User Reviews for Elmiron (pentosan polysulfate sodium)

I had too many side effects.I stopped Elmiron and tried homeopathy and it's work.No more pain now.I' m so happy.

I had bladder pain for years and so many bladder infections but then the test results started coming back negative and my Dr sent me to a specialist who found that I had interstitial cystitis and put me on this drug. I have to tell you that I had severe side effects, hair loss, constant abdominal pain and # 2 issues, mood swings and impulse control issues. I had to stop taking it after about 7 months. I have been off of it for a year and still have severe side effects but the positive is that I no longer have bladder pain. Hopefully the side effects will go away eventually.Read More Read Less

I have IC, for over 25 years. After finally getting diagnosed by having a cystoscopy, I had DMSO treatments(burned terribly and did not help), then had heparin treatments(which felt good only while having txs), then started Elmiron 3X/day and 2 hydroxyPAM(has to be the PAM ) at bedtime. After 2 weeks, it was like I did not even have the disease, pain, pressure, and urgency were gone. I cannot function without it. Because of the cost($900 a month-insurance pays half), I now take 2x/day and one hydroxyPAM at bedtime. I worked in surgery so it was a lifesaver for me and gave me back my life. Read More Read Less

I have use this drug for 15 years. I still will have flares and get further treatment. I follow the diet. I am worried now, I have developed MACULAR DEGENERATION. I feel this is from the ELMIRON! What to do now?

I was diagnosed with IC 3 weeks ago and Elmiron has giving my life back. Its very expensive, but my insurance covers it. Thank god. I recommend Elmiron. I haven't had any crazy side effects as of now. Thanks Elmiron.

IâÂ?Â?m being treated for IC with Elmiron. Also noteworthy, I have gastroparesis, GERD, IBS, endometriosis, adenomyosis, Asthma, and Allergic Rhinitis. My specialists are working together thankfully and have explained how these symptoms overlap. ItâÂ?Â?s a radiating pain and cyclical. IâÂ?Â?m taking Elmiron along with a low dose Antidepressant, omeprazole, doing 3x a week yoga and pelvic floor therapy. IâÂ?Â?m also on a purÃ?©ed food diet now. The pain is almost non existent now! 6 months ago I felt hopeless as IâÂ?Â?ve been in some degree of pain for 15 years and it was at its worst. IâÂ?Â?m thankful to finally have some relief and answers after so many years of âÂ?Â?symptom managementâÂ? but not knowing exactly what the symptoms were from! The only side effects Iâ??ve experienced are light hair thinning and raw elbows. Read More Read Less

Just got this RX. Afraid to take with my Eliqis? Anyone else take this while on blood thinners?

I have not had any relief and I’m losing my hair. I’m trying to stick it out since it’s only been a month but I wish the FDA would invest more time and money into the study of Interstitial Cystitis. There are too many people suffering for something that is incurable. I cannot Work, I can barely ride in a car. It’s affecting my life and I feel like nothing is being done to help.

Hello! So I’m on here because I’ve been diagnosed with IC for over 10 years. I’m 27 and I was on Elmiron for about 7 of those years. I recently stopped taking it because of the crazy price jump..I have great insurance and it still went up $100 a month. So I’m here to write that if anyone on here is taking it for IC and can’t afford it look into ‘Desert Harvest Freeze Died Aloe Pills’.My doctor told me about them awhile back as a way for people who don’t have insurance to be medicated. It’s not the cheapest but I will say I can actually tell these pills work, where with Elmiron I never could. I never felt as good as I do with the Desert Harvest pills and they are cheaper! Elmiron has always had a low percent of working for others anyway so please, if you can’t afford it, try the freeze dried aloe pills. I take 3 a day with marshmallow root pills(amazon)and my flares have never been better. Hope people who can’t afford Elmiron see this and try it. Good luck!??Read More Read Less

I was prescribed to take 4 tablet a day, its so expensive I can get along w/one a day, BUT my so called doc will only write a script for 3 a day, said that is what is recommended. I need a script for 360 and that will last me almost a year, but no he refuses. These people who RECOMMED ON:|LY 3 a day has NEVER had the pain I have had. Sick of whimp doctors, and he is urologist to boot. Shame on the medical community. But I will get a doc that will give me a script for 360 and they will last me and cheaper for me. Mad in New JerseyRead More Read Less

I've just started the elm iron one week ago for the IC put it's rely more than painful until this moment and Iam taking the medication three times a day its not covered

had this problem for 6 year ,, Gave no relief of bladder symptoms and caused severe stomach upset, smelly urine, still on it,

I was diagnosed with IC 13 years ago. My obgyn put me on Ditropan for overactive bladder, but it did not stop the pain. After seeing a urogolist, I was diagnosed and he added elmiron to the Ditropan and it stopped the pain. I am still on Ditropan once a day and elmiron twice a day, and I am so greatful that I hardly every have any problem. And that's only when I eat or drink too much of the foods that irritate the IC condition. I have cut way back on citric drinks, artificial preservatives, msg, smoked meats, caffeine, soda, etc. Ask your doctor for a list of foods that negatively affect the condition, or check it on the web. I do thank God for insurance, because elmiron is very expensive. Read More Read Less

I've only been on this for 1 week. 1st 2 nights had severe foot cramps, now having tendonitis symptoms in legs and butt. Had to take chlonapin to sleep last night. Skipped my dose but still have the tendonitis this am. Too scared to stop Elmiron so just took 1 this am instead of the 2 prescribed. I've heard levaquin induced tendonitis can cause permanent disability and this feels just like that. Interested in knowing if anyone else has had this side effect.

About a year after radiation for prostrate cancer I began experiencing blood in my urine. My urologist put me on Elmiron and a year later I have not had a bleeding episode. It has worked extremely well for me. I do experience some occasional diarrhea but its nothing compared to passing blood.

I was diagnosed with IC in the fall of 2012 and have taken Elmiron since. Believe I haven't experienced any of the side effects though after reading more about it, guess I need my liver function checked. I manage my IC with Elmiron and Flomax. (I was already on Flomax

I have had pain in bladder for years. I went to one OBYGEN who did a bladder tack thinking this was my problem...but I continued to have pain I have had test for bladder cancer. That was negative. All of the doctors I went to said I had protein in my urine and treated it with antibiotics...finally I found a doctor who knew what test to do and this medicine is wonderful. I only take two pills a day, (he prescribed three) but my insurance will not cover it since they see it as a pre-existing condition. But with just the two pills a day I am still feeling 100% better. The only side effect I have noticed is the easy bruising.Read More Read Less

I have been on a combo of Elmiron and Vistaril for a little over two years now. I was told my pain was due to endometriosis and polycyctis ovaries until I ended up in the hospital for another cyst. OBGYN did some tests and I started the treatment. At first I had good relief and no painful frequency. Recently though it doesnt seem to be working as well.not sure what to do next but looking for options. IC is no fun and aim tired of it.

I have IC with horrible pelvic pain. This medication has helped reduce the pain greatly but makes me very nauseous and gives me a constant headache.

Took Elmiron for about 3-4 months and noticed a marked improvement of my IC symptoms - which was mainly a sense of urgency with no pain. I had been following the diet until I started taking the pills, which helped a LOT. I would find myself symptom free save for an occasional mild monthly flare up using diet alone. Once on the pills I was totally symptom free and could eat and drink whatever I wanted. I did stop taking my pills regularly and started hoarding them because of the cost - which I regret because I can feel my bladder starting to feel irritated again. SO back on the pills. No side effects, except a headache for a few days when I first started them. I won't give it a perfect score because it is almost 800$ in Canada with no drug plan for 3 months. And because it does take some time to work. In the IC community there seems to be a lot of misnomers and "horror" stories around this drug but imo that's rather overblown. There's horrible side effects to lots of drugs! Google "toxic epidermal necrolysis" which can be caused by aspirin, ibuprofen etc. -- they all have warnings and rare side effects. But for a lot of people this drug can let them live a normal life. Too bad it's so expensive, but I'll pay it to live a normal life.Read More Read Less