ELMIRON Reviews (PENTOSAN POLYSULFATE SODIUM)Average Rating: 3.3 (240 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.) |
| RATING | REASON | SIDE EFFECTS FOR ELMIRON | COMMENTS | SEX | AGE | DURATION/ DOSAGE | DATE ADDED |
| 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 | 2 | IC | After taking this drug for 3 years, I finally realized that this drug was irritating my bladder. After I stopped taking it, my frequency improved greatly. | F | 45 | 3 years 100mg 3X day | 4/8/2010 | 4 | IC | GI problems; stomach, bowels. | My doctor prescribed this along with Meloxicam, which is a strong anti-inflammatory for rheumatoid and osteoarthritis. Between the 2 of them, they worked very well for the IC pain but one or both appear to have done some serious GI damage, and I am now undergoing many tests to try to track it down. I was OK before I started these. For years, I have found Zantac 150 (yes, the OTC antacid) 2 - 3 times a day to be very helpful for my IC. When I told my doctor, he said, sure, because IC is a histamine response of the body and Zantac works against histamine. So I went back to it. Zantac by itself does not work as well as Elmiron, but it helps a lot and I don't have the side effects like I did with Elmiron. I also used to take Cystoprotek and found that helpful as well; will start again with Zantac 150 and leave the scary drugs alone. Best wishes to all who have this awful condition. | F | 53 | 6 months 100 MG 3X day | 3/18/2010 | 3 | ic | SEVER BLOATING, SWELLING IN ARMS, ABDOMEN, AND LEGS. HEADACHES, LUMP FEELING IN THROAT, NAUSEA, ACID REFLUX, DIZZYNESS, TIREDNESS, NO ENERGY | IT DOES SEEM TO HELP MY IC SOME, BUT THE OTHER SIDE EFFECTS TOGETHER ARE A LOT WORSE THAN THE IC, AS HORRIBLE AS THE PAIN IS WITH IC. I THINK I AM GONNA STOP. I HAVE EVERY TEST RAN ON ME, AND THE ONLY CONCLUSION WE COME TO IS THIS MED | F | 29 | 3 months 100MG x2 2X day | 3/16/2010 | 4 | IC | Headaches stopped after 3 days, No hair loss, Mild dizziness in the beginning. | I now urinate 12 to 15 times a day. Down from 20. Still wake up every 2 to 3 hours at night.Once the constant burning stopped figured I'd try a couple cups of coffee. I got a way with it the first day. Paid the second. Had some cookies that had citric acid in them.Wont be doing that again. In short as long as I stay on the approved IC edible list I'm OK. SO starting today I plan to try just the diet and substitute the extremely expensive ELMIRON with 1,500mg Glucosamine plus MSM 1,500mg, and 1,000mg of Quercetin. This combination is suppose to coat the bladder and take the pain away. Stay Tuned | M | 59 | 100 mg 1X day | 2/23/2010 Patient History | 3 | IC | Swollen tongue, feeling irritation inside my mouth and numbming oan tingling feeling inside mouth | F | 42 | 5 years 100 mg 3X day | 2/22/2010 | 3 | Hypercoagulation and IC | Hair loss started at 6 months... all over not just one spot. | It seemed to help my IC mildly. As a blood thinner, it is not very strong. I am really bummed about the hair loss! It looks pretty awful- about half gone and it is not letting up so I am going to stop this medication. | F | 42 | 7 months 3X day | 2/7/2010 | 1 | IC | Some dizziness when standing and IBS but the worst experience was a ponding heart beat that occured after about 2 years. I opted to stop the meds and the pounding stopped. | While I used the drug it seemed to work well and eliminate the problem but the pounding heart beat was too much to take and I stopped the drug. | M | 62 | 2 months 200 mg 2X day | 2/4/2010 | 4 | IC | So far just headaches, and they went away after the 3rd day. I shave my head so I'm not sure regarding any hair loss. Had to go to 3 different Urologists before I found one that knew about this drug. | I urinate 17 to 20 times a day. I'm happy if I can sleep 2 hours straight before having to get up. Problem is I brought this on myself. I went dehydrated while overseas. I'm never thirsty, don't even drink with meals so when I started urinating blood clots that got my attention.I now have IC. Now that I know which foods to stay away from I can pretty much control the pain, I just need a decent nights sleep. Looking like a zombie is starting to scare people. | M | 59 | 5 days | 1/25/2010 | 1 | I C | I have never taken it . . . | I have had IC for about 6 years, came right at menopause . . . I haven't ever taken this drug, but wanted everyone to know that ACUPUNCTURE can be VERY helpful, and there's no harmful side effects - please consider giving it a try! Just make sure you find a licensed, knowledgable practitioner. I go once a month, cost is $85 for about a 1 1/2 hour session. If you're lucky your insurance may cover it. | F | 54 | 0 days | 1/21/2010 | 2 | IC | Horrible Headache , Difficult to Swallow. | The side effects out weigh the supposid benefits , of which I saw None. Stopped out of Frustration. | F | 25 | 6 months | 1/2/2010 | 4 | IC | Headache initially, but that subsided. | I felt better by the end of the first month, but I stopped because it was so expensive. $300 for a one month supply with my health ins. prescription card. I'll try to treat this with diet until a generic becomes available at a reasonable price. | F | 45 | 1 months | 12/16/2009 | 4 | IC | CONSTANT HEADACHE, FEEL TIRED ALL THE TIME, I AM FOLLOWED BY A PHYSICIAN REGARDING HIGH LEVEL OF TROMBOCYTIS IN MY BLOOD.. MIGHT BE CAUSED BY ELMIRON BUT UNCERTAIN AT THE MOMENT ( WOULD BE THE FIRST TIME... . ELMIRON HAS RELIEVE MY IC SYMPTOMS URINATION FREQUENCY DROP FROM 25X A DAY TO ABOUT 10. | M | 33 | 15 months | 12/7/2009 | 5 | IC | NO side effects. | Elmiron Really helped me, it took a few mos. I am pretty much symptom free now. Haved taken it for 16 mos, able to cut down to once per day. Also a big help is the supplement CystoProtek, available online.......my uro clinic says other patients report that helps them a lot too. Those who can't take Elmiron may want to try the CystoProtek....formulated by top IC researchers. | F | 56 | | 12/5/2009 | 5 | Interstitial Cystitis | I would say none, but after reading everyone else's side effects, there are two things I experience that could be attributable to the Elmiron: I bruise fairly easily and sometimes get some really nasty ones. I've always assumed it was because I'm borderline anemic. Also, I've noticed over the last two years or so, when I get a headache (usually the result of a hangover or the flu), they are excruciating, and often don't completely go away for two or three days. Perhaps the Elmiron just makes the headaches more intense, as I said, they are always triggered by something else. | I now eat and drink just about anything I want. I do notice a few things still affect me, but this drug is fantastic! I never experience pain during intercourse anymore and the frequency of my urination is usually normal. I do notice if I stop taking it for a couple of days or only take it sporadically, my symptoms begin to return. Once I'm back on track, they disappear again. I will gladly keep taking it for the rest of my life. | F | 34 | 6 years | 11/23/2009 | 1 | IC Bladder Ulcers | Sore throat , headache , sinus pain , diarrhea , and minor hair loss. | This medication has many side effects for me. | M | 57 | 3 weeks | 11/18/2009 | 3 | IC | Hair loss. Possible skin problems. | Definite problems with hair loss. I'm not sure if the peeling skin on my hands and rash on my arm is a result of the medication or something else. My doctor has recommended that I discontinue taking the medicine. | F | 55 | 4 months | 11/8/2009 | 5 | IC | headaches at first, stopped after 2 mos | It has given me my life back. | F | 53 | 3 days | 11/3/2009 | 4 | Interstitial cystitis | none | Has helped the burning. Still have frequency, but feel much better. Also taking elavil and following the IC diet. This combo works well. Able to sleep through the night | F | 17 | 1.5 years | 10/27/2009 |