I've Been Taken Off of Elmiron

[KansasGirl]

It's been a couple of weeks since I've posted but I wanted to update those that read my last post about the side effects of Elmiron and the question if Elmiron had been causing me problems. The last time my UR tested my blood to check my liver levels, they were elevated. My UR took me off of Elmiron and wanted to recheck my blood in 2 weeks. I had that test done last Wednesday and got the results on Thursday. My liver levels are almost back to normal! Yippee!! My Dr. thinks a lot of the problems I've been having this year are due to the Elmiron. I don't want to scare anyone however, I've always been very sensitive to drugs and if there's some rare side effect, it usually happens to me. I was put on Elmiron Feb. 2005. Since taking Elmiron I experienced fatigue, wanting to sleep, a lot, and having troubles waking up. I had dry eyes, heartburn, a lot, abdominal pain, very intense, and bloody diarrhea. I was also dealing with depression and my doctor said that was also a side effect of Elmiron. Granted, I am not totally blaming ELmiron for that, but I do think it contributed. People just need to be aware of the possible side effects. When I got into trouble in March physically and began to ask the question could this be happening because of the Elmiron, I was told no. Now I have learned after all this to do more research on any drug my doctors prescribe.

Gotta go. Hope you all have a very Merry Christmas!
Kansas Girl

[traceann]

Hey Kansas Girl! Thanks for the update! Yep, we all react differently to meds don't we? I am glad that this change has helped you to get rid of yucky things you had going on! I am currently experimenting on my Elmiron dosage, I've been on it for over a year now and doing really well, so thought I'd see how backing off on it a bit (to one pill a day or every other day) affects my intestinal problems...we shall see. So far the bladder hasn't complained! ;)

Hugs!
:)

[franya]

Hi Guys,

Just wanted to say how elmiron effected me. I was on 900mgs day they had just upped me from 600mg day. I started feeling like I was lethargic tired and had nausea. I have epilepsy and started having episodes and a lot of jerking I got this before from a couple of other meds it was called toxicity. So I called my doc and he told me to go off it all!! I was shocked because it did help and there a so few meds out there for our symptoms that work for me. I do feel much better now. Do you guys know of anything else that helps with frequency? I am on oxytrol as well.

[KansasGirl]

Hey Franya:

Good morning! Havent been to the boards lately. Since I've been off of Elmiron I am doing so much better. THis has probably been addressed before but I'll tell you what is working for me. I have just been watching my diet very closely. I take Prelief if I feel like my bladder isn't responding well to something I've eaten and that helps me. I use *********, glycential multi-vitamins, and the Phytaloe. I've been on these products for 3 years now and can say that after starting them I began to feel better rapidly. I really feel that these products are making me much healthier. I believe they keep my symptoms to a minimum. My UR even told me that my symptoms didn't match the pictures - the severity - of my IC. I went for years.... undiagnosed and my health deteriorating. Anyway that is what is working for me. I wish you much success in discovering what works for your body and I'm glad you too are feeling much better now. Have a good day! Gotta go!
Kansas Girl

[Betsie]

While it clearly seems a good choice for you given the elevated liver function, I really hope you are pursuing some of these other side effects with a gastroenterologist.

I too am re-evaluating my Elmiron-long story, but no "in your face symptoms".

However, after being a GI patient for many years and not new to IBS, I struggled for months before realizing something else was going on.

Short version is I now have Ulcerative Colitis and am really struggling with the remission desperately needed. Hence, the need to re evaluate anything that may contribute, not just the Elmiron. It does have side effects for many, but has been a wonder drug for me. Right now nothing feels like a wonder drug... :rolleyes:

While I am certainly not suggesting your Dr is wrong, I don't want people who are doing well on it otherwise to worry needlessly. But some of your symptoms do raise other red flags. Just my opinion of course.

Like Traceann, I too wonder if I can finally go to a lower dose and still feel successful with it. I never want to go back to life pre-Elmiron! It is a tender balance game for us all and different for each of us to evaluate.

Good luck and hoping your IC can be kept under control with the many other treatment available.

[mary124]

I've been on Elmiron since 1997, and just recently had my blood levels checked this pass year. Everything was ok. I did ask how often I need to be check and they told me about once a year.

[dminton]

I went off Elmiron after 3 years due to diarrhea that just worsened over time. I am doing much better now in that area. The improvement was almost immediate!

[traceann]

Wow Franya, that seems like an awfully high dosage (the 900mg) for the Elmiron! Did they try you on the "standard" dose of 100mg 3x's a day at all? (I say "standard" as the majority of us seem to have that dosing schedule, but I do know of quite a few who take 400 mg - 200 in a.m. and 200 in the p.m., and I have heard of 600mg a day...) I am so sorry to hear you had such a hard time there, cripes, that's awful!

I know what you mean Betsie, after my bout with Lymphocytic colitis this past year, I am checking into all the possible contributors as well. It is a balance, just like you said. I have stopped taking all ibuprophen products (well known GI aggrivator), and finding that balance of Elmiron that keeps bladder happy and GI probs to a minimum should that also be a factor in the dilemma. The doc told me there is no difinitive factor as to what started it - could have been medication induced (at the time I was using Motrin a lot, and taking the Elmiron), an intestinal bug could have set up the following events - there's no way to say for sure. So, I took the shotgun approach - I reduced or elimated all substances that could be contributing. So far so good, lol. (knock on wood) ;)

[ICLori]

I had elevated liver enzymes when I was placed on 900 mg (3 pills 3 times per day) too. That coupled with the fact that my voiding diary showed my symptoms were better OFF the Elmiron rather than ON it helped my uro and I decide to discontinue Elmiron. I had been on it for over a year by that time so there was plenty of time for it to work, if it was going to.

Even so, I faced a lot of opposition on the boards for that decision, people were convinced that I was making the wrong choice by going off Elmiron. Sometimes when a drug helps a person, they become very loyal to that drug.

I'm sure you are making the best decision for you. Hopefully another med will help you and you'll soon go into remission.

Blessings,
Lori

[Betsie]

I was on 300 mgs daily as most are...did well at about 9 months to a year and then slid backwards. I was then put on 600 mgs daily and it was the magic bullet for me. No elevated liver enzymes, no side effects, nada!

My Dr feels pretty strongly that like most with UC Dx it was probably started at sometime with some sort of bacterial infection (undetected) that wasn't present in cultures, but was likely present at an earlier time...though I had come off a very stressful time in my life, it was unlikely the "cause"....exacerbated it most likely, but not the cause.

I am so overwhelmed and tired from it all, the weight loss, the inability to get my life back on track and the obvious nutritional complications. So, back to the Elmiron...I wonder if going to 300 daily is something I can manage and more importantly would live to see if it might impact any progress.

To top it off, I have decided to look for another URO, which is as we all know a huge pain in the ******!!!! Timing stinks....but trying to take things in stride, just not today!

[vm]

Franya - I am so glad you figured out it was the Elmiron causing your problems. I hope you're able to find some other treatments to help you out. Sounds like maybe you've already found some other things already. :) :) :)

[rapsody0492]

Hi: Ive been reading this Elmiron thread with great interest. I'm new on it (being a newbie) and am on 300 mgs a day. My question is this, has anyone's symptoms improved enough from diet that they were able to get off Elmiron permanently? I've seen lots of accounts of discontinuing because of side effects, but no one that escaped for good behavior...aka good diet control.

Jane aka rapsody0492

[KansasGirl]

Hi Rapsody0492!
When I originally went to a UR over a year ago now he pretty much suspected IC, but it was going to be a month before he could do the Hydrodistention test to confirm the diagnosis. He put on the diet at that time, in hopes that my symptoms would get better. And after being on the diet for a week I noticed significant improvement and after 2 weeks was doing really well. I had even thought then, that I didn't need to go on any meds if diagnosed. But, after my diagnosis my UR really wanted me on ELmiron. And I think that's the normal treatment for IC. But, now after my experience with it I wish I would have stuck with my gut feeling and just done the diet. I've been off Elmiron now since December and all I'm doing is watching what I eat. If I really want something that's a no no (around the holiday) I take Prelief before I eat. I have been doing great!!! I realize that may not work for everyone, but it's working for me. THe other products that I mentioned to Franya previously are a ********* product which have really helped me get healthier, but even they wouldn't help my symptoms if I didn't want my diet also. What's your story? Your symptoms, etc.? If I can be of any other help, just let me know.
Good luck to you.
KansasGirl

[creatingkarma]

Wow! You were on a high dosage! I couldn't take Elmiron because it gave me a couple bloody noses a day. I'm very sensitive to meds too! I'm glad that you're feeling much better now!

[rosesitty]

I've been very hesitant to take Elmiron because I already have elevated liver enzymes. In conjunction with my PCP and uro, we are going to do liver tests every 3-4 weeks. My uro wants me on it for 3 months, to try and get me over this flare hump and back to my baseline. Will keep you informed as to how things are going. I think any info we can provide to each other only empowers us more and helps us in our treatment.

[pattig89]

I too have been hestitant to start Elmiron..But I feel I need more than just
the DMSO's I have been doing...I too have lost weight and really miss eating those
foods that I haven't had in about 2yrs....I do watch my diet and I have noticed
when I do I don't get any of the symtoms...I am hoping I will be one of the lucky
ones and the Elmiron will work..I guess I won't know till I try..I am sorry to hear
that some of you have had a difficult time with this med...If we only had a crystal
ball....Well it is still nice to have people that are in the same boat and understand
what it is like to have to take a med and worry about side effects...Thanks for
listening...I hope that everyone finds their magic drug to this disease....What
a great thing that would be..
Anyway keep up the good work with communicating with everyone.
Patti G.

[traceann]

Hey Patti! I think, (just my thoughts, lol) that more people have luck with it than those who don't. We just tend to hear more of the yucky side effects of it here, because all the people who it's working brilliantly for (well, most anyway, ;) ) are out doin' their thing :) And the ones who it's not quite working out for, this is the place to research other alternatives, etc ya know? Just my thoughts... ;)

Hugs!
:)