ELMIRON Reviews (PENTOSAN POLYSULFATE SODIUM)

Average Rating: 3.3 (238 Ratings)

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 INTERSTITIAL CYSTITIS

 Type: Rx Drug

  

ELMIRON  (PENTOSAN POLYSULFATE SODIUM):  This medication is used to treat pain/discomfort from a certain bladder disorder (interstitial cystitis). It may work by forming a layer on the bladder wall and protecting it from harmful/irritating substances in the urine. It is also a weak "blood thinner" and therefore may increase the risk of bruising/bleeding (e.g., bleeding from the nose/gums).   FDA Approval Date: 1996-09-26 (Sources: U.S. Centers for Medicare Services, FDA)

  

Results are sorted by Date added.

Key to Ratings: 1=LOW (I would not recommend taking this medicine.)
5=HIGH (this medicine cured me or helped me a great deal.)

Page: 1 2 3 4 5 6 7 8 9 10 11 12


RATING  REASONSIDE EFFECTS FOR ELMIRONCOMMENTSSEXAGEDURATION/
DOSAGE
DATE ADDED
 
 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
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 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
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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
Email
 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
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 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
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 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
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 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
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 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
 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

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