Elmiron at Month 5

[SoCalJen]

On Jan 1, I will have been on Elmiron for 5 months. I'm not certain it's working at all and here is why:

Up until Dec. 9, I wasn't noticing any improvement. I had a few okay days but not many. I was really in a bad place. In order to get through work and finals at school, I got a Rx for vicodin.

After two doses, the most amazing thing happened. For more than two whole weeks, I had a blissful, nearly symptom-free experience. My husband and I even took a short trip to celebrate. It was heaven! I finally remembered who I was. Life seemed more beautiful than ever.

Now, however, the sensation is back. I'm voiding every hour and trudging through my day with this heavy, temperamental feeling in my bladder. The discomfort changes me from a happy, cheerful person into this crying, fearful and preoccupied person. I know don't have to describe it to folks here.

I saw Dr. Parsons during this time and told him about the miraculous effect of the vicodin. He said he still believed it's the Elmiron that's working. Evidently, my taking the viocodin coincided with Elmiron doing it's thing. I stressed that I didn't feel any improvement prior to taking the pain med. Still, he was confident that the Elmiron was working and urged me to stay on it.

If the Elmiron is really working, why would I slip back into nightmare land again? It seems that many people still have flares on the Elmiron. If it's truly coating the bladder, how can this be? The ups and downs of IC really play with the mind, don't they?

Today, I'm considering whether to take another vicodin pill-- the third one I've taken in my lifetime. This has me unbelievably depressed.

I'm posting this because this site has been such a release for me to vent. Also, I learn more from others here than from any other source. I feel like I don't have much to offer others on this site b/c I don't have any successful tips, treatments or words of wisdom to pass along. I regret that. I really do!

[musiclover]

Hi Jen, it's me again!

I've been on Elmiron for a while, but I can still flare very badly if I eat something wrong. Is there anything you could be eating or taking, such as a vitamin supplement, that could be setting you back? Even bread from the bakery can have ascorbic acid in it. That's just an example, something that would set me back in the past.

I'm not sure why you felt so well and now don't. That seems to be the way IC is for some reason. I felt horrible for months and then had my first cystoscopy and for some reason felt almost normal that one day. And so I think there wasn't as much visible inflammation as usual. Because on my next cysto there was. It's unexplainable. I hope you feel better soon.

[Linda May]

Ic

Has your uro ever mentioned DMSO or Rescue treatments?

[ICNDonna]

Sometimes if you can break the pain cycle it really helps. It sounds like the elmiron may be helping --- I suggest you stick with it for a few more months.

Donna

[SoCalJen]

thanks

Hi Ladies,

Thanks for the responses. I appreciate it. I tried one rescue instillation when I was first diagnosed and it did not go well. I decided to wait out the Elmiron rather than roll the dice on another instillation making me feel super uncomfortable for days afterward.

I don't think it's food-related b/c I've been trying to knock it down with baking soda and water to no avail. However, I did have some "try it" foods on my vacation and did really well. Maybe the "try it" foods were pushing it more than I should have and one of them (one glass of merlot) broke the camel's back in a delayed way? Ah, the mystery of the food connection just kills me. I still can't tell you what a food flare is.

I took two more Vicodin and still no dice. My next move is a UTI test strip (I've still never had a UTI). I have had some anxiety about a project at work, the upcoming semester for me, having a friends over tonight and IC too. Maybe it's anxiety-related? The anxiety stuff kind of feeds on itself and I've been researching ways to deal with this. I have a lot to learn about trying to relax and "calm my bladder."

Back to the heating pad... and thanks again.

[katymom]

Elmiron for just a few weeks

I have been on Elmiron for 6 weeks. I had 5 weeks of normal life. Now I am up all hours of the night in pain. I felt so normal for the longest time ever that I let my guard down and had a cup of coffee. I LOVE coffee. I just had a little. It was a social gathering and I am still new to my strict diet. I am not sure if the Elmiron was helping or what, but I am on Elmiron with a flare.
I just wish I could sleep. I promise, no more coffee.

I might be complaining a little but doesnt the strict NO FOOD with Elmiron stink!
I take my Elmiron at 8am can't eat till 9am
No food from 10am to noon. take pill at noon. no food till 1 pm.
cant eat after 6 pm so I can take another pill at 9pm!

I also take prelief, aloe, and peppermint tabs (With food)

[meResque]

katymom, you could ask your doctor if he would be okay with you taking one elmiron in the morning, and two at night or vice versa. Mine has no problem with me doing that, and it makes life much easier. There is no evidence that this will make it any less effective; many on this board do not take a dose during lunchtime.

[Goldfinch]

I'll be the first to agree that Elmiron is a mysterious drug. Not only does it not help everyone, but it helps some of us in varying degrees. Six weeks on Elmiron isn't very long. I started feeling better between 6 weeks and two months, but it took another year before I felt confident in my progress. Even into my second year on Elmiron I had a few flares, and it wasn't always easy to figure out what triggered them. For the first two years I continued to avoid anything I felt was likely to contribute to a flare. My flares were cumulative; a few bites of something might be okay, but not a whole portion. One short glass of white wine was doable, as long as I drank lots of water with it, but if I drank alcohol three nights in a row I could flare.

Yes, the diet can be frustrating. But stay positive, because Elmiron is not a quick fix and the benefits can increase over time. I am now able to eat a lot of foods that I didn't even dare look at a year ago, but I still practice caution when it comes to the biggest offenders. And I try to be realistic about the nature of IC: no one really knows what causes it and there is no permanent cure. If you continue to read many threads here at the ICN you will find very few testimonials for products or treatments that provide instant relief from symptoms. The rule is there is no rule, but most people take more baby steps forward than backwards, and feel better with patience and time.