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 | Hair Thinning | I have been taking this for 5 years. As I am on another blood discorder medication unsure if this is the reason for my hair thining. As most medications can cause this as well. I have been looking to see if you can ever stop taking it as I have been perfect for a long time now and afraid to stop for fear of the IC returning. The only bummer is there is no generic for this medication. It gets expensive with some insurances. This medication was a godsend after months and months of terrible pain with no hope in sight. | F | 38 | 5 years 100 4X day | 1/13/2012 | 3 | IC | Bad stomach pain, blurry vision, eye pain, headache, constipation & loose stool. Constantly feels like I need to go #2. | In 3 weeks I already have a reduction in bladder pain & burning. I was diagnosed with IC 20 years ago & since then multiple other chronic illnesses as well. Somehow, I was in remission for about 3 years with out any IC meds & now the IC came back, horrible pain & burning, I'm worried the side effects will increase & new side effects will come. Had a rescue bladder instillation & the pain & burning worsened. My heart really goes out to us all that live with IC | F | 49 | 3 weeks 100 MG 2X day | 1/5/2012 | 2 | IC | Almost total relief of IC symptoms; minimized flares and ability to eat "problem" foods with minimal to zero flares/pain. Flared occasionally around menstration times. Minimized nocturia....HOWEVER - Extreme and expedient HAIR LOSS. As a 27/28 year old female, this was devastating. In the 8 month spam I took Elmiron, I lost 30% of my hair, and the breakage and damage to the strands remaning was horrific. I stopped the pill immediatley. | Within 1 month of quitting Elmiron, my flare and IC symptoms returned with a vengance....which is regrettable. 2 months later, my hair has begun to regrow, however the damage in the remaining strands is deep. Dyes applied to hair are also not true to color. Something in the Elmiron, within the strands of my hair, alter any dye. I have tried several top brands out there, and stylists are baffled at how the "new growth" reacts differently than the length of my hair.... which retains Elmiron in it. It is the only medicine added and removed from my regimen that can be held responsible for all this havoc! | F | 29 | 8 months 400 2X day | 1/3/2012 | 5 | Interstitial Cystitis | Not alot of side affects.......I have depression and am slightly over weight......and get tired alot. | F | 59 | 8 years 100 mg. 3X day | 8/4/2011 | 1 | Interstitial Cystitis | Terrible Hair Loss; GERD (Acid Reflux); Dizziness (Spained my ankle from fall due to being dizzy); RInging in ears; Depression, Heart problems (fast heart rate); Anxiety. | It has been almost a year since I've been on Elmiron and I am still losing my hair. It is to thin now and may have to wear a wig if this keeps up. Company is non-supportive and terrible. I've had so many problems on this pill. I could hardly stand up at times because it made me so dizzy. I fell quite a bit because of it. The ringing in my ears drove me crazy. I had a lot of anxiety and had to go on Valium. I got GERD so bad, I almost had to go to emergency. My doctor prescribe Prilosec for that problem. My hair was falling out in clumps and it's still falling out today. Once I got off this horrible pill, everything cleared up and I was back to normal, except for the hair. This company should be sued for using this pill for something it wasn't intended for and for not posting better side effects. My doctor never mentioned any of these side effects and said his patients didn't have a problem with it. Well, I guess he was wrong as you can see how many do have a problem with this drug. I think there should be a class action lawsuit against the firm who puts out this drug. I've tried many times writing them and they keep avoiding me. They just don't care. Maybe they would care if they got sued. Because all they think about is making a dollar. | F | 59 | 90 days ? 3X day | 7/8/2011 | 4 | IC | No side effects to date. | I have suffered since the age of 23 with severe IC, and I'm now 47. It took me that long to find a doctor who believed in me and my symptoms. I've been on Elmiron since April of this year and although the pain has not completely been alleviated, I do see light at the end of the tunnel. If it never gets better than what it is now, I can live with it. Losing my hair would be a small price for me to pay at this point. | F | 47 | 2 months 30 mg 3X day | 6/27/2011 | 2 | IC | System not digesting food well, loose stools 4-6 times a day. Unless I could have immediate access to a bathroom I did not leave my home. Some small improvement in IC symptoms, but for me the side effects were just as disabling. | I am going to try it as a bladder instillation. | F | 50 | 18 months 200 2X day | 6/19/2011 | 5 | IC | occasional stomach upset, headache, sleeplessness | I have suffered from IC since I was 7 years old. When I was 32 I could not figure out why I allways had what I thought was a uninary infection, the doctors couldnt figure it out either. I was in horrible pain and chuncks of blood were in my urine. Finaly I was sent to a urologist who scoped my bladder and determined it was IC. I started takeing Elmiron along with Hydroxyzine for my symptoms. After about three months I had a new life. Hardly any symptoms at all. I had to battle the side effects but it is soo worth it. They have gotten better thru the years. I can not eat or drink citric acid without it causing burning with urination and sex causes me to have a flare up. If I have to go without the Elmiron which I have allways taken with the Hydroxyzine I start to have the frequency, urgency and pain in the pelvic. I can not immagine my life without Elmiron. Hang in there and give it time. I have not had any major hair loss to date. God Bless You and keep you healthy. | F | 40 | 8 years 100mg 3X day | 6/14/2011 | 4 | IC | Initially had stomach ache but that is gone now. No major side effects to date, some slight bloating. | I am cautiously optimistic about this treatment. I have seen about a 20% improvement in urinary frequency (that is the only IC symptom I experienced). Dr. has instructed me to stay on Elmiron for 3 more months at 300mg a day before weaning off. I also almost completely eliminated caffeine from my diet and replaced 3 Mountain Dews a day with Water. I believe that has also contributed to my improvement. | F | 36 | 4 weeks 100 3X day | 6/2/2011 | 5 | IC | a little tired | I'm allergic to SO many drugs that I was scared to death to try this one but like a friend said, "pain is a big motivator" so I tried it. Started with 3 a day & now I'm on 2 a day. If I stick to the strict diet I can do 1 a day but I am also taking Desert Harvest freeze-dried aloe vera capsules. (I open them & mix with 1/3 cup of water) If I get off the diet OUCH & I go back to taking 2 plus 2 aloe veras. No side effects except maybe tiredness. The hardest part is remembering not to eat 2 hrs. before a dose. So nice not to be in so much pain. Such a wierd condition that came out of left field. Good luck friends, don't give up looking for a cure! | F | 61 | 6 months 100mg 2X day | 4/9/2011 | 4 | Interstitial cystitis | I have been taking Elmiron for 18 months. It has greatly reduced my IC symptoms but now all my hair is falling out. I have lost at least 30% of it so far. I am going to try an herbal remedy and bladder instillations. I can not lose my hair. | F | 32 | 18 months 100 mg 3X day | 3/31/2011 | 1 | Due Interstitial Cystitis | Stiffness and pain in joints. Thumbs, knees and ankles. | It did not provide any improvement in symptoms even with hydroxzine. | M | 58 | 4 months 100 mg 3X day | 3/30/2011 | 5 | IC | F | 55 | 100 mg 1X day | 3/13/2011 Patient History | 5 | IC | None to date | After reading through the comments, I realize how very lucky I am. I have not had any of the side effects (hair loss, stomach issues, etc) that many others have had. I have always worried about the side effects with long term use so it certainly helps to read about women who have been on Elmiron for 10+ yrs with no side effects. For all those who are living with IC and cannot take Elmiron, I am so very sorry for you but I hope you find other ways of coping! | F | 25 | 2 years 100 MG 2X day | 2/18/2011 | 1 | IC | Blood in stools, hair loss, stomach problems.Worst bladder pain ever. | I had to go to a Gasternologist and have a colonoscopy and a Endoscopy because of the blood in my stools. This drug was poison to my body. It never helped me and made me worst. My hair is still falling out after almost 3 months of stopping it. It was a nightmare. Be aware of your body telling you something. Because of this drug it caused me procedures to be done and drained my bank account. What a nightmare. | F | 51 | 6 months 100 3X day | 2/2/2011 | 5 | Interstitial Cystitis | I have had no side effects at all. | My symptoms are under control now. I follow the IC diet, also, and take Utira-C only when I eat something or do something that causes a flare. | F | 48 | 1 years 100mg 3X day | 2/1/2011 | 4 | Bladder pain | Thinning Hair and Reflux/stomach problems | If anyone has been on this and has lost hair....does it come back in after you stop using it | M | 52 | 3 months 100 mg 3X day | 2/1/2011 | 4 | interstitial cystitis | I haven,t had any side effects | Elmiron has helped me a great deal. I am not in pain all the time like I used to be. | F | 45 | 4 months 200 mg 2X day | 1/19/2011 | 5 | interstitial cystitis | None | It's amazing! I've had no side effects and I can consume anything without any bladder discomfort whatsoever. I do worry about some of the long term side effects though. | F | 48 | 4 years 2X day | 1/17/2011 | 5 | Interstitial Cystitis | I've taken Elmiron and CystiProtek (2 caps 2x daily) for 6 years now with only side efects being a little bit thinner hair (but not very noticiable). But the last few months I've begun noticing much more hair loss constantly. Its getting really thin--- like I'm balding-- but I'm only 50. My friend is 38 and she also takes Elmiron and has begun noticing the same thing. Her hair now falling out more than it used to (she taken Elmiron 4 yrs now). Have they changed something about the formula maybe?? | F | 50 | 6 years 100 mg 3X day | 1/1/2011 |