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 |
| 3 | IC | At first I had some relief. I had less frequent trips to the bathroom because it helped me hold it longer without any pain.But then I started getting nauseous alot and had real bad stomach pains. I figured it would ease up but never did.The side effects actually got worse. I started having bad headaches and upset stomach all the time. I know living with IC is horrible but what's the point of taking the medicine if it is gonna make me sick all the time. | F | 28 | 1 months 100 Mg x 3 | 8/1/2013 | 4 | Pelvic pain - surgery diagnosed IC | When I first started taking the meds, it significantly improved my pelvic pain caused by IC. I never noticed my side effects as much until I was off of it for the past month due to shoulder surgery. I've been back on it regularly for the past week and have realized how terrible I feel taking it again. I constantly feel sick to my stomach and extremely fatigued. Also, for the past month without it, I only experienced my pelvic pain about two days, but had worse problems with my pain associated with early morning bathroom trips. I'm considering contacting my urologist to lower my dose. IC is terrible! I always feel like its a trade off between pain or feeling sick to my stomach!!! | F | 24 | 1 years 3X Daily | 6/16/2013 | 1 | IC | Sleeplessnesss, 4 to 7 trips to the rr every night, ringing in my ears, gastric pain and pressure, headaches, blurry vision. | I have only been on this for 1 week and I can't imagaine continuing when its already this bad. My gyno had put me on birth control to stop the ovulation and I had been seeing some major impovement but then I started ELMIRON and I feel like Im back where I started. As of today Im off ELMIRON. | F | 48 | 7 days 200 mg 2X day | 6/14/2013 | 5 | severe pelvic pain | Ringing in my ears (maddening) Kidney function down Depression Fatique | Elmiron has worked very well for the pain. It's sad you have to make a decision between severe pelvic pain and ringing in your ears. I wouldn't wish IC on my worst enemy. I recently stopped taking the medication with the hope that the ringing in my ears would stop but only after 1 1/2 wks without it, the pain has returned. | F | 66 | 6 months 200 MG 2X day | 3/27/2013 | 5 | IC | loose stools; dizzyness (went away after 4-5 mos.) | I rated this because I am male and all other posts are from females. The drug has not cured me, but it has improved the quality of my life significantly (along with avoidance of certain foods and drinks). IC has stopped me from exercising vigorously and from riding a bike; unfortunately the improvement brought about by the Elmiron has not been sifficient to allow me to continue these activities. | M | 60 | 5 years 200 2X day | 2/9/2013 | 3 | Headache, and droression | F | 29 | 1 weeks | 1/19/2013 | 1 | ic | This drug is the devil. it gave me seizures and sucicdal anxiety. I do not have any mental issues at all. my anxiety was totally induced by this medication. in addition to this it made me very sick nauseous and feeling confused and intoxicated. After stopping the medication my ic symptoms were much worse with extremely painful urination. I also have invasive breast cancer and read that it can cause invasive breast cancer cells to multiply. i would rather suffer from the ic than die from breast cancer. i have no idea why the doctor gave me this medication in the first place. Do your research before taking this medication. | F | 49 | 14 days 100mg 3X day | 1/19/2013 | 3 | Unknown case bladder pain nightly | I just started this today. Stomach ache. Dr. is not sure I have IC but we have tried everything else (prostrate meds, desmoprssion, even lasix). I get up from pain every night at least 4 times yet have little urine and when I urinate the pain goes away. No problems in the day. I'll keep you all posted. | Has anyone tried nerve stimulation as well to imprive things. That is also prescribed for me startnig next month - 12 sessions. | M | 60 | 1 days 100MG 3X day | 1/17/2013 | 1 | IC | Was very excited at first to see how much my insurance covered of this medicine because it is SO expensive without it. I started with 100 mg twice a day and increased the 2nd week to 3x a day. Over the next few weeks I felt extremely depressed, hair was significantly thinner and falling out any time i brushed my hand through it. I started to go #2 all times of the day, sometimes up to 10x a day. I lost 12 pounds and had to be checked out. Liver function levels and Iron Storage were SKY HIGH and I'm a usually healthy 23 year old besides my IC issue. The doctors suggested I go off the Elmiron so they could figure out the cause of this. 47 blood tests, 2 cat scans, and 1 MRI, 1 lymphnode biopsy, and 1 colonoscopy later and 8 weeks of my life thinking I was dying they concluded this was a bad reaction from the Elmiron. This drug was absolutely horrible. If it works for you, I'm happy for you, but this drug stole my life away from me, I would have rather lived with the pain and frequency t | 23 | 6 weeks 100mg 3X day | 11/16/2012 | 1 | IC | Extreme pelvic pain | I had frequent urination about a year ago. Like sometimes 8 times in an hour. My doctor put me on a medication that did help but it was a cream(hormone related) because I have a partial histerectomy. It has been a few months since and now have extreme pelvic pain and has put me on Elmiron. After reading alot of these stories it scares me. ALOT. This is the first day taking and am hoping it works for me. Good luck to everyone!! | F | 31 | 1 days 100MG 3X day | 10/26/2012 | 5 | IC | None so far, but noticed an uptick in IBS symptoms in recent year, so considering dropping back the dosage on the medication. | M | 58 | 7 years 100 3X day | 10/10/2012 | 5 | IC | terribly upsetting to GI track reflux, intestinal pain, loose stool some hair thinning | i've been on this for 8 years i gradually decreased through the years from 3 times daily down to 1.when i first started it i had a wicked headache for 6 weeks than it dissappeared and good thing started happening no pain.. i went off it completely 8 months ago. i did good for a couple months and then i ended up getting an anal fissure which is so painful my body was trying to get back to its normal routine but had a hard time. and now my bladder is having a flare up . wish i never stopped taking it. now i have a sore butt and bladder. this medicine is worth the side effects in my case. but i had no idea what an anal fissure was before this. | F | 37 | 300 3X day | 10/2/2012 | 5 | ICC | I have FM and SOO many problems (IBS, arthritis, CF, dry-eyes, etc.), So I CANNOT say if Elmiron is the cause of any or all | I was one of the chosen to test this drug 24-years ago. My wonderful doctor at SDSU diagnosed me after numerous DMSO treatments, dilating of the urethra, etc.., from other urologists (and four times going into the bladder via surgery). Thank God my Urologist was off one day and the assisting physician told me to go to UCSD where they had the best urologist (gosh, can't think of his name now). After they did the surgery (where they fill up your bladder real full to "crack" the wall and make it bleed), it was verified I had ICC. My pain was so bad that I actually considered suicide! I had to urinate approx. 20-25 x's a day, was up all night urinating approx. 10-times, was a total zombie for not getting any sleep, couldn't go on car rides, couldn't wear pants, and sex was so painful; plus I was a full-time working mother. Elmiron has literally saved my life and I cannot think what I would do if I did not have it. I had to go on Trazadone due to my amnesia from FM, and now I have a full night's rest. I am a different person. I DO have hair loss and several of the other side affects, but I cannot chance getting off of this. The reason I found this site was to see if there was a proven-successful natural herb or mineral to substitute because that is the only way to go and I know that drugs do destroy other things. The Lord is my strength and I am praying I find a substitute solution. | F | 58 | 24 years 100MG 2X day | 9/26/2012 | 2 | Interstitial Cystitis | swelling in hands and ankles, bruising, loose bowels, bloody stools, cramping, constant urgency to have bowel movement | did not notice much of a difference in the IC pain, but then I wasn't expecting much until the 4 to 5 month mark. These side effects started after the second month, really scared me. Urologist took me off the medication, claiming not to be familiar with these particular side effects. that in itself is scary! | F | 59 | 2 months 100 mg 3X day | 9/24/2012 | 1 | Interstitial Cystitis | Hair loss!! Stomach upset. And no relief what so ever. Plus it's very expensive... | F | 39 | 3 months | 9/17/2012 | 3 | IC- | Noticable hair loss, bowel pain & bleeding, chronic/urgent bouts of diarreah , ringing in ears, dizziness, occasional fast heart rate, high blood pressure | Elmiron seemed to improve IC symptoms, but the side effects, mostly the GI syptoms make me think it's time to stop taking it. My doctor also prescribed 25mg amytriptilene, which helps and I will continue with that. | F | 55 | 12 months 200mg 2X day | 9/12/2012 | 2 | IC | Horrible gas, cramping and diarrhea. The odds on the success of this med are not good. Why deal with these effects when we are already in severe pain from bladder cramping, lack of sleep, and ridiculous number of trips to the bathroom? I have been on cystoprotek for over two months and have seen great improvement. This is natural & be purchased through amazon. Good luck healing from this dreadful, life changing disease. | F | 35 | 2 weeks 300- 3x | 9/4/2012 | 3 | Inerstitial cystitis | I was supposed to start at 300 MG a day but I would get headaches and throw up and never felt good so I stayed at 200 mg and I only had nasea and headaches I had a headache constantly for a month straight I did my research and someone said that they had been nauseated all the time and the doc told them open the capsule and pour it in a drink so I tried that for my headaches and bam the headaches were gone I was so happy! I live in alaska and I believe there is something in my environment causing this disease if u will and the elmiron has helped but something around me is causing it to worsen I believe this cause I can go on vacation and drink there tap water and eat regularly and still be irritated but comfortable as soon as I get home I'm back down on the couch and sitting in baths all the time having portable heating pads on my bladder and I do wonder if elmiron is actually helping | F | 23 | 1 years 200mg | 7/30/2012 | 2 | Headaches, stomach problems, dizzy, numbing tingling feeling all over and hair falling out | I thought it was working at first, but the longer I'm on it I have more problems. I still go to the bathroom, just as much as before and I still have bladder pain and many more side affects. I think it's time to stop taking it... now my hair is falling out and I feel sick all the time. | F | 34 | 6 months 3X day | 6/2/2012 | 4 | Frequent urination and pain | I didn't have any at the first couple months. Now in my third month I have the worst gas ever....the smell lingers on. Loose stools. Bloating. A little hair loss starting. | It worked immediatley. I went from going to the bathroom every 10 minutes to every couple hours or more. But I can't take the side effects. My liver enzymes are already elvated after 3 months. I am terrified of hair loss since I already have that problem before started the Elmiron. Any suggestions on a natural remedy or diet? | F | 48 | 90 days 100 2X day | 1/18/2012 |