Topic profile page for Elmiron.
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Topic "Elmiron" was discussed 2,377 times on 38 sites in last 3 months
Hi guys I am feeling so down about hair loss from elmiron. I've been on it for over 6 months and the hair loss seems pretty continuous. I just touch my hair and strands come away, without running my fingers through it or anything. I feel like I am being so shallow by letting this get to me so much. But I really like my hair - it is naturally thick, dark, wavy and long. I would always ...
Started 1 week, 1 day ago (2009-11-23 06:56:00)
by Asha2287
So I had surgery for endometriosis to diagnose my chronic pelvic pain and during that surgery she also did a cystoscopy. Well she found that my bladder was very inflamed and irritated and diagnosed me with IC. She prescribed me Elmiron, but I can't afford it so I applied for patient assistance. Well I don't have rx coverage ony my insurance so the patient assistance company (Johnson & Johnson) ...
Started 1 week, 2 days ago (2009-11-22 14:06:00)
by Tara_09
I am having surgery on Tuesday so I had to stop taking Elmiron last week. Everything had been great but a couple of days after I stopped taking it I noticed a few symptoms I didnt have before. Now I bruise really bad and have no idea why. I also had to get a little bit of blood work done and the nurse just pricked my finger. It bled really bad and even after I thought it had stopped it would ...
Started 1 week, 4 days ago (2009-11-20 15:42:00)
by kem
I need some outside advice on this matter, as I'm pretty much at wits end right now. I've been on Elmiron since September 2008. Around the time of December '08/Jan. '09 I noticed I was losing a lot more hair than normal. Knowing this was a possible (but unlikely) side-effect, I tried not to worry too much about it, because the Elmiron was working and I felt a lot better than before I was ...
Started 1 week, 4 days ago (2009-11-20 03:22:00)
by SueP1
I was wondering if there are longtime Elmiron users who feel it stops working after a few years. I've been on it since 2000, flares could be related back to food & I was fortunate to have a good remission in the last few years. Lately, in spite of sticking strictly to the diet, I am in a flare that just seems to go on and on. The only change was last spring trying 2 blood pressure meds that ...
Started 2 weeks, 1 day ago (2009-11-16 09:36:00)
by musiclover
Has anyone taken their Elmiron with herbal, decaf tea, like peppermint tea? I called Elmiron and they said they only know that their studies were done with water. I know you have to take it on an empty stomach, but I don't know if tea with just a pinch of sugar would be bad. I'm getting sick of plain old water all the time and I have to take so many meds with water it's getting boring.
Started 2 weeks, 2 days ago (2009-11-15 08:32:00)
by njmacsmith
Hi all. When my family doctor first thought I had IC, he immediately put me on Elmiron. I did not, however, do any diet modification. My results were promising at first, but then after I had tried it for four months, I wasn't sure if I was getting any results and with a cysto coming up, he discontinued it for me. I am having a very bad day, maybe it's a real UTI, I am having a lot of spasming (if...
Started 2 weeks, 6 days ago (2009-11-11 15:49:00)
by musiclover
Sorry, but I just need to vent my frustration with Elmiron. 5 1/2 months in and it hasn't done a thing for me. I started Cystoprotek and DH aloe a few weeks ago after being totally frustrated with Elmiron. I feel slightly better most of the time since starting those supplements, but still have the feeling that I need to go. And still, how well I feel seems to be directly related to taking the CP ...
Started 2 weeks, 6 days ago (2009-11-11 15:45:00)
by musiclover
Sorry, but I just need to vent my frustration with Elmiron. 5 1/2 months in and it hasn't done a thing for me. I started Cystoprotek and DH aloe a few weeks ago after being totally frustrated with Elmiron. I feel slightly better most of the time since starting those supplements, but still have the feeling that I need to go. And still, how well I feel seems to be directly related taking the CP and...
Started 2 weeks, 6 days ago (2009-11-11 07:56:00)
by duana
i'm on my second try of elmiron.the first time i took 1 pill per day for 5 days.an anxiety attack hit me harder than ever.i had heart palpitations and felt shakey.just a real nervous wreck.i felt dizzy after the first pill.i stopped the medication on my own.i decided to wait and am trying it again.i started feeling almost the same way again but not dizzy just really anxious.i posted this before ...
Started 1 week, 1 day ago (2009-11-23 11:38:00)
by lttlewun
I have been on Elmiron for about 2 months. About a month ago I saw some blood in my stool. I called my Uro and he said he highly doubted that the Elmiron was causing this, but if it continued, to make an appt with my GP. All seemed well w/my bowel movements after that day. Besides the fact that my stools were a little looser, I didn't see anymore blood in my stool like I did that day. Once in ...
Started 1 week ago (2009-11-24 12:19:00)
by Glenda2
I made an appt. with My Primary Care doctor and I saw Her today. We talked about my IC , and How Elmiron makes me sick , and that I had to stop taking it. I asked what other medications are available ? She told me there isn't anything else for it. She told me she has several IC patients and they are always in her office with their Hands stuck out looking for Pills of any kind....
Started 4 days, 19 hours ago (2009-11-27 03:50:00)
by Melissa66
I wanted to talk about the treatments I've used - successful and unsuccessful. To confirm my urologist's diagnosis of IC, I had a cystoscopy and bladder distention. The tests came up positive. He immediately put me on Elmiron which reduced my pain, pressure and frequency by about 75%. I was reduced to urinating 8 times a day instead of 20. The Elmiron was my wonder drug for 5 years. I...
Started 6 days, 5 hours ago (2009-11-25 17:05:00)
by lonen86
I just had my first Uracyst treatment last Friday. I'm in a really bad flare up and in so much pain. I haven't been in this kind of pain since I was diagnosed three years ago. I was doing very good only taking Elmiron ,atarax,25mg of elavil and no pain meds but my Dr wanted to start the Uracyst to help my bladder heal I just want to know if this happens with the first treatment and if it goes ...
Started 2 days, 16 hours ago (2009-11-29 06:57:00)
by Mike Cook
I'm a 59 year old male with IC, I have been on Elmiron for 11 years, I'm having trouble with chronic fatigue from low platelet count and my uro says I have Thrombtrypenia that could be caused from Elmiron but since I have been on it so long he doubts the Elmiron is the problem, I have to see an Oncologist to see exactly what is going on. Has anyone else ever suffered this problem with Elmiron?,...
Started 2 days, 5 hours ago (2009-11-29 17:48:00)
by rjyoon
I got idiopathic thrombocytopenia purpura in '96, and started Elmiron in '98 (my ITP was in remission by then). My hemotologist monitored my platelets carefully, and the Elmiron did not affect my counts. I have been on Elmiron continuously ever since.
Started 4 days, 5 hours ago (2009-11-27 17:54:00)
by LithEruiel
Natalie, I think you have some really good questions/concerns - you should seriously call the manufacturer of Elmiron or write them a letter. Here's their contact info: http://www.orthoelmiron.com/contact-elmiron.html I'm sure you'll look great for your wedding. If you're worried about it maybe get some extensions...I think if their done professionally you can't even tell, or do an updo ...
Started 1 week, 1 day ago (2009-11-23 09:47:00)
by mary124
thats what I would do as well. In fact, had to do something similar with another doctor office for a "standing order" for lab work. It took be too many weeks to get it fax to the lab (and the doctors office is in the same building) apparently it was easier for them to write a prescription out for lab work; maybe for them but not for me! anyway, I went to the lab and asked for the form and I ...
Started 1 week, 1 day ago (2009-11-23 11:40:00)
by KrisH
I have been on and off Elmiron since 1998, I take it only when I am in a bad flare and even then it takes at least 2 weeks to start working. I dont like to take it continuously because of the side effects, hair loss, fatique(for me) and I already have CFS, and worry about liver damage, so I do have my liver tested every 9mos. or so. But I have found it is the only drug that actually helps me ...
Started 3 days, 7 hours ago (2009-11-28 15:41:00)
by purpleviolet
I won't take it but if you don't mind trading in your pain for hair loss and thin blood, then by all means do if you need to save your sanity. I am mad because the manufacture does not seem to acknowledge the pervasive nature of this side effect and most of all WHY? If we knew the reason why the side effect occurs, then maybe it could be countered. For instance is it because the follicles are ...
