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 |
| 1 | IC | sick feeling all the time!! | I rather feel like I have to pee all the time then to feel sick all the time or live in the fear of losing my hair, having stomach problems whatever else. I think if the drug worked for you then that is great but as I read and find out more info about this drug, it seems I have a 50/50 chance of it working or having to deal with more pain from the side effects. I am done, I not taking a chance at ant of the side effects. A drug that makes your hair fall out or headaches all the time theres got to be something wrong here. Dont u think? Good luck to all with IC but for me I will stick with the intalashions every week. Forget the drugs!! | F | 24 | 2 weeks 30 MG 3X day | 12/29/2010 | 1 | IC | I was on this for 6 months, and my bladder felt worst, then I started having stomach problems. Now blood and mucas in my stools. Its not worth it. My doctor said it only works in 2% of people. It cost alot of money. And I had terrible hair loss. | Didnt work for me caused more problems. Now I have to go have a colonoscopy done, and a endoscopy. I am terrified. | F | 51 | 6 months 100 mg 3X day | 12/29/2010 | 1 | blood in urine, constant pain | I have only been on it three days, and i have horrible gas, and horrible cramping in my back side and front, it feels like im going into labor, it is brutal. I also feel constipated but like i have loose stools at the same time. I am only 17 | scared to keep taking it because of pain | F | 17 | 3 days 100 3X day | 12/5/2010 | 2 | IC | Not working | I have been on this for 6 months and my hair has thinned out, I have stomach and alot of gas now blood in my stools. I have an app tommorrow with the doctor, to see whats next. And it cost 400.00 a month, I have insurance but we have a high deduct. Dont know if I should stay on it longer... | M | 51 | 6 months 100 mg 3X day | 11/29/2010 | 3 | IC | Headaches, Hair Loss, Blood in the stool | The pills are working. I went from 20 or more times a day, now only 10-13 times. | F | 34 | 5 months 100 MG 3X day | 11/22/2010 | 2 | ic | I have had bad nausea, some headaches so far. I havent been taking very long I it hasnt really helped with the pain yet. | F | 28 | 1 months 100 3X day | 11/16/2010 | 4 | Possible IC | I've been on Elmiron for 2 months. As of yet I haven't experienced any side effects. I was experiencing extremely painful urination for over a year and ahalf, saw 11 doctors and they told me that they had no idea why I was burning so bad upon urinating. Finally, my gyn suggested that I may have IC and I immediately went on the IC diet along with the Elmiron. Within being on the IC diet for 2 days I felt about 80% better than I had in a year and ahalf. The IC diet definately works if you are experiencing very painful burning upon urinating. | F | 49 | 2 months 30 3X day | 10/31/2010 | 3 | IC | Extreme migraine for the first 3 days, brief bouts of nausea. After that, I was doing well, with only minor flares. However, I started to become more and more constipated with this drug despite using everything to try and combat it. I stopped it a week ago and have been in severe pain since then. I am going to start taking it again. | Costs a fortune without insurance. I can't afford most things because I have to pay for this drug. | F | 24 | 4.5 months 100 mg 3X day | 10/31/2010 | 1 | IC | This relieved the pain, but by the 4th month my heart rate jumped drastically. Around 120 resting rate. I felt dizzy and fatigued. It felt like my heart was going to pound out of my chest. I've stopped the meds and hopefully my heart rate will go back to normal. Elmiron worked really well for me, so I'm sad I have to stop taking it. | F | 24 | 4 months 400 mg 2X H | 10/18/2010 | 5 | I have IC | Havent experienced any side effects on elmiron | Hi im 19 and have been suffering with bladder problems since middle school... I remember being in the cafateria in 8th grade and then feeling this awfull pain that i didnt even know how to describe to my mother. Since then it just got worst many visits to hospital and many doctors who didnt know what to do with me fianally i was sent to a urologist Dr. Alvarez, Tampa, fl ... So far i have done two elmiron instilations out my six and felt better after the first one the doctor put me on oral elmiron yesturday havent felt bad in two weeks i hope im not jinxing myself but i feel great and am excited i feel like i can finally have a life! I just want to hug my doctor! | F | 19 | 2X day | 10/13/2010 | 1 | IC | For all of you out there suffering with this disease, as I do, I would strongly recommend that you consider herbal remedies. Juniper Berry, Uva Ursi, Parsley, Dandelion Root, Chamomile, Cornsilk, Gravel Root, Bucha, Yarrow, Red Clover, Chaparral work wonderfully! I was told that there was no cure, nor drug for IC. That is what led me to my search for a natural remedy. This is not a cure though. This must be taken for as long as symptoms persist. I do not know the dossage of each, because I went to an iradologist (One who looks into the iris of the eye to find problems. This is not a joke! By looking into the iris, there are dark spots, which indicate a problem in a certain area of the body. This is not supernatural either, as I wouldn't be part of any such thing. Look up iradology for yourself online for a further explaination, if desired.) Be sure that you are seeing an iradologist who is experienced with all herbs and their healing properties. (Afterall, many man-made drugs are made from herbs.) | F | 34 | 0 days 1X day | 10/11/2010 | 3 | IC | I'm just noticing some hair loss around the edges of my hair line. I'm severly anemic (not sure if this is related to taking Elmiron). I do suffer with bloating in the belly area and have just started to notice acid reflux and indigestion (again not sure if it's related to taking Elmiron, as I have developed IBS as well. | I was diagnosed with IC about a year and a half ago, and right after being diagnosed is when I started taking Elmiron. I'm also taking Elmiron in my instillations (bladder cocktails), which I try to get 2-4 times a month. Not totally sure if it's the combination of Elmiron being taken orally and through the instillations that are helping, but it's helping definitely with the pain. The ironic part of this all is when I was initially diagnosed with IC I didn't have urgency and frequency, just grave pelvic pain and now after about a year and a half, I have urgency and frequency, go figure?? Due to the hair loss, I decided to stop taking Elmiron for a while and see if any of my sides affects disappear or get worse, but I'm still getting the instillations twice a month. I'm not giving up because I've come a long way from where I was a year and a half ago and even though I still have some bad days, it's definitely not as much as it used to be! Keep the Faith!!!! | F | 42 | 1.5 years 100mg 3X day | 9/22/2010 | 1 | Mild IC | I stopped 2 weeks ago and hair is still coming out at the root. Brush full every day. Blurry vision, bloating, cloudy thinking, fatigue. Not worth it. | I took one pill a day for a month since my symptoms were not very bad. Stopped 2 weeks ago and started taking Cystoprotek. No need to go bald yet. | F | 24 | 30 days 100 3X day | 8/23/2010 | 5 | IC | Bloating | Within 5 weeks my symptoms are greatly reduced. I am thrilled with Elmiron and I also feel like I have my life back. Does anyone have any recommendations about the bloating? I was interested to read that people had been experiencing hip pain. I have also been experieincing hip pain prior to the Elmiron. It would be nice if that went away. I also had swelling and cysts on my face surrounding my moles. Since I have been on the Elmiron the swelling is greatly reduced. I may be seeing an increase in blood pressure. Not quite sure yet. I have other things going on that could be increasing my blood pressure. | F | 52 | 2 months 100 2X day | 8/15/2010 | 5 | Interstitial cystitis | hair loss | heaven sent. A life saver. You have to take it at least 9 months before seeing results but it is worth it. don't give up. | F | 72 | 10 years 100 3X day | 8/4/2010 | 3 | for intersticial cistytis | I started out with only a dry mouth, no hair loss or anything. Then I started to get numb spots on the bottom of my feet. Now my feet hurt to my knees, I am bloated, my legs are very sore. After reading the comments here I know elmiron is not right for me. Its making me worse. | I take Elmiron both orally and through an instillation. I think I will just continue the installations. It doesn't seem to be helping my IC anyway. | F | 50 | 9 months 100 3X day | 7/27/2010 | 5 | IC | No bad effects; one positive effect - my osteoarthritis is much improved. Pain in hip joints that made it hard to walk after about 20 minutes has disappeared. Mobility greatly improved. Don't understand this. Went off Elmiron for 3 months. The joint pain reappeared. When I had to go back on Elmiron, the hip pain disappeared again. I've contacted the company that makes Elmiron about this. Think some research needs to be done. This may be an effect only with me. | Was in pain for about 2 years before I finally found someone who could help. Could not move without causing pain. Frequent urination. Symptoms similar to others on this site. Took a road trip of about 800 miles and found riding to be excruciating. When we got back before we even drove home, I'd called the doctor and went straight to his office. Not much relief or understanding. I had a hard time finding someone who could make an accurate diagnosis and offer treatment that gave relief. Took Elmiron for nearly 4 months before I had any relief from the pain. My urologist started me on four 100mg capsules a day. After 2 years, I started to decrease my dosage since I worry about side effects. Went to 3 pills per day, then 2, then 1, and finally went off all together. Have started back up in the last few weeks. Only taking 2 per day now. No bladder pain now. | F | 62 | 28 months 100 mg 2X day | 7/5/2010 | 4 | IC | I am one of those rare cases of men with IC and, like other posts, can tell you that the pain, at times, is unbearable. While Elmiron is effective, I got the most relief from a combination of Phenozaforte Plus, Elmiron and Lorcet. Three days ago stopped taking Lorcet, increased dosage (as instructed by MD) of Elmiron and continued Phenozaforte. The pain has increased steadily as has the GI issues. Lorcet may have been the most effective medicine or may have been simply masking continuing IC pain. UPDATE: After seeing MD, the increased pain is the result of a sudden onset of prostatitis and unrelated to Elmiron. GI is probably Elmiron related. Now taking 100mg twice per day. | M | 39 | 2 months 100 mg 2X day | 6/18/2010 Patient History | 5 | Easy brusing, stomach burning, thats about it!! | This drug has helped me a great deal, or so I think it is this drug I am soon to find out. I hate taking drugs, I feel like they help with something and hurt something else so I am going to keep looking for natural ways to cure this... I am not giving up! But for right now I am glad that at least something helped with little side effects. I am concerned however about my stomach burning I do not want this medicine to cause me stomach problems. Getting back to wether I dont know if this is what is really helping me, I am going to find out when I stop taking it in another month... I just plan Another reason might be that I have also changed my life and my diet. Things that I have seen aggravate my IC are ALCOHOL,SODA,AND COFFEE! I feel that SODA is the worst, we drink too much SODA! it is so bad for us, specially black soda and diet .I sucked to find this out cause I love soda 3-5 times a day! oh well I have to do what's better for my health. I love all of these but it is not worth it. I can't cheat drinking these cause I pay for it later. Here is a website that I hope can help you guys, it was life changing for me and they helped me when I was very,very depressed. WWW.IC-NETWORK.COM This illness is embarrasing for me, I feel like I can't find work because I always have to go to the bathroom,and I don't know how some of you deal with it. But the web site I mentioned helped me A LOT! It's my life and my body and we have to find something... I have changed my diet tr | F | 23 | 2 months 100mgs 3X day | 6/10/2010 | 5 | IC | No side-effects at all. Took about 6 months for most of the pain to stop. Now I have none except when I get stressed out and am on my feet alot with loss of sleep, which seems to happen about once a month. | The doc also prescribed phenazoptridine for the pain. They are those pills that turn your urine orange when you have a bladder infection. Take them about once a month for maybe 2 days. They are wonderful for me. I can go hours without even thinking of going to the bathroom. Takes away the constant urge | F | 54 | 3 years 200MG 1X day | 5/12/2010 |