ELMIRON Reviews (PENTOSAN POLYSULFATE SODIUM)Average Rating: 3.3 (238 Ratings)Filter ResultsCompare ELMIRON with similar:
Type: Rx Drug
|
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 |
| 2 | IC | I have been taking it for years. However I was severely Anemic having Stomach issues and stopped taking it.When I started back up all these symptoms reappeared that I thought had gone away due to Iron Infusion: Swelling legs, tiredness, weak, stomach pain, blurred vision, twitching eyes, film over my eyes hard to focus. I stopped taking it again and those symptoms have resolved. I will do instillations no more of this for me. | However it did improve my bladder capacity and healed the lining of the bladder..but the other stuff makes quality of life as bad as IC | F | 55 | 7 years 300mg | 3/18/2022 | 1 | IC | Has ruined my eyes in 17 days. Absolutely no eye problems before. After- both tear miniscus destroyed so constant eye pain and no lubricant in my eyes -must use drops every half hour for the rest of my life. Eyelid droop. Am in pain constantly. Also destroyed entirely and permanently the mucus lining in my nose and left me with dryness in my head causing severe headaches. All this for the rest of my life after just 17 days of taking this evil drug. | Dr could not care less and could not prove negligence. Still got painful IC but will never take another drug for it. | F | 63 | 17 days 30 1X day | 11/14/2020 | 5 | Ic | Do feel bit dizzy sometimes, not bad. And do have GERD. But again. Not bad either. | F | 49 | 2 years 100mg 1X day | 10/3/2020 | 3 | IC, urgency, pain | None, at first, but after about 3 months my hair started falling out and a couple of months after that my eyes started to ache and become blurry. Stopped immediately. Now I take aloe pills everyday and cbd oil and it seems to be working. The memory of the IC pain keeps me honest about keeping on that regimen and I eat and drink according to the iC diet. If I dont, I pay. Immediately. | I had relief within the first couple of weeks of taking Elmiron, but I drastically changed my diet, too. Drank no alcohol, soda, coffee, tea; pretty much only water, dandelion root tea, and coconut water. Cleaned up what I ate (if i couldn't pronounce an ingredient, I didn't eat it); nothing with citric acid, vinegar, tomatoes, citrus fruits, nothing spicy. I cried when I went to the grocery store or out to eat. But it's been about a year after stopping Elmiron and I feel okay. My diet is extremely boring, but it's better than the excruciating pain. I'm figuring out fun things to eat. I'm getting used to it and ONCE in awhile I can cheat, but not too often or I dearly pay. Invest in some prelief tablets, they do help when you want a little "cheat," especially when you're at a party or something, but I try not to do that too much as I'm sure overendulging in too much alkalinity isn't great for you, either. | F | 49 | 6 months 3x daily | 5/7/2020 | 5 | Interstitial Cystitis | Bloating, headaches, | I'm now having vision issues and have stopped taking Elmiron and I'm scared the IC will flare up again. Elmiron really worked for me but I have to get my vision back. | F | 66 | 5 years 100mg 2X day | 3/26/2020 | 1 | Interstitial Cystitis | Fatigue, hair loss, weight loss, vision problems | It didn’t start to somewhat help until 7 months of taking it. Hair loss started around 3 months of taking it. Currently stopped taking it | F | 28 | 8 months 300 mg | 2/16/2020 | 2 | Ic | Started taking elmiron about 7 weeks ago. So far I have started having joint pain, severe dry eye, sensitivity to light to the point I can not go outside. Fatigue. It does seem to help my bladder but I will have to stop because of all the side effects. Back to square one with the pain pressure and peeing multiple times a day. And can not go on long trips in car or plane. And sometimes even short trips ! Wish for a cure for this miserables disease. | Too many side effects | F | 57 | 38 days 300 | 1/30/2020 | 5 | Diagnosed with IC | Hair loss and some back pain and vision concerns. Recently (2 weeks) changed to 200MG/Day to see if it will mitigate the back pain. | IC was making my life miserable. I had tried multiple herbals with no significant results. Elmiron, although expensive, worked for me. | M | 59 | 2 years 100MG 2X day | 10/15/2019 | 5 | Interstitial Cystitis | None | This medication has worked wonders for me. The IC which I didn't even know I had for 2 years was interfering with work, sex life etc. The positive effects continue to increase and I can't say how happy I am. I'm 99% better and on my way to full remission. Give it a chance, I couldn't imagine not being on it. No more 15 bathroom trips for 3 minutes for just a dribble. I can actually hold it in and not feel like there's steel wool in bladder. I was scared when I read the horrible reviews on here but this med has worked wonders for me. Remember that people are more likely to post horror stories than saying it works great and that it feels like there's nothing wrong with me anymore. | M | 40 | 1 months 100mg 3x | 6/29/2019 | 5 | IC | I was diagnosed with IC 2/14. Started Elmiron 100mg 3x per day and 5 weeks later I went into remission until 2/19. Again started Elmiron 100mg 4x times a day with Hydroxyzine 10mg to 25mg and Uribel as needed. Today is week 7 and my bladder is painless and 100% urgency free. I also go to yoga, meditate at night and no alcohol and eat super healthy. I stopped drinking alcohol 8 years ago. I stopped coffee and all acid foods after my flare on 2/19. My life is amazing again and Elmiron is a Godsend. | It's takes time, but when it begins to coat your bladder, you feel relief. There's hope for those suffering. | F | 45 | 53 days 100mg | 3/20/2019 | 5 | INTERSTITIAL CYSTITIS | NONE | This medication has been a God send for me! The interstitial cystitis disease process was so painful for me, I could not function. I have never had a side effect from this medication. The regular dose was 1, 300 mg capsule, 3 times a day, but 1 capsule, 2 times a day has worked very well, so that is what the urologist and I have gone with. I can't thank the manufacturer enough for creating a medication to help with very painful disease. | F | 56 | 15 years 300 MG 2X day | 10/10/2018 | 3 | Interstitial Cystitis | *May be connected to major vision issues and partial vision loss | I highly recommend that you get your eyes checked annually while on this medication. It is possible that long term exposure to this medication MAY cause damage to your Retina. If this is a concern please feel free to contact me with any questions you may have. | F | 38 | 15 years 400 mg day | 9/4/2018 | 5 | Interstitial cistitis | Floaters in eyes | I need cateract surgery. Should i stop taking it and for how long before surgery. I have taken elmiron off and on for 10yrs for flares.usually for 3mths. | F | 70 | 6 months 100mg | 6/20/2018 | 5 | Ic | Brilliant drug for the pain of IC I manage with 2 tablets a day instead of 3 side effects blocked nose but bearable. | Would like to stop to see if symptoms return but really can't put myself through the stress. | F | 56 | 20 years 2 od | 6/19/2018 | 3 | Interstitial cystitis | BLIND SPOTS in vision, blurry vision, thinning of my cornea, a delay in my brains ability to process what I am seeing, becoming color blind, words moving around on the page that I'm trying to read. ( another patient called it "swimming" and I think it was the best way to describe how the words move.) Build up of "trash" in my eyes causing rings that can be seen around my pupils. Diagnosed with macular dystrophy and after years of studies, multiple retina specialist have come to the conclusion that Elmiron is most likely the cause. | Please be extremely cautious while on this medication. While it may have helped my IC, I am now in a situation where I can't do accounting work (read or create spreadsheets), read using a computer, or see things in simular dark colors. There is a group of us that presented the same, or similar, issues to the same Retinal Specialist. After years of testing us to try and rule out a number of genetic causes, they, and many of their colleagues, have looked into our full medical histories and agreed that Elmiron is most likely the culprit. | F | 37 | 12 years | 4/20/2018 | 5 | I C bladder disease | Definite hair loss especially when I’m taking ibuprofen or an anti-inflammatory. Blurred vision , very tired Most of the time, weak and body aches a lot. | I stopped taking it for about four months and had a very bad setback so I got to take it side effects I will live with the pain of I C is worse . | F | 50 | 1 years 200mg | 4/16/2018 | 5 | IC | Hair loss. Unsure if related because I have been on it so long and never associated before: IBS, severe gas, itching/dry skin, dry/itchy eyes, blurred vision, joint pain, fatigue, headaches. | I have been on Elmiron well over 15 years. I suffered from undiagnosed IC for 7 years to the point of ER visits and countless doctor visits. After a couple of months on Elmiron, I thought I had found a miracle drug. I was not in pain for the first time in over 7 years. However, it does come with a price; both in dollars and side effects. My husband says he does not know how I still have any hair on my head as much hair falls out every time I brush my hair. Now, I wonder if all these other problems I have that countless tests and doctors can not find a reason for are from the Elmiron. | F | 51 | 15 years 100mg bid | 1/3/2018 | 3 | Intercistial Cystitis | Extremely dry skin which created contact dermatitis rash to products I have used for years, hair loss, blurred vision, ringing in ears, bloody nose. | I have taken Elmiron for 11 months. Three months into taking it I ended up with vaginitis and my skin began to get very dry. I used to tan in a tanning bed two times a week for 10 minutes at a time which was not an issue for me until I begin taking Elmiron. My skin would start to burn and itch after about 3 minutes in the tanning bed. At this time my provider did not feel it was the medication causing either of these issues. She asked that I stopped using toilet wipes as often as I did and purchase a feminine ph balanced vaginal wash, which helped that issue.I completely stopped tanning. 11 months later my skin is still extremely dry, tight and very irritated. I notice that heat will bring on a contact dermatitis like rash, which is worse on my neck chest and thighs. I have not purchased any new products. My skin has started to break out with all the products I have used for many years. This even includes Curel lotion.....it's fragrance free! But I guess the fact that it has alcohol is the problem because my skin is sooooo dry. I have began purchasing expensive soaps and lotions such as Vanicream for sensitive/eczema skin and still I have not seen any improvement. I am extremely uncomfortable at this point, even getting up at night due to the dry skin. I itch all the time and have to moisturize about 3 times a day. Unfortunately I have decided I can no longer take this medication when I had episodes of blurred vision and ringing in the ears. That has happened on two separate occasions. | F | 33 | 11 months 200mg/day | 7/30/2017 | 3 | Ic | There was a monster in my tummy I threw up all night. Doctor says it causes bad liver damage | I am glad at least there is one medication on the market to try to help us with IC seeing as though there is nothing else and no cures we have to suffer. Try kratom it has saved my life. This herb can be addicting so beware if you're prone to addiction. To be honest I have no idea what it's doing to my body but I know it takes all the pain away... | F | 27 | 3 days | 6/22/2017 | 4 | IC | Loose stools and acid reflux - although the GERD might not be related? | Took almost a year to become effective - went from rest room visits every half hour to almost 2 hours between. Also take hydroxyzine which seems to work well with the Elmiron... | M | 75 | 10 years 200 2X day | 6/13/2017 |
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)