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 |
| 2 | Bladder Ulcers I.C. | Sore Raw Throat , Pounding Headache , Burning Sinus Pain , Diarrhea. Neck aches. | This post is in addition to my couple just below. I will have to stop the Elmiron. The side effects are making me real sick. As soon as I take it , my throat is raw , my head pounds and my sinus's burn and I get Diarrhea. Even dumping it in water is worthless. The IC Network support forum says it's the capsule that irritaes the stomach not the contents. Either way , I am sick. Going to have to go back and see the Urologist and seek alternatives for IC. I already hear there is No alternatives to heal your bladder. I don't know what to do. I need help. | F | 52 | 13 days | 10/24/2009 | 4 | I.C. | At first no side effects, but after several months began having strong urge for BM and has stayed that way. Not diarrhea exactly, but am concerned this might have bad consequences in the long run. Have had to stop taking it recently because IBS systoms have returned. | I have taken elmiron for five years and it has helped. No more bladder pain. Have changed my diet, eliminating high potassium foods as much as possible. Take it three times a day, 100mg capsules. Had to start dumping powder into the water, though, the capsule itself was irritating my stomach. I suffered with IBS for many years and it seemed that elmiron helped get rid of that. For a long time I felt really good and was able to enjoy eating again and had regular bowel movements. However,beginning last month,I began experiencing IBS again. When I stop taking elmiron the IBS symptoms go away.I'll be seeing my urologist next week and see what he recommends. | M | 65 | 5 years | 10/21/2009 | 3 | Bladder Ulcers ( IC) | Another update to my 2 post just below. I have been on this medication 6 days as of Sunday the 18th. I joined a support group for IC and was told that you must empty the Elmiron capsule into a small glass of water. That'll help eliminate the sore throat issue. It's the capsule itself that causes a sore throat > ( Odd ). | I did find out from my IC support group , Elmiron is NOT a Cure for IC , it only helps you live with it. IC is UnCurable. Just Managable with Elmiron (and Urelle/Darpaz) | F | 52 | 6 days | 10/18/2009 | 3 | Bladder Ulcers ( I.C ) | This is an update to my post below , in addition to the sore throat , I now have a headache , and bad Diarrhea. | Called the Uro doctor and let him know about these side effects , he said I have to stay on this medication , as this is the only thing that will heal my bladder ulcers. And unfortunatly , I'll just have to learn to tollerate the 3 side effects. This is Horrible. | F | 52 | 5 days | 10/16/2009 | 3 | Bladder Ulcers ( I .C ) | I have only been on this stuff 2 days and I have a real bad sore throat. Other then that , No wierd side effects yet. I hope it works quick. Urologist said 3 to 6 months to notice any improvement. That's along time to be miserable. | I just hope it works . 30 capsules is $375.00 I will be on it atleast 2 years the Urologist said. | F | 52 | 2 days | 10/13/2009 | 2 | I.C | I finally started taking Elmiron a couple of weeks ago and stopped after about a week when I began to feel nausea, diarrhea and thought maybe I had a bug since the season is changing..I also experienced abdominal pain and it seemed as though I was going to the restroom more than I had before at night. I stopped taking it and the side effects went away..I stopped because I wanted to be sure that it was the side effects and not just me feeling sick. However, for those of you that have been taking this drug longer, do we HAVE to take this forever? What is the consequence if the I.C. if not treated? My doctor tells me that it won't become cancer or anything terminal, is this true? I want to make sure that if I stop taking this drug that I.C. won't turn into something WORSE!! I welcome any responses or advice! Thanks so much! | F | 39 | 5 days | 10/8/2009 | 1 | IC | Hair loss, gas, headaches, very emotional. | It does work. It took less than 3 months for me. I think I took it less the a year overall. Since my bladder was built back up I went off it and becoming a nervous wreak with hair loss not okay with me I don't like the side effects, so when I have a reoccurrence I take freeze dried aloevera pills from Desert Harvest. They work the same without the side effects so you can take them forever. I am so thrilled. | F | 44 | 180 days | 10/2/2009 | 4 | IC | I've been on Elmiron for 10 months and started experiencing diarrhea a couple of weeks after I started treatment. Loose stools and cramping hasn't gotten better. From your experience, will this sideffect ever go away or am I stuck with embarassing races to the restroom or have bladder pain the rest of my life? | F | 28 | 10 months | 10/1/2009 | 5 | IC - interstitial cystitis | NONE | I had my disease 6 months, began to take Elmiron - my disease was gone completely in 2 months. If you take YAZ and experience IC - it might be some connection here, because Yaz cause high potassium level. Please, e-mail me if you began to have IC after taking YAZ | F | 24 | 3 months | 9/23/2009 | 2 | IC | The skin under my armpits started to peel off, and this is starting to happen anywhere I sweat and skin touches. | M | 38 | 2 months | 9/18/2009 | 5 | Severe Interstitial Cystitis | Slight hair loss, bloating, weight gain, diarrhea. | I went from taking no medication and not being able to walk across the room, and having to urinate over 100 times a day with blood in my urine to taking Elmiron 400mg total a day and feeling MASSIVE relief. I still deal with diarrhea and the other side effects are far less severe, but if I take the medication with enough time before and after eating, I feel normal. I still have to follow a low acid diet, and I use Prelief which is an amazing partner with Elmiron. My IC doctor suggested it, and the bloating and diarrhea are almost not happening. Sometimes hard to tell if weight gain is caused from IC or endometriosis that I also have but this drug has been an amazing help, and has given me my life back. | F | 26 | 3 years | 9/14/2009 | 5 | bladder pain | alopecia which began after about 3 months; hair loss (in one unnoticeable area) stopped after one year; no impact on my historically low blood pressure; perhaps abdominal bloating | alleviated the nighttime pain I experienced that radiated down my legs; in so doing lessened frequency of nighttime bathroom visits from 5 - 6 to 1 or 2(max) | F | 62 | 2 years | 9/12/2009 | 5 | Interstitial Cystitis (IC) | None. Frequency dropped like a rock. Now I only have to go 25x a day. | I too am one of those rare guys with IC. For years I thought I had a urinary tract infection, but they kept telling me no. Then, fortunately, I accidently stumbled upon an Urologist who specializes in IC. He had me pegged in 15 min (three different tests/later confirmed after they scoped the bladder. The doctor put me on a three drug cocktail (Amitriptyline, hydroxizine, and this Pentosan Polysulfate). Doctor told me it might take a couple months to realize the effects. Wooo Hooo! That night I noticed it working. This drug is great. However, like many I have read, I really only need to take 100mg 2x a day. Until there is a cure, I would recommend you try this drug. And if you still wake up 3 or 4 times a night, I would ask your doctor to see about raising the Amitriptyline (50mg does the thing for me). | M | 39 | 7 years | 9/10/2009 | 5 | IC | None - except for possible conjunctivitis (pink eye) but I've had eye issues before so it's possible it's not from taking this drug. | This medicine worked like a miracle for me. My doctor put me on this AND Vesicare. Within 2 weeks my pain was gone and I was urinating less. I have since come off the Vesicare and I am still doing well on the Elmiron. For me, it has been a blessing. | F | 40 | 3 months | 8/13/2009 | 5 | ic | hair thinning/lose, irritable bowel,dry eye,reflux these are the worst. dont sweat the small stuff like headache,nausea but good news your bladder feels good ! | i continue the med cuz i'm scared to stop after 6 years im pretty sick of it but dont ever want that pain again. i feel I got a touch of o.c.d from worring so much especially about my hair.im constantly looking in mirrors and feeling my hair to make shur its still there.even at night. am i the only one ? | F | 34 | 6 years | 7/22/2009 | 5 | IC | BEFORE Elmiron: uncomfortable urination as often as every 10 minutes, but not much volume. If I was lucky, I could hold my urine for about 30 minutes. Exhausted from nocturia. Lots of UTIs. Terribly strict diet. | ELMIRON works for me immensely. I took it for a year three years ago when I was going through chemotherapy (which caused the IC). Now that I'm undergoing chemo again, I'm back on Elmiron, and once again, Elmiron has worked its magic. I can sleep at night, and can have a functional day without urinating every few minutes. WONDERFUL. | F | 29 | 2 months | 7/15/2009 | 2 | IC | I started taking Elmiron about 4 days ago, on the second day I noticed I could not sleep. I am on day 4 and I have had about 8 hours total of sleep, when I take the medication, my BP and heatrate rises. I feel like my heart will beat out of my chest and I am wired like I am on speed or something. I am hoping these symptoms will subside and my body will get used to it. I want to continue taking it and see if it helps. I have not been on it any where near long enough to see any results. | F | 35 | 4 days | 7/14/2009 | 2 | IC | bruising, gas, bloating, hair loss, blurry vision | had no noticeable positive outcome | M | 53 | 2.5 years | 7/14/2009 | 5 | IC | none | I do not take the medication orally. It is given by catheterer directly into bladder to lessen side effects. Started once weekly for 6 months, then once a month for 6 months. Has helped tremendously. | F | 49 | 1 years | 6/23/2009 | 4 | I have interstitial cystitis | Slight hair loss, nothing to write home about. Weight gain. My skin is "clammy" most of the time, and my skin feels "bumpy", like I have acne. | I've been on Elmiron since February, 2009. It has helped me tremendously! I barely have the burning, pressure, or frequent urination, like I used to. I will slowly reintroduce some food/drink items. I'm taking 2 100mg pills, twice a day. | F | 47 | 4 months | 6/15/2009 |