Hi again.

[Jocotter]

I used to come here occasionally in the past,when first diagnosed. After taking Elmiron for a long time, I was only having pain about 4-5 days a month and the pain I had was controlled with heating pad and urispas, with an occasional pyridium.

However, about a month ago, it started hurting alot daily. I am getting discouraged. I can't seem to get it under control and it hurts all the time. I've had to take hydrocodone every once in awhile for pain when it's really bad.

Are there any symptoms that would tell me if it maybe was a UTI, instead of IC alone? Thanks, I also take Amitriptiline 20 mg at night.

[Jeanne D.]

Cloudy urine or foul smelling urine can be two early indicators of a UTI. Sometimes a fever can be present. When in doubt, ask your MD to do a urine culture and sensitivity. This test will diagnose infecton if it is present.

Jeanne

[ICNDonna]

I do think you should be checked to be sure you don't have infection. Sometimes it's difficult to tell the difference between and IC flare and a UTI.

Sending healing thoughts,
Donna

[Jocotter]

Thanks to you both. I will see if I can go in tomorrow and give a specimen. I'll let you know. Thanks for answering. :)

[liznazz]

I've been going through something similar: I've been on elmiron for 5 months now, and feeling better--last weekend all my pain and pressure came back. I thought for sure I had a UTI; I actually cried when the results came back negative. This is the first major flare I've experienced. It was hard for me to tell the difference because my symptoms for a UTI and this flare are very similar. For me, it was only differentiated through a urine culture. Hang in there. Liz

[rumbat]

Oohhhh, I am so sorry to hear you are not feeling well. It seems with IC flares come & go, which is no fun. I am currently in a 2 mo. flare, but find I have more good days when I watch what I eat (I also take Prelief before meals).

Best of luck, and I do know it takes a while for the Elmiron to work (I’ve been taking it for 3 mos. and holding my breath for it to start helping
:) )

[Jocotter]

I've been on Elmiron for maybe 2 years and it helped make this tolerable on most days. I am used to having a flare for about 2-5 days a month, but not terribly severe. Even with Elmiron, an uncomfortable feeling is usualy there, just not enough for pain pills

So like you, Liz, I have been upset to have this go on for a month or more. :headbang: And I've been upset for it to be extra painful, so that I sit most of the night and sleep with a heating pad, take pain pills alot, etc. I went in this morning and they did the cathater collection and said that the initial screen didn't show infection (I also wanted to cry!), but that sometimes when they send it off for a culture, they will find something.

Thanks for all your good thoughts. I know you guys know what I'm feeling and that's a big help. Most people I know are sypathetic, but don't understand how awful this is.

I guess one good thing is that it took me 2 years and lots of tears to find out what I had. But when 2 aquaintences of mine told me what sypmtoms they were having, and the doctors couldn't figure it out, I was able to send them in the right direction to my doctor. They didn't suffer nearly as long and are doing much better.

Why don't family doctors know about this???

[vm]

It's a good reason to get info out to our local docs. I have done it with two, but only two.... I need to get out there and do it with more. :(

I remember your name from before. It's good to see you again, but really sorry to hear about the flare. Does your doc have you on any other meds in addition to Elmiron? I am on Elmiron, but I have 3 other meds I have to take to be relatively symtpom free. Just a thought. :)

[rumbat]

Its horrible how long most of us go with no diagnosis. I have little faith in the medical community any more. After 5 mos. of the run around from my primary care physician, my fiancé found out about IC through his own Internet research. Thank goodness! I referred myself to a urologist, and sure enough, I did have IC. I know I’m fortunate, some go years with no diagnosis!

Due to circumstance I had to go back to my primary Dr. for my yearly OBGYN visit and told her I had IC. She had these lame excuses as to why she didn’t give me the right diagnosis (or send me in the right direction – she had sent me to the hospital for an ovarian cyst & then an appendicitis, not to mention the 6 antibiotics she put me on!) She made me think I was crazy!

My only comfort in this ordeal is that perhaps that Dr. will be more quick to diagnose others who may have IC, and not send them through the whirlwind of other “possibilities” as she did to me. Hopefully soon Doc’s will become more aware of IC
:rolleyes:

[Katrina]

Just wanted to welcome you back and say that there are UTI kits you can buy....there available at most pharmacies and at the ICN store ......that is one extra way to tell if it is uti when you don't feel like going to the doc yet. They aren't perfectly accurate but can help. Good luck with elmiron I sincerely hope it helps you a lot!!

:kiss: :kiss:

[Jocotter]

Thanks. I didn't know I could buy a UTI test kit. :) That's great to know.

The way I found out was after my regular doctor couldn't figure out what was going on, she sent me to a kidney doctor who also didn't know, then I went to the ER one night and the ER doc said he bet he knew what it was and told me to tell my family doctor to refer me to a urologist. She was very receptive (and didn't know about IC), but she sent me and I was diagnosed. Now she knows alot about it.

My son-in-law just gradutated from medical school and is in Tacoma WA, starting his med. residency in Family Practice. I think I should sit down with him sometime and tell him about IC, so he can recognize it.

Re meds: I take 2 Elmiron in the AM and 2 more in the PM. I use Prerelief. I take 10-20 mg of Elavil nightly (I used to take more, but gained too much.) My urologist used to have me take Vioxx daily to keep the inflamation down and it did help, but then it started messing up my kidneys and I had to stop it. I used to take Pyridium Plus daily, but had to stop because it made me anemic. I only take it when I have a bad flare. My urologist also has me take Pepcid daily. Yesterday, they said they might start me on something called Urisat K, over the counter. Anyone tried it?
http://www.destinationrx.com/learningcenter/druginfo/info.asp?prodid=00178060001&name=UROCIT%2DK

I have Urispas for light pain and hydrocodone for the worst pain.