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 | None noted until today. I have had no elmiron since Friday,today is Sunday, due to a delay in mailing on my pharmacy's account. So today I have noted lots of extra heart beats or flutter as my momma use to say. Have had these on very rare occasions but this has been all day and frequent. This is the only thing I can attribute it to, since there have been no other changes. | Extremely expensive, ridiculously so. | F | 62 | 10 months 100mg. TID | 6/14/2015 | 4 | urinary pain ic | Hair loss snd gi. Distress. | Scared of long term usages. | F | 56 | 5 days 3oo mg gd | 6/10/2015 | 3 | Intercystial cyatitis | Was doing ok on it. Insomnia , and severe anxiety has started and depression | It works wonderful doe the cystitis but would rather go through the pain of that than anxiwrty | F | 44 | 9 months 400 mg | 5/4/2015 | 5 | IC | The only side effect I had was hair loss. I slowly started to try to wean myself off the drug completely this year after 3 yrs on. First 2 a day then 1, then every other day etc. Now I take Vit e and biotin only . I still have the rx and take it for a day / week here or there if I start to get symptoms . | F | 43 | 3 years 2xd | 4/24/2015 | 3 | IC | Extreme fatigue, depression, itchy skin, rash | While the medication has worked well for my IC (having seen results in about 2 weeks); I've come to the conclusion that I rather have bladder issues than be depressed and tired. Hopefully, there is some other medication that can help me with my IC other than Elmiron | F | 40 | 1 months 100mg 2X day | 3/27/2015 | 1 | interstitial cystitis | This medication gave me Crohn's Disease | There is nothing in the literature that I have read that alerts patients of the possibility of acquiring Crohn's Disease. Now I have this awful disease that I will have to deal with for the rest of my life. It affects me on a daily basis and has the potential to be deadly. I would rather put up with the pain from the Interstitial Cystitis than deal with the effects of Crohn's Disease. Now I have to deal with both. | F | 52 | 2 years 200mg 2X day | 3/5/2015 | 4 | IC | None initially but I have developed significant health problems over the past 10 years that I now suspect are due to this drug. I took 300mg/day when I started for horrible pelvic pain, bladder spasm, frequency of 20-50 trips to the bathroom per day to pee. It took about 3 months for improvement with few side effects, it gave me my life back. I also began taking 75mg of Elavil per day and the combo worked well. I had two lower GI Bleeds prior and this was likely due to Accutane I was taking at the time. I now have a lot of symptoms, I think are due to Elmiron but I am scared to death of the IC - which had me on disability unable to do anything - getting worse again. | I now have: abnormal bone growth (coccyx and spine, pelvis causing bilateral hip impingement) pathologic fracture tailbone, progressive scaring/clouding of corneas, intermittent blurred vision, profound sensurineural hearing loss in one ear with tinnitus (happened last year suddenly) I now need hearing aids and can only hear in certain environments. I began to suffer from severe hemiplegic migraine with aura, skin rash - face and body, joint pain, elevated CRP and SED Rate, I have gained 50lbs and look swollen, my face shape has changed,I have had cerebellar dysfunction, changes in nails &skin, rectal intussuption, numbness in thigh, numbness and tingling in feet and one hand, enlarged lymph nodes and salivary glands and so on. Recent research leads me to believe Elmiron may be causing a build up of GAG ( glycosaminoglycans ) in healthy tissue causing similar symptoms as those who suffer Lysosomal storage disease due to genetic mutations where they lack the enzymes needed to break down GAG's so they don't build up. Recent rat studies with Elmiron showed this phenomena, including significant GAG in the tissue of the rectum (we all seem to report GI issues), clouding of corneas, heart valve issues and more. I am still researching but have a feeling Elmiron has the capacity to cause this build up and create a non-genetic lysosomal storage disease. This needs to be investigated further. I have yet to mention my lysosomal storage theory to a doctor,I just discovered the resea | F | 39 | 19 years 100 mg 1X day | 2/28/2015 | 1 | interstitial cystitis | explosive diarrhea, bloody stools, anixiety, depression, high choloesterol, insomnia, lymphyicitic colitis, neuralgia | After going through two urologists and then being placed on Elmiron by the third, I thought that Elmiron was a life-saver. I would tell myself, thank god for Elmiron; ignoring the horrible side effects, constant search for a bathroom, and made to see a gastroenterologist every 3 months. Year 7 I started to feel horrible. Problems sleeping, depression, anxiety, significant weight loss and then a horrible pain in left lower quadrant. Expensive medical tests, and diagnosed with lymphacitic colitis. I went off of Elmiron in December of 2003, I was put on by a mental health professional low dose of effexor, and eleavil. Later a pain specialist added gabapentin and it has helped reduce the pain of i.c. Now that I am in menopause, I notice some flares. I just talked to a gastroenterologist that told me that Elmiron does cause lymphocytic colitis! | F | 51 | 7 years 100 3X day | 2/24/2015 | 1 | IC | I lost all feeling in my left arm. Nausea all day long.Didnt feel like myself. | It should be taken off the market. | F | 51 | 5 days 100mg | 2/16/2015 | 2 | IC | I'm having body muscle spasms, I feel horrid but I'll keep trying to take it to see if it improves. Will try anything at this point. I'm taking 100mg 3 times a day | F | 42 | 3 days 100mg | 2/11/2015 | 5 | Bladder spasms | No side affects | I'm glad my dr put me on it I don't have to run to the bathroom all the time | F | 61 | 1 years 4 daily | 2/1/2015 | 4 | IC | It has been effective, but the side effects are quit disagreeable. I take it off and on and stop when I cannot bear the side effects. The side effects have been : hair loss, which did not grow back, gas, diarrhea, reflux, and severe bruising, and rectal bleeding. Right now, I have been in a flare and my Dr. Has advised me to resume it. So far In have not. Instead, I have been taking Desert harvest Aloe Here with Quercitin, also Cysta Q, If I have not had any improvement by next visit, then I will resume it.. It is an effective drug, but difficult to tolerate. | Regarding the cost, consider ordering from Canada. For me, the cost there is less than my co payment | F | 67 | 20 days 100 3X day | 1/24/2015 | 4 | IC | Some hair loss...I think...a bit of heartburn...and MAJOR fatigue. | An edit to my post from 1/17/09. I did so well on Elmiron (and the Lexapro + Trazadone that I eventually added) that I went into *complete* remission. No symptoms whatsoever and I could drink regular coffee every day and eat normal food...was great while it lasted. Unfortunately I pushed my luck a little too hard. After one too many flares from overindulging in coffee, trying Adderall, chinese red peppers, stress...well the bladder finally gave up and now I'm definitely out of remission. Only this time I'm actually noticing side-effects from the Elmiron, unlike the first time. I'm so tired I can barely see straight and I know it's not my vitamins or thyroid because I've had that all checked. I'm considering having my liver function checked...the severe fatigue and my recent elevated iron levels have made me suspicious. I still think it's a good drug and it IS helping, but it would appear the lesson here is your body *may* respond to it differently from one year to the next. | F | 39 | 100MG 2X day | 5/7/2014 | 1 | IC | I took this drug 2004-2006, I continue to suffer the effects from the drug. It was a "miracle" drug. It worked wonders. I started to notice major bruising on my body, so, my doctor ordered a liver enzyme test. The results as he said were "slightly" elevated. He told me to continue the dose since it was a low dose. My bruising became more severe and I ended up in the hospital for 10 days. My platelet count was dramatically low, so low, that I had to go through none marrow test for leukemia. I had damage to my liver and my spleen. All of this was caused by the elmiron. It took 2 years and lots of visits to an oncologist to my platelets to get back to an acceptable level. Now, I have heart issues. My valve is not working properly and I will have to surgically repaired or replaced. I have 15 Aunts and Uncles, 2 sets of Grandparents and my own parents and there is NO HISTORY OF HEART problems. I now have an inter-stem device implanted in my back which has been a non-drug life saver for me! | F | 58 | 2 years | 4/24/2014 | 5 | ic | Some hair loss. | F | 66 | 1 days 6 pills/da | 2/4/2014 | 5 | IC | Elmiron works! But you have to stay on it for a least 6 months. The only bad thing for me is that my hands are swelling and have pain. I rather live with that then IC, that is a nightmare!! | F | 50 | 9 months 100 3x Day | 10/5/2013 | 4 | IC | Increased Bleeding, wounds take longer to heal, moles are increasing in size and numbers. | I suffered for 6 years with IC without knowing it, I saw several specialists, all who assumed it was a prostate issue. I finally found a urologist who did a scope and determined IC was the issue. Though rare in men, it does occur. He prescribed Elmiron, citing it was the only thing that will help. He did inform me that it will take up to a year to see any improvement. I have been on it a year now. I have seen a huge improvement over time. If you are just starting, stick with it ! it isnt a cure all, but it helps with the symptoms tremendously! If no prostate medicine or treatment is working, insist on a scope of the bladder ! | M | 39 | 1 years 100 MG 3X day | 9/25/2013 | 4 | IC | Sometimes more than 1 BM in a day, bloating (I hope not weight gain) lots of gas & sometimes nausea. | Not sure how long anyone should stay on it. | F | 64 | 3 days 100mg 1X day | 9/18/2013 | 1 | Interstitial Cystitis | Feel absolutely horrid since starting Elmiron!! Foggy minded, weak, fatigued, anxiety, and SEVERE moodiness!!!! This medication is terrible! Called the doctor this morning and she said to decrease to 1 pill daily. I'm stopping all together!! I'd rather live with the IC then like this! It's horrible!! | F | 30 | 1 weeks 100mg | 8/23/2013 | 2 | IC | I've never had urinary issues and randomly woke up one day in pain and after four months of hell and different doctors, I finally found one who took me serious. They went inside my bladder and I 100% have IC. I've been taking elmiron and don't really know if it's helping. One week after I started it, I started having blood in my stool and now do so every time. I also have noticed sores and blood in my nose the past two weeks and after reading reviews, I'm concerns it may be the elmiron. I have been skeptical of this drug just because of the numerous bad side effects and the very low success rate. I will be discussing this with my doctor at my next appt. I've also had very "foggy" mind. I constantly forget things and sometimes can' t remember things at all. I'm concerned that may be from this med as well. | F | 23 | 3 months 300mg /day | 8/20/2013 |