Elmiron & increased pain?

[hikeeba]

Hi there, newbie here -

I've had persistant abdominal pain for about three years now - I had a cyctoscopy w/ hydrodistention about three weeks ago and the doctor diagnosed IC and put me on Elmiron.

Well, exactly one week later, I find myself in searing, incredible pain. I mean, I've been dealing with pain every day, had 3 UTIs in 6 weeks, and a double kidney infection that hospitalized me for a week and I've NEVER had anything like this.

The pain's pretty constant, but it gets worse in these little waves. If it isn't my bladder, it's definitely right next to it. Urimax and/or Pyridium have helped a tiny bit, but I still need hardcore stuff like vicodin or dilaudid just to DULL the pain. It's a freaking nightmare!

Has anyone else had Elmiron trigger worsening abdominal pain? And if so, what now?

Thanks, hikeeba

PS - I am SO GLAD to find this community! I know it's a cliche, but I truly thought I was the only one!

[Scomegys]

Hi, I am new also. I haven't taken any of the prescribed medications. I am into alternative medicine to treat the condition. It all depends on the person on what treatment is best for them. Have you tried to eliminate foods that cause pain?
I've been taking two herbal supplements to increase my immunity and today I started a herbal supplement to detoxify my body. I haven't felt pain for about a week now but the frequency is still there. I'm hoping that will go away with this type of medicine I'm taking.
Maybe it is the combination of diet and the type of treatment that works best for you.

Best of luck,
Stephanie

[Scomegys]

Oh and I heard Elmiron takes a while to start working...like three months!

[hikeeba]

Yeah, I've been doing the diet for two months now. At first it helped, and combined with meds I had my pain really well under control. Then (something) happened a week after I started the Elmiron, and I'm worse than ever! I'm going to keep taking the Elmiron for a few months to get to full effect, but in the meantime I'm worried my doctor's going to write off this new pain. I just want to find out if it's normal/common, because she's NOT taking me seriously. But then, I don't know if she takes IC on the whole seriously. I'm looking for a new doctor.

hikeeba

PS - What sort of herbal suppliments are you taking? I know I have an immune problem with my kidneys either a symptom of or caused by the IC, so I'm interested in anything that might help with that. Seeing as pain, and not frequency, is my big problem, your combo could help a bunch!

[Scomegys]

Hi,
check your pm's. I'll give it to you there :) I think that is the rule here...

[vm]

I would guess that since you just had the hydro 3 weeks ago, have had 6 UTIs in the past 6 weeks, a kidney infection, etc. - that those are what is causing such irritation to your bladder and not the Elmiron.

[ICNDonna]

Have you been checked for infection? Any time we are catheterized, it puts us at risk for infection --- and since you recently had a procedure done, that could very well happen.

Sending healing thoughts,
Donna

[theclownster]

Hi there! I'm sorry to hear you are in so much pain. The very first time I tried elmiron, about a week after starting, I started to experience increased symptoms especially the pain. I called my doctor immediately and he took me off of all of my meds for a week. He had me come in for a visit and then directed me to start my meds again the following week. He said it could have been a fluke thing or it could be from the meds and hopefully being off of them for a week would help.

I didn't try the elmiron again for another month (I was put on some medication for phlebitis and my primary care did not want me to be taking the elmiron with that med). So, when I tried it again, I started to experience an increase in symptoms. The other meds my doctor gave me helped tremendously, so I stopped taking the elmiron and had a discussion with the uro. He agreed that i should just stop the elmiron. I don't want to give you any advice about meds, since I'm not a doctor, but I would strongly encourage you to talk to your doctor so that he can help you with this. It's so hard to be in so much pain. All meds can have potential side effects, but it's different for every person.

I hope that you can get some relief soon. Take Care!

Hugs-
Jennifer

[Deb1130]

Hi,
I'm also newly diagnosed 6 weeks ago I had the cysto/distention and I've been in almost unbearable pain ever since. I don't believe that it is the elmiron and I'm holding out hope that it will help eventually. A week before the cysto I had the pottasium test and ever since then the pain is almost non stop. Prior to these two test I had occasional pain but mostly just urgency and up all night having to go. I can't help but think that these 2 test are what has me flaring so bad that along with the stress of my upcoming surgery for pelvic floor problems, This board has helped me alot and I'm trying everything I can to get the pain under control. I wish you well in finding what will help you.

Deb

[priny]

Hi,

I'm newly diagnosed, with a mild case so far. I have been on Elmiron for about one month, and in the first week after I started I had my first real experience of IC pain (I had really only had frequency before except for one unbelievable night when I got up about 20 times after taking a medicine with Pseudophed in it). I also notice that one of the side effects listed in the Elmiron patient info is "abdominal pain." I know a lot of people seem to have success with Elmiron, but I am very ambivalent about it and I think I am going to stop treatment. I have had a kind of headache recently that I have never felt before, and "headache" is also one of the side effects.

I am a little suspicious of Elmiron for three reasons: 1) they don't really know how it works; 2) it hasn't been on the market long enough for us to find out about long-term side effects; and 3) in the patient info, the makers try to say that "fogginess" is an effect of IC and not of the Elmiron. I know for a fact that I have felt foggy ever since I started the medication, and I do not feel *that* kind of foggy just from lack of sleep. It disturbs me that they would try to tell patients that fogginess was not an effect of Elmiron - when, clearly, the entire reason they feel they need to explain it is because many people have complained that they feel foggy!

I realize that the mildness of my case allows me more latitude than some others may feel, but I am not cheerleading for Elmiron at this point. :-)

[theclownster]

HI Priny! I tried to pm you but discovered I can't. I just wanted to offer my support in what you are going through with your thoughts on Elmiron. I had increased pain and a headache I've never had before. I tried it two separate times and decided it was not for me. I'm not trying to persuade you one way or another - just telling you to offer my support and let you know you are not alone in your feelings about elmiron. Fortunately when I told my uro, he was pretty supportive. Maybe you can talk to your doctor and she what he/she says. Have you found any help from other meds?

I hope you start to feel better soon!
Jennifer

[priny]

Hi clownster!

I just enabled private messaging - I'm paranoid about that because as a former AOL member I was deluged by nasty Instant Messages. :-) I assume I'll be pretty safe here.

I appreciate your support! It is so good to know that someone else has experienced this - especially the headache, which is the reason I am still up and typing at 1am Eastern.

My doctor seems like a really nice and enthusiastic guy, but he is very young. (Looks about my age, 32. That is a major life transition when your doctors start to seem like classmates instead of dads or moms!) Not that his youth means he doesn't know a lot, but I was a little startled when he told me "OK, we're going to give you Elmiron and then put you under general anesthesia for a hydrodistension treatment!" as casually as if he had just said "Take two aspirin!" I said no thanks to the hydrodistension, simply because I am not casual about any major medical procedures due to some scary moments associated with the birth of my first baby (who is just precious as can be now, at 16 months). He didn't really mention any alternatives, but that could be because I told him I wanted to try the diet and the Elmiron and see what happened (I'm also on Ditropan, which I think is doing good things). In addition, I'm going in for "exercise training" with a really nice nurse in about a week.

Thanks again for your nice message!

[theclownster]

HI Priny! I just sent you a pm.

Hope you feel better soon!
Jennifer

[Sharon]

About 6 months ago my gyno gave me Elmiron to try. I don't take any other medications, and most days I have my pain under control. I noticed after taking Elmiron for almost a week that my symptoms also increased. I stopped the Elmiron, and tried it again a month or so later. Same thing happened.

I'm sorry to hear that Elmiron didn't work for you either, I had such high hopes for it.

[vm]

I have heard of others who have had more symptoms on Elmiron, too.

I am not discounting anything the rest of you are saying - please believe me. But I do want to say something to others who may be lurking and may be scared to try Elmiron: MANY of us take Elmiron and have no side effects whatsoever. I have no fogginess, no abdominal pain, no hair loss, no liver problems, etc. Many of us take it and do just fine. In fact, many of us have almost complete symptom relief. So, don't completely rule it out if you are considering it. Weigh both sides of the coin. :)

[theclownster]

I agree Kim. You should always weigh your options and give it a try. That's why I tried the elmiron a second time - just for peace of mind. Also because I just wanted help so bad. I know I take meds that others can't. Everyone is different and you can't know how you will react to any med unless you try it.

Wishing everyone success in their med choices-
Jennifer

[DeDe Kirby]

I also experience increased pain with Elmiron and I have taken it for over 4 months. I decided to tough it out and see if I got any better at the advice of two different urologists. I do not take it now, and I am debating whether to go back on it again. My doctors were very skeptical that the Elmiron made my symptons worse, but you know if the doctor has never had IC or taken Elmiron, what do they really know?
It can happen - I also suggest you talk to your doctor again. I am now searching for a doctor that will really listen to what I am saying. Make sure yours does! If it hurts, it hurts.
DD
PS - I am so glad you posted this message - I have not heard of many women that have had increased pain.

[ICLori]

DD, I experienced disbelief from my doctor, too. He acted like I was lying and/or crazy.

I wish these docs would believe us.

There is not enough known about this disease, for them to have the luxury of pretending to know it all and not listening to their patients. Am I right?

Blessings, Lori

[DeDe Kirby]

Absolutely, Lori. However, you know when your body is telling you something is not right. You just have to have faith in yourself.
DeDe

[heiwalove]

i've also heard of elmiron increasing pain. it's all so individualized. definitely talk to your doctor.

and scomegys, can i also ask what herbal meds you are taking? could you pm me?
<3