Question about Elmiron

[ihateic2003]

i have been taking Elmiron for going on 2 years now. My hair is a little bit thinner & keep lossing it But that's ok. I would much rather feel better than worry about my hair. with this medician i feel better (Pain wise) for while but not any more. My GI & migraine problumes are getting worse these days a lot. all this time taking Elmiron i am haveing pressure, urgecy, Frequency, bloating, heaviness. My IBS(constipation) got worse theses days. My eating list getting very small. basically drink lots of water. i need you to help me. is this only me or any body else have that problume too.

[Alexa]

Hi there,

I'm sorry to hear you're not feeling well. Elmiron really helped me with urgency and frequency, so I'm surprised to hear that it's getting worse for you after two years. Have you found any benefit from taking Elmiron? I would definitely go back to your doctor and discuss these symptoms that you are experiencing. Maybe Elmiron is not for you? I actually didn't have any side effects from Elmiron, so I'm sorry I can't help much but I would definitely discuss this with your doctor.

Hope you're feeling better soon.

Take care,
Alexa

[vm]

I have heard some others say that Elmiron helped initially and then seemed not to help anymore. I don't think that is the norm for people it helps, but I have heard it mentioned. Are you on any other meds (I take 3 others w/ the Elmiron to keep my symptoms at bay) or have you started any other meds that may have exacerbated your IC?

[liz2]

I have had very good results with Elmiron, but it is not the only treatment protocol that I use. I have been on Elmiron since 1996.

[Melissa27]

I have been on elmiron for a year an a half and I have had alot of flare-ups lately. My diet is also getting very very limited and I have been concerned. Someone (one this site) suggested that it could be the rapid weight loss that is making my urine acidic and causing the flare. So it is sort of a vicious circle. I also haven't been taking my elmiron very regularly for the last 3-4 months and I thought that could be why. I don't know if either of those things fit you, but I know how you are feeling! It is very frustrating!!!!! Hang in there! :) ))))))

Melissa

[TammyM]

I had surgery on 18 January and started taking Elmiron right after surgery. The only side effect that I have is hair loss. I'm getting very concerned about it. I can tell that my hair is thinning already. Thank goodness I have (had) very thick hair. But the Elmiron is helping with the pain, urgency, and frequency. So I am sleeping a little better. I wake up one time versus many times. I'll talk to the Dr. about it at my appt. in March - especially about monitoring my liver. That concerns me more. If I have to get my hair cut short I am willing to do that.

[pattig89]

I wonder if any of you can help me with this question about Elmiron...I have been
having DMSO treatments instiillations in the bladder once a week for 6 weeks....NOw
after this the Dr. wants to try me on Elmiron....That is the bladder instillation ones.
They insert the medicine into my bladder like the DMSO 3x's a week for 6 weeks..My question is has anyone tried it this way and has it worked....Where I have had such
good results with the DMSO's I guess the dr. thinks this might be the way to go..
Though I have never taken Elmiron orally I wasn't sure what I should do...I am
too concerned about side effects and oral meds seem to not like me sometimes.
But I am hoping that this will work as good as the DMSO but not sure ..
I guess going to the uro every week 3x a week is not thrilling me..But I will do
anything to feel better and get great results...If anyone of you have ever taken
Elmiron this way could you write back and let me know what I am getting into.
And I also love anyones advice on this matter...Thanks for being there on this
message board it has truly been a god sent for me....I wish you all well...
Patti G.

IC for 2 yrs.
Meds
Oxytrol patch
rhinocourt for allergies
allegra 180mg. for allergies
Prelief on occasion for acid
premarin cream on occasion

[rosesitty]

Patti - The research says that only 4% of oral Elmiron actually ends up in your bladder (which isn't much) and the rest is excreted. One of the things that some uros have been doing is instilling the Elmiron directly; they just open two capsules and put it into sterile water (which is what your doc wants to do). It makes sense getting 100% where it's supposed to be, however, there hasn't been much testing to see if it actually works or not. I was doing heparin instills while taking oral Elmiron, but then switched for a couple of weeks to Elmiron instills. I didn't notice much difference. Make sure they add lidocaine and sodium bicarb to the Elmiron. I switched back to the heparin, and am doing a 3x per week for 3-4 week series. Hope this helps answer at least part of your question.
IhateIC2003 - I would contact your doctor. Besides Elmiron, there's plenty of other treatments to try to help with your symptoms. It could be that for you the medication has run its course, or perhaps it something else. You need to talk with your doc.
Stephanie
Stephanie

[carezeb]

I wonder if any of you can help me with this question about Elmiron...I have been
having DMSO treatments instiillations in the bladder once a week for 6 weeks....NOw
after this the Dr. wants to try me on Elmiron....That is the bladder instillation ones.
They insert the medicine into my bladder like the DMSO 3x's a week for 6 weeks..My question is has anyone tried it this way and has it worked....Where I have had such
good results with the DMSO's I guess the dr. thinks this might be the way to go..
Though I have never taken Elmiron orally I wasn't sure what I should do...I am
too concerned about side effects and oral meds seem to not like me sometimes.
But I am hoping that this will work as good as the DMSO but not sure ..
I guess going to the uro every week 3x a week is not thrilling me..But I will do
anything to feel better and get great results...If anyone of you have ever taken
Elmiron this way could you write back and let me know what I am getting into.
And I also love anyones advice on this matter...Thanks for being there on this
message board it has truly been a god sent for me....I wish you all well...
Patti G.

IC for 2 yrs.
Meds
Oxytrol patch
rhinocourt for allergies
allegra 180mg. for allergies
Prelief on occasion for acid
premarin cream on occasion

Hi,

I had my first instillation with Elmiron and thought I was the only one since all the research came up with nothing but taking it orally. After going to five different Dr's and getting five different therapys I finally went to a Uro-Gynocologist. He is the one that is doing the med directly into the bladder because when taking it orally you only get 2% of its effectiveness, so he tells me. I have just had one and will be having this proceedure done once a week for how long I do not know. I hope it helps repair my bladder wall because nothing helps the pain except Percercet and that is not something I can keep taking because of addiction so Dr's tell me. They all gave me scrips for Motrin but this does nothing for the pain except contipate me. Let me know how it is going with you and if you see any results yet.
Hope to hear from you,
Rose

[rosesitty]

Rose, I've had a few Elmiron instillations, but nothing spectacular happened. The problem is, it's not approved by the FDA to be instilled, only taken orally, and nobody knows really what it does. Since there's been no testing, does it stay inside? Is it voided out with the urine? Only questions. I've heard that orally only 4% stays inside the bladder, that's better than 2%, but not so good! LOL I hope the instills help you.
Keep us posted.
Stephanie