This medicine has been VERY hard on my stomach. I'm currently taking 100mg three times a day. My Dr. is now recommending I try 2 pills at night to see if I can tolerate it but I'm in so much pain that I think I'm going to go off of it completely and then slowly start taking a smaller dose if/when I need to. | I was VERY hesitant to take Elimron, as none of my Dr.'s were very big fans of it, and use it almost as a last resort. My bladder has been excellent since starting it, although I started taking it the day after I had a hydrodestension so its hard to say if its the medicine or the procedure that have had such a positive influence on my bladder. I guess I'll find out after I get off of the Elmiron! | F | 26 | 1 months | 1/20/2009 | 4 | IC | None. Maybe a tiny bit of hair loss, but it's hard to tell. | When I first got IC about three years ago all I could eat was rice and oatmeal without my bladder getting upset. Three years later I can eat jalapenos, hot sauce, chocolate, green tea and a little decaf coffee (though I have to be careful not to push my luck too much with those last two). So I would say yes, it's helped big time! Both my mother and sister have been on this since the 90s and it helped both of them also. My mother still has to take it religiously but my sister (who has the best case of all of us) only has to take it once in a blue moon or during a flare. | F | 33 | 3 years | 1/17/2009 | 5 | IC | None to date. | Started taking Elmiron (100mg x 3/per day)after several different treatments for IC were not working prior to May 2004. After being on Elmiron for approx. five weeks I experienced almost 360`degree change in my life. Looking back over my life I believe I have had IC for almost 30 years with gradual increase of IC symptoms as I aged. | F | 55 | 4 years | 1/6/2009 | 4 | radiation cystitus | Bloating and gas | I began taking elmiron for the treatment of radiation cystitus after passing blood during urination. I take 100mg 2 or 3 times a day. After 3 weeks I was able to resume a full schedule and have not passed any blood in over 6 months | M | 68 | 7 months | 12/16/2008 | 5 | IC | I have had a bit of hair loss, when drying hair or in shower, but nothing noticable to anyone else. I get a lot of gas and bloating. | I have suffered with IC for so long I can't pin a date down. It was always thought to be bladder infections. When my doctors started insisting on cultures every time I thought I had a bladder infection, they started to come back negative. Then I got properly diagnosed by an expert named Dr. Harold Drutz, at Mt. Sinai Hospital in Toronto, Canada. I have taken the drug for around 3 years and very rarely get symtoms. I tried going off the drug this summer and the symtoms returned with a vengence. The Doctor told me I may have to be on the drug for life. Which concerns me, but the alternative is worse, living like you have to go to the washroom every second with burning is no life. Also, I did have to stick with it for a few months before it started working. I take only 2 pills, morning and night, I always forget the middle of the day, but it still works for me. | F | 44 | 3 years | 11/21/2008 | 3 | IC | I have been taking the drug for about a month now. I'm on 400mg a day, and it has seriously increased my blood pressure. My blood pressure is through the roof, and my heart pounds out of my chest. I'm shaky and anxious. While it has stopped my symptoms, I don't think I can continue to take the medicine because of the side effects. | I love the pain relief. I wish there were alternatives without such drastic side effects. | F | 30 | 50 days | 11/18/2008 | 4 | IC | I have had terrible headaches when I started taking this medication. It almost feels like my head is going to blow up. I have stopped taking it a few times and then the pain from the IC flairs up again. I wish there was something else to take than this. I hate the headaches. | It is kind of a pain to remember to take it an hour before meals or two hours after a while. There are times I forget. | F | 32 | 1 years | 11/11/2008 | 1 | IBD | In 2004 I was told I had IBD from chemo and put on Elmiron because "it is known to heal this problem in some people." HA. It gave me kidney stones! The first and only time in my life. In the hospital alone I passed 15 of them. The urologist did say Elmiron "is known to cause stones..." LOVELY. | I don't remember how long I was taking it, but I'll never take it again, or any chemical similar. I now drink cumin seed in all water, I'm so afraid of getting stones again. | F | 68 | 8 weeks | 9/1/2008 | 1 | ic | headaches.really bloated | seems a long wait,to see if it's going to work,plus really worried about side effects. | F | 46 | 14 days | 9/1/2008 | 3 | IC | I have had an elevated heart rate. I feel like my heart is going to pop out of my chest. Has anyone else had these symptoms? On the flip side, my bladder spasms have all but stopped. | F | 40 | 4 days | 8/29/2008 | 1 | IC | I started Elmiron three weeks ago for IC which I have suffered with for over fifteen years. I began breaking out two weeks ago with horrible itchy rash after starting the Elmiron. I went to see the dermatologist and the doctor who perscribed the Elmiron and was told to stop. That was one week ago and I'm still breaking out one week of stopping the medicine. I was put on Medrol(Predisone) 4mg ,Topicort gel and told to take Benadrly .The rash is getting worse . Rash started on back of arms and within one week was on all limbs, chest and now neck.I'm still itchy and sratchy Is this normal? | I'm terrified to go back on , due to the fact the Doctor said I could in up in the hospital in some kind shock. Also the reaction would be much worse | F | 51 | 3 weeks | 7/6/2008 | 5 | IC/PFD | None | Besides taking Elmiron I was undergoing Pelvic Floor Dysfunction therapy. I would recommend both men and women to read a book by David Wise called "A Headache in the Pelvis: A New Understanding and Treatment for Prostatitis and Chronic Pelvic Pain Syndromes". It helps to understand what causes the pain in the pelvis and how to deal with it.You'll feel better after just reading it. | M | 43 | 1 years | 6/11/2008 |