Elmiron and Pain

[carole]

I've only been on Elmiron for 5 days but I am now experiencing tremendous bladder pain. I've never had this much pain before so I'm thinking it's the Elmiron.
Anybody else have this problem? This does not feel like a normal flare. The pain is increasing everyday which is making me think it's the Elmiron. There is absolutely nothing else it can be. I am eating and doing the same thing I've done for 2 years.

[sailawaygrl]

I haven't heard anyone say they have had this problem but it could be the elmiron. I would say the only way to know for sure is to stop and see if the flare gets better. Be sure to let your DR know, as I am sure you know to do already.

I hope you find the root of the pain soon, flaring is no fun and you sound like you are in a lot of pain.

Sandra

[carole]

sailawaygrl thank you for your response. Yes I have been uncomfortable and today was the worse. I had to take Naproxen for the pain to get through my work day. I am going to stop the Elmiron for a few days and see if the pain goes away. The other thing too is that it was affecting my moods. I will call the doctor tomorrow and see what he has to say. I was really hoping it would help. My next step/choice is Uracyst. My doctor mentioned it on my last appointment. I hope that helps.

[ICNDonna]

Some people find the capsule containing the elmiron is the problem. You might want to talk with your doctor about trying emptying the capsule into water and take it that way, discarding the empty capsule.

Donna

[kadi]

Hi Carole,
Elmiron made my IC much much worse. It felt like I had something scratching the inside of my bladder and increased my frequency to the point I couldn't even drive the 25 minutes home from work without having to stop to find a bathroom. I called the nurse at Ortho McNeil and she said they have seen that some patients allergic to sulfa, do not do well with Elmiron. Since I'm allergic to sulfa, I stopped the Elmiron and got better again. I was on the Elmiron for 2 months. Once I stopped it, I was better in about 2 weeks. I was so disappointed because I'd so much hoped it would work!!!

Fortunately, pelvic floor physical therapy and home instillations of marcaine, heparin, sodium bicarbonate, were helpful, so while it was disappointing that the Elmiron was a failure, I did find other things that worked! I'm just saying this because my urologist at the time was so upset that I'd had a bad reaction to the Atarax and Elmiron, he told me he had nothing more to offer me and I was desperate. He did refer me to Stanford and the doctor there prescribed the physical therapy,pain medication as needed, and the home instillations. I don't want you to feel like you're out of options - there are still treatments out there to try.

Good luck! I hope that the Elmiron does work out for you, but if it doesn't - do try one of the other options - they can really help!

Best,

[carole]

Donna I thought that was if it was causing nausea. I don't have any nausea just bladder pain.

[carole]

Thanks Kadi I will try Uracyst and see how that works. I've always been so sensitive to medications sometimes I wish I wasn't but that's just who I am and I can't change that. I will be calling my urologist today to see what he says but I didn't take the Elmiron lastnight or this am. I was so uncomfortable yesterday and just didn't want to go through that again today. I am hoping that the pain will be better today. Thanks everyone.

[4realtho]

I also felt more frequency with the elmiron for some reason..I am also allergic to sulfa drugs. Carole have you tried Cystoprotek? I am having good success with that.

[Landish]

Kadi and Tracieg, have you the same reaction with Glucosamine sulfate, Chondroitin sulfate and MSM (active sulfur) ? and what kind of test did you take to know that you are allergic to sulfa?

I am asking because I also had problem when I tried the Elmiron and I also have problem with glucosamine,chondroitin and msm. I would like to know what test I can do to be sure.

[kadi]

I had trouble with Cystoprotek - gave me a migraine, vomiting & more bladder pain. But, I found out in allergy testing that I'm very allergic to fish & shellfish and cystoprotek has that in it. I've not tried glucosamine or chondroitin or msm - so don't know about those.
Sorry, wish I had something helpful on this one

[carole]

tracieg no I have not tried Cystoprotek. Even though I've had IC for 2 years I have tried very little. I've gotten by with the diet and Enablex up to now. The Elmiron was my first try at anything else. I will see what the Uro suggests from here but I'd like to try the Uracyst.

[Landish]

I had trouble with Cystoprotek - gave me a migraine, vomiting & more bladder pain. But, I found out in allergy testing that I'm very allergic to fish & shellfish and cystoprotek has that in it. I've not tried glucosamine or chondroitin or msm - so don't know about those.
Sorry, wish I had something helpful on this one

Kadi I also had pain with Cystoproteck and I am not allergic to shelfish but maybe I had pain because it has Glucosamine sulfate and Chondroitin sulfate in.

[cmclien]

Kadi and Tracieg, have you the same reaction with Glucosamine sulfate, Chondroitin sulfate and MSM (active sulfur) ? and what kind of test did you take to know that you are allergic to sulfa?

I am asking because I also had problem when I tried the Elmiron and I also have problem with glucosamine,chondroitin and msm. I would like to know what test I can do to be sure.

This is very interesting! I recently bought a supplement with glucosamine, chondroitin and MSM and each time I took it I had burning, which I never usually have. I haven't tried it again but it must be the MSM?? I do take cystoprotek but maybe should cut it out for a few days and see how I feel. I am taking elmiron but haven't noticed anything bad yet and I too am allergic to sulpha (I developed hives the last time I was given it for an infection).

[Landish]

Unfortunately the only way to find out is taking it one by one.

[saptree]

I had an awful time with Elmiron both times I tried it. 5 yrs ago I took it for a year and my baseline, daily pain level was much higher. I felt so much better after stopping it. I just tried it again a month ago and I was in pain the whole 7 days I was on it. Once again, after quitting I felt much better. I suppose it helped to put the pain in perspective.
FYI, I am not allergic to sulfa drugs.