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View Full Version : Question...How long do IC patients take Elmiron?



tillysav
12-17-2003, 02:10 AM
I'm taking Elmiron and am very hopeful it will recoat my bladder lining. However, it is causing my hair to fall out. How long will this last and will I eventually be able to stop taking Elmiron?

ICNDonna
12-17-2003, 03:11 PM
Sometimes the hair loss is a temporary thing and stops even though you stay on elmiron.

Most people continue taking it if it helps --- some are able to reduce dosage, but very few are able to totally stop taking it.

Donna

erinaj1997
12-17-2003, 10:09 PM
I noticed hair loss when I first started. This is only the second month I'm taking it and I've noticed the hair loss has gotten less. I don't know how long I'll be on it. It seems to work so as long as it works, I'm staying on it.
Don't worry too much. They say as soon as you go off it, the hair grows back. Is it coming out in clumps? or do you just notice more in your brush?

Erin

tillysav
12-17-2003, 11:29 PM
Thanks for the encouragment:) I'm newly dx and have been on Elmiron for 2 weeks. I was told it would take a while to notice improvement with IC symtems. My hair is falling out fast and I'm hoping that as my body adjusts to Elmiron my hair loss will slow down or stop. Meanwhile, healing my body is a priority. I'm embarrased about the hair loss -- but this is no time to be vain.

Question -- does anyone else get exhausted physically? Could being in severe pain at night cause it? My doctor's nurse says this is not a symtem, but I have it a lot. Thanks for listening.

buana1
12-18-2003, 12:40 AM
Everyone naturally loses some hair. My doctor told me when I started on Elmiron to look at my brush every day for a while to see how much hair I normally lose. Use that as a guide. Hair loss from Elmiron would not occur for 3 - 6 months. And at that time if I noticed an INCREASE in the hair in my brush and/or noticed a thinning spot we would know it was from the Elmiron.

ICNDonna
12-18-2003, 12:46 AM
If pain is keeping you awake at nights, it's not surprising that you are exhausted. Even if you sleep fairly well, pain causes fatigue.

Sending healing thoughts,
Donna

tigger_gal
12-18-2003, 01:14 AM
I had some hair lose and it eventually stopped. I still have a full head of hair been on elmiron for 2 1/2 years :)
Brat

sunni
12-20-2003, 06:45 AM
Hi

I have been taking Elmiron for the past seven months and haven't noticed any hair loss. I had nausea at the beginning, but just dissolve the capsule in water now. Take it three times a day, although sometimes forget the afternoon dosage. Find it a nuisance to take on empty stomach! Is this essential? My hair is thin to start with, but very slow growing. The only other problem I have noticed is appetite loss during the day...

ICyuck
12-21-2003, 01:36 AM
I've been taking mine with meals...decided to experiment on myself...for me, it doesn't seem to make a difference but maybe I'm the only one...dunno..just thought I would report my results...

Love, ICY

tillysav
12-21-2003, 06:48 AM
Thanks for all the replies and helpful imformation. Because I'm newly dx and on Elmiron I have more questions than helpful suggestions.

Question???? How long after eating is considered an empty stomach, and if you take it first in the a.m., how long should you wait to eat breakfast?

Hungry!

vm
12-21-2003, 03:44 PM
If I remember correctly the script usually says one hour before eating or two hours after. I don't worry about it much anymore. My morning dose is often on an empty stomach and sometimes the nighttime one, but I don't worry too much and it hasn't seemed to make a difference.

dminton
12-22-2003, 11:25 AM
Yep, the directions do say 1 hour before or 2 hours after meals. I take 2 capsules in the morning right away, and 2 at night just before bed, trying to avoid eating before bed.

kat
12-22-2003, 11:48 AM
When my uro told me I didn't have to worry about taking Elmiron on an empty stomach, I wanted to hug her! It was driving me nuts and I was living my life around the Elmiron schedule. I haven't taken it on an empty stomach for more than 2 years and it's still working just fine for me. In addition, she told me it didn't matter all that much what hours I took it as long as I took it 3 times a day. It has simplified my life considerably.

I'm trying hard not to make IC the focus of my life but taking Elmiron on an empty stomach at certain hours of the day made it almost impossible to focus on much else. The trials they did for Elmiron were done on the empty-stomach schedule everyone's trying to follow, but as far as I know, they never tried it any other way. As long as my way's working, I'm sticking to it!

Maybe if you asked your dr., you'd find you didn't have to stick to a special schedule or take it on an empty stomach. Check it out...

Ginny Doll
12-23-2003, 06:12 AM
Hi My uro said the pills could be taken with meals. I often do that and have not found any big difference. If I think of it I take the meds ahead of time as i take neurontin with the Elmiron. But either way has been fine for me. When they tested the drug they used an IV form of the drug, not the capsule form we take. I have been in a remission since July and have been treated for over three years! Happy holidays! Carolyn

pleasant1
12-27-2003, 12:30 PM
Thank goodness I decided to read your messages. I have been trying to take Elmiron on an empty stomach for a year, and certainly did not a lot of the time. The disease is bad enough, but that schedule makes it harder to cope.

Steph2
01-01-2004, 12:04 PM
My uro stated that normally her patients will be on Elmiron for about 1 yr and then use the med as a therapeutic means. Any1 else's dr. suggest this method? S.

carol in canada
01-02-2004, 01:45 AM
I too am newly diagnosed and have been on Elmiron for 2 wks now. I have not experienced hair loss as yet, but do relate to being soo tired all the time. I have to lay down almost every afternoon and am in bed early at night. I guess my body is trying to heal itself, but am wondering if this is all part of IC? Also am experiencing alot of perineal pain. Others with IC do not seem to experience this as a main symptom? I find sitting in a chair or standing puts alot of pressure in the vulvar area. Could someone write back if they too are experiencing this?

firstmate
01-02-2004, 04:22 AM
Hi Carol. I, too take Elmiron. Have been for 4 years now. Also like you if I am on my feet too long, I experience extreme pain in the vulvar area. I can't sit too long either. Although sitting on a soft cushion makes a difference. Hope this helps.

tillysav
01-05-2004, 03:46 AM
Yes. I have that feeling too. I cannot be up and running (shopping, walking, standing, running around, anything, etc.) for more than 3 to 4 hours at time. Still don't know what that's about. I'm newly dx'd (late October or early November) and have been on Elmiron since then. I have lost a lot of hair and hoping it will all grow back. (used to have thick hair now it is thin) The hair loss is from Elmiron, but I do not know what causes me to be tired. After I lie down for 1/2 hour to an hour, I feel the pressure gone. Wonder if body is trying to heal itself, or if pain is causing fatigue? I used to work out everyday of my life until just the last year,because of pain I had to stop. Sometimes I think that's it. I'm tired because I'm not able to work out anymore. Still trying to find a reason for the pressure and being tired.

Not sure if this is the kind of pressure or tiredness you are talking about, but I hope it relates. I'm new -- trying to figure the what's and why's of the pain, pressure, fatigue, when to take the med's. Thanks for your replys. Tilly

tillysav
01-05-2004, 03:46 AM
Yes. I have that feeling too. I cannot be up and running (shopping, walking, standing, running around, anything, etc.) for more than 3 to 4 hours at time. Still don't know what that's about. I'm newly dx'd (late October or early November) and have been on Elmiron since then. I have lost a lot of hair and hoping it will all grow back. (used to have thick hair now it is thin) The hair loss is from Elmiron, but I do not know what causes me to be tired. After I lie down for 1/2 hour to an hour, I feel the pressure gone. Wonder if body is trying to heal itself, or if pain is causing fatigue? I used to work out everyday of my life until just the last year,because of pain I had to stop. Sometimes I think that's it. I'm tired because I'm not able to work out anymore. Still trying to find a reason for the pressure and being tired.

Not sure if this is the kind of pressure or tiredness you are talking about, but I hope it relates. I'm new -- trying to figure the what's and why's of the pain, pressure, fatigue, when to take the med's. Thanks for your replys. Tilly

carol in canada
01-06-2004, 01:49 AM
Tillymate: Thanks for responding. I have done a bit more research re: the pelvic pain/pressure and have found out that most doctors in Canada that treat IC with the usual meds. do not seem to know alot about the pelvic floor pain. I spoke with a lady who is going to Philadelphia to a clinic that specializes in IC and pelvic pain and she has had alot of success with her treatment plan from them. I am hoping that my pelvic pain and vulvar pain will ease up along with my IC the longer I'm on Elmiron, but maybe I am being too optimistic, after listening to others who have been on Elmiron for years and still have p.pain. I too am hoping this tiredness lifts soon. I hope this infor. helps. carol

jeanniebug
01-06-2004, 09:45 AM
My uro told me he wants me to stay on the Elmiron 1-2 years to see if it helps. eek I have seen others post their docs saying if it hasn't helped after 3 months they want them to stop taking it. I guess it just all depends on the doc's opinion? It has not helped me so far but I'm staying on it anwyay. (Been taking it since Sept. 12th 2003) Also..I haven't experience any hair loss. I had a hysterectomy a year ago and have had chronic pain ever since. I get horrible fatigue from my pain. Everything I've read states that chronic pain can cause alot of fatigue, because your body is using up alot of energy coping with it. Your body tries to heal itself through sleep when we don't feel well. I'm no expert but, I notice my fatigue is 10x worse during a big flare. Hope this helps. kissing

Alexa
01-06-2004, 11:25 AM
Hi tillysav,

I was on Elmiron for 3 years and it helped me tremendously. I eventually weaned myself off of it because I felt so much better and now manage my IC symptoms with diet. In addition to Elmiron, I was also on desipramine, elavil and followed the IC diet very strictly (still do!). I didn't have ANY side-effects.

I was pretty good about remembering to take it 3 times per day, but I would often take 1 in the morning and then 2 in early afternoon. I would also have a couple crackers with the Elmiron if my stomach got upset (this happened only the first week I was on it). From what I understand, Elmiron is most effective on an empty stomach because its properties can adhere to food rather than your bladder if your stomach is full. However, I think only a small amount can adhere to food, and I believe it is actually the capsule, not the Elmiron, that is the problem. I think taking Elmiron with a small snack is better than having a bad stomachache, or not taking it at all.

Good luck, and I hope Elmiron helps you!

:) Alexa

MissMary
01-07-2004, 03:15 AM
Hi everyone hi I have been on elmiron for about 3 years now. I did go off it for a few months when I was feelilng better but my ic came back hard. I want to comment about feeling tired and fatigued all the time. I am very lucky in that i am able to work from home for my family's business. I lay down everyday as much as possible. The least little thing just wears me out. i am not even able to do the grocery shopping or run the kids here and there. My wonderful,overworked,husband has to do it all. If i am able to make dinner and do a load of laundry I feel as if I'm doing good. i just hope and pray that someday I'll feel good again.

Hope
01-07-2004, 06:51 AM
I have been on it since October 1998. Started at 300 mg per day. Now I take 200 mg, mostly because I kept forgetting the mid day dose and noticed it made no difference. I made that change after being on it about 2 or 3 years. I have pretty much always taken it with food. Either right before breakfast or at bedtime -- neither on an offical empty stomach. My uro said it makes no difference, and that has been true for me. It helps enormously and I won't stop it until something better comes along.

Also, the ic diet and the elmiron is all I need to do to avoid flares.

Hope

tillysav
01-20-2004, 06:24 AM
hi
Thanks for sharing your experiences and information about Elmiron and when to take meds, etc. It's good to know. Trying to schedule Elmiron on an empty stomach was making me crazy and hungry. Elmiron is certainly helping me - don't mean to complain :D .
Sorry you guys get tired too. Thought I was alone on that one.

pattig89
05-01-2006, 12:44 PM
Hi, I have just completed 6y weeks of elmiron instills 3x a week..I had an appt.
with my uro today and she said to stop the instills for about a month to see how I
do....My question is has anyone gone this route with elmiron and how long do you
last without it in your system....?? I am a little nervous for it seems to be working
for me and I am eating much better since I started the instills and don't want to go
backwoods on my treatment....I would love to hear some response...She also said
if I need a treatment in the next month to give the office a call..I also have been
on an oxytrol patch for about a year and I guess it hasn't been working so great so
she gave me a new med called Vesicare for an overactive bladder....I was wondering
if anyone has tried this new med yet...
Thanks,
Patti G.

med.
just finished elmiron instills
oxytrol patch
allegra 180mg. once a day
rhinocourt nasal spray for allergies.

carolynyeo
05-05-2006, 12:32 AM
Hi,

I am quite frequently really tired as well. I usually have to come home after work and have an hour nap...then I usually go to bed by 11. It scares me how tired I am. But I figure I am working full time, with a three year old, a dog, cat and doing my Masters so I probably would be tired even without the IC. Major flare this week...yuck.

I am worried about the hair loss as well. I had hair loss after my baby and I almost went mad trying to cope with it. (Im pretty vain) :) and honest.

Carolyn

Grandma Susie
03-27-2007, 03:38 AM
Dear Tiger,
I want to thank you so much for your interstim and elmiron info. I'm on the verge of having an interstim put in but only for pain control and my doctor said it would help with the pain possible. I have had Hunner's ulcers removed twice in six mos. and had complications with the last surgery- a crack he said in the wall- Talk about PAIN!
I ALSO have fibromyalgia and cronic fatigue. I've had that for 30 years and take neurontin, trazadone, for that. Also have osteo arthritis and a very bad knee- may have to have surgery for that. You have opened my eyes about the intertim and the more I read the more I think I need to put it off. MY doc is very insistant about it. I really think he is at a loss for my develpment of so many ulcer's and said I had an EXTREME case of IC. Is this the answer??? I've also been taking Elmiron for 6 mos. and think it isn't really helping (obiviously). PLUS I don't want somach issues develping either. May reduce it to 2 times a day. Thank you for opening my eyes. This site is just a miracle for me and I'm sure for so many of us.
Blessings

amartaingirl
03-27-2007, 08:44 AM
took elmiron 3xday
I noticed Hair loss around the 3 month mark.
i would run my fingers threw my hair..and there was always a strand or 3
so i freaked

so i cut back to 1xday (and in place of the other 2..i took desertharverst.com aloe vera pills)'

that hair loss..with dry hair..running my fingers over stopped.
but there was still a little bit..in the shower.

so i freaked again
and have completely stopped elimron
now taking 3 aloe pills
still feel fine.

its been about a week
havent washed my hair yet.
kinda afraid. im going to wash it on thurday.

i usually only wash it like once a week

not sure how long until elmiron runs all the way threw my system

i have a theory that this 4% of people with hair loss
are the same the skinny people..who are always cold anyway.
at least thats me.

smcclafferty
03-27-2007, 04:23 PM
The reason they say to take Elmiron on an empty stomach is because of the fact that food may interfere with the absorption of the medicine through the stomach and intestines. You may not get the proper amount into your system. For example, not that a lot of people drink alcohol with IC, but it's commonly known that you get more "drunk" on an empty stomach. And if you are already a bit woozy, did you notice how if you eat something, it can put a stop to that? Whatever works for you, if it helps you on a full stomach, that's great!

Zygala87
03-28-2007, 02:14 AM
Hello Tilly. I am no expert for sure but I don't think Elmiron could be making your hair fall out just taking it for two weeks. I could well be wrong. I was told not to expect the Elmiron to start working for 6 months or more. It is working now (7th month). I was so upset when I first came down with awful pain and DX with IC that I was more anxious then I have ever been. Nerves can cause ones hair to fall out and many more other problems. The Elmiron is helping me a lot. Many people say it does not help them. We are all so different. I care about you and hope you are feeling better very soon. Hug, Ziggy

jenleigh
04-09-2007, 03:55 PM
I definitely had a lot of hair loss in the first week of taking it. I have had a huge amount of hair loss from it for months now. Then I started another drug which caused even more hair loss, plus the elmiron. I have had chronic fatigue for over a year with this illness. It is definitely tied in with the IC. Not sure if Elmiron made it worse, but it started before Elmiron.

justice4j
07-24-2007, 07:04 PM
I have been taking Elmiron, with my uros approval, 2x, rather than 3x per day. I found, especially once I started to feel better, that I was always forgetting the "middle" dose. I always take AM E dose on an empty stomach - with Nexium and Levoxyl. My uro says that a light snack with E is fine, and so sometimes I do that for the nighttime dose.

I don't have any nauseas with E. But, my hair has thinned considerably. But I'm also menopausal - 56 - but on bioidentical hormone therapy. Jan

carolynyeo
07-25-2007, 01:18 AM
Hi,

I have not had any hair loss, actually the opposite. I have not been losing hair on Elmiron, I have been gaining hair. My hair seems thicker now than ever.

Weird.

bradydot
08-07-2007, 08:26 AM
I have been taking Elmiron since 1999. The three times a day thing was a pain/but my doc has me take two in the am and one in the pm. This has worked out a lot better for me. I try occassionally to reduce my elmiron and have always paid the price with a flair, which is what I am in the middle of now. My hair is thin as well, a few months ago I was losing it more than normal and I asked my doctor could it be the elmiron after all these years. He said that he did not think so. My main thing with Elmiron is the expense, even with insurance I am paying close to 100.00 per month for just this med. But I do have to say that after reading some of the problems that fellow IC'ers are experiencing, I feel very blessed. I do not have the urgency all the time but when I have a flair I have extreme pain and burning when I urinate-BLOATING-and general discomfort.:loco:

ICKT
08-14-2007, 02:41 PM
I took Elmiron for about a year and a half to give it a fair shot at working. Unfortunately it didn't help. My side effects did not include hair loss. However, they did include extra fatigue, and dizzness. Sometimes when I'd stand up I'd kind of almost black out. I'm sure that's due to the blood thinning properties. Anyway, I sincerely hope it works for you and that you don't have any side effects! :pray:

Best Wishes!

Wolfe
08-16-2007, 06:27 AM
I really appreciate everyone's input on their experiences with Elmiron. It helps to know what to expect and what works for other people.

I've been taking Elmiron on and off for around 13 years. It started working for me within just a few weeks. It bothered my stomach, so my uro suggested taking it with a snack. I do, and it works well for me. So well that sometimes, for months at a time, I'll only take one capsule each morning and skip the other two. I have in the past gone off Elmiron for six months or a year, and then gone back on when I felt symptoms coming back. I will admit that after all these years, the "remissions" don't seem to be happening anymore.

As for the fatigue, I find that if I'm especially tired, I'm about to have a flare. I'll be dragging badly for a day or so and then wake up in extreme pain, so I've learned to pace myself. I think it really wrings the body out to handle the inflammation. My poor body seems to have spent years' worth of energy continuously healing something that never does go away. Come to think of it, my body's done pretty doggone well!

I do experience some hair loss, but it keeps growing back. And it's worth the relief. I wish everyone could benefit as much from Elmiron as I have over the years.

LeeAnn
08-17-2007, 05:35 AM
I take Elmiron with food too.

Dr. Daniel Brookhoff (sp?) has been quoted in IC articles saying that it is okay to take Elmiron with food. These IC articles I'm referring too have been sold right here on this site by the ICN.

The reason it says to take it on an empty stomach is b/c that is how the clinical trials were completed when Elmiron was approved by the FDA. No one has technically studied how well it works on a full stomach but most doctors think it will work fine. I personally know that Elmiron is working for me and I do take it with food.

HillaryD
08-18-2007, 04:57 PM
I was DX'd with IC in Feb of 2003, which is when I also started taking Elmiron. I had no hair loss, just an upset stomach, which went away after a couple of years being on it. I was on it for almost 2 years, but had to stop due to losing my insurance. Now that I have insurance again my new Uro wants me to start taking it again. I can't do this right now as it costs $55 each time to fill it. He wants me taking 4 pills a day, and the bottle only comes with 100 pills, so I would have to get it filled more than once a month. He told me that I would be on Elmiron for the rest of my life, which I have been told by another Uro. Elmiron did help me some while I was on it, and I probably would have gotten better results had I been following the diet better. I know I will eventually go back on it, but it won't be until I can afford it. Good luck to you!

boukie
12-07-2007, 03:53 PM
Yes I have always had perineal paid since I've had IC. It comes and goes, and it's horrible I hate it. I am taking Elmiron, vesicare, hydroxyzine, and flomax. I am still getting the pain. What can we do?

boukie
12-07-2007, 03:55 PM
Yes I have always had perineal pain since I have had IC, which is 7 months. I take Elmiron, Vesicare, hydroxyzine, and flomax and sometimes pyridium. What else can we take for the uncomfortable pain. It sometimes wakes me up at night, I feel it in my sleep. I hate it.

boukie
12-07-2007, 04:00 PM
Yes, I think the capsule on the Elmiron can upset your stomach. It did for me, so now I take elmiron the powder part only. My stomach has been a lot better.

Mare
12-08-2007, 03:57 PM
I have been taking Elmiron since 1997 and still have very thick hair. I guess each person's body reacts to this drug differently. I hope that you receive some relief from this or some other treatment. warm regards, Mare

BBB
12-08-2007, 09:18 PM
I always love to see when someone picks up an old thread. This one started in 2004. It is neat to see the history.

ccnil
03-30-2012, 09:34 AM
If pain is keeping you awake at nights, it's not surprising that you are exhausted. Even if you sleep fairly well, pain causes fatigue.

Sending healing thoughts,
Donna

My elmiron just got approved by my insurance. Since i'm already taking elavil100mg, up to 2mg xanex, and a pain killer as needed, i'm afraid to add ANOTHER pill. Having my first hydrodistention in 10 days. Should I start it now or wait. I am in soo much pain. I haven't worked at all since last June. Any advice would be appreciated. And yes I do believe chronic pain is responsible for my lack of rest, leading to stress any anxiety. Its hard to think that i could be like this several more months before I get any relief. God willing.

mary124
04-03-2012, 03:00 AM
I have been taking elmiron since it first came out and that was in 1997; I also take Elavil and neurotin. I follow the diet to an degree as I am not that diet sensitive, so if you are not following it I would suggest that you do. You can either get a list of foods from your doctor or pull it down from the website here. Good luck on your hydro. Is this your first one? I have them every 6-8 months. As for not getting your prescription for Elmiron filled now or wait, I would suggest you talk to your doctor.

Sweetpea85
04-03-2012, 03:37 AM
Ive Been taking elmiron since feb 1st 2012 and its seems to be helping me alot. I have noticed hair loss but its really like im shedding and some days it can be a good amount but you cant notice my hair loss at all so far so I pray it stays this way. In May ill have been on it for three months. But since ive been sticking to the IC diet and elmiron ive already noticed an imporvement in my pain level which is awesome. I feel i just keep getting better and better everyday now :)

tee34446
04-04-2012, 05:31 AM
I notice after I take the Elmiron, I get very hungrey.
I am Diabetic type 2 and my blood sugar drops between breakfast and lunch.
Does anyone else have this problem?

Jinny Jean
04-12-2012, 06:25 AM
I am so happy to have elmiron, I just hope that I never lose the helpful effect of it! I was so scared in the beginning to use it, but so glad that I got over that fear. It has been my life saver :D I hope this thread can encourage newbies and people who are scared to try it, to give it a go :)

Jenn