My "Miracle Drug" stopped working.

[graysmom2005]

:confused:
I have Mild IC (for now, knock on wood). IC diet, aloe, and Cystoprotek all helped the symptoms, but as soon as I went on the generic Elavil, it removed my symptoms and I felt like myself again. I'm on 25mg before bed. I was beyond thrilled. I'm also on Elmiron, but just started so no difference yet. I started testing out new foods here and there and was doing great...but after a couple of risky meals last week my symptoms are worse than before! I'm soooo beyond upset that I feel worse but I'm still on my meds. So the Elavil took all my symptoms away at first, and now I'm still on it and in more pain that before. What is going on? Will I ever get relief now? Do I need a dose increase? How many days will the flare continue if I ate a few bad things? I just feel so incredibly let down and concerned that the one thing that did wonders for me doesn't work anymore. HELP!:help:

[AthenasMommy]

Hi there,

I'm sorry you are flaring. After months of doing so well, an unexpected flare can really knock you down (physically and mentally!) I completely understand!

Are you absolutely sure it is an IC flare and not a UTI? The only reason I ask is because if I go through a long period of remission (medical or otherwise) and then out of the blue get a flare, I always secretely HOPE it's a UTI and not IC flaring up! However, I haven't had one of those remissions for a long while now and the flares keep on raging :cussing:

My guess is that if you are really sticking to the diet and you had some risky meals, that is your culprit. Drink lots of water and the flare should pass. Have you done anything new... starting new exercises, hormonal therapy, anything? All those things tremendously affect my IC.

I really hope you get out of this flare soon, and know that you are not alone!

Jessica
AthenasMommy

PM me anytime!:pray:

[graysmom2005]

Hi there! Nope, not a UTI. I think I got too excited with my ability to eat/drink more stuff. I forgot I had IC for a bit because I felt 100%. I had an alcoholic drink, a burger with ketchup, fries with malt vinegar (just a dip) and pizza. Like a dummy! I felt like my Elavil was my shield...guess I was wrong. I figured I'd feel bad for a day or so and go back to feeling great...but it's been days now with no change. I hope I didn't do any long term damage. My aloe vera also ran out at the same time. I JUST got my new bottle. I hope that helps!

[Jereme]

Take a couple of breaths and relax a little bit. IC is often unpredictable, but it generally isn't a progressive disease. There is no evidence that eating, so called forbidden foods will do long term damage. You are new to this and it may take some time to figure out how this disease affects you. IC waxes and wanes. Often without rhyme or reason. You might be having a flare due to some diet issues or you might simply be having a flare since that is how IC is. A uti is also a possibility. It's probably worth getting that checked out.

Also, you had noted that Elavil had solved your problem 100%. If I'm not mistaken you noticed this working right away. Elavil can take up to a month or more to be fully effective. Your feeling good may have nothing to do with the medications that you are taking. This disease can have remissions and flare ups for no reason. It's part of the condition. Sad but true. Don't get me wrong since I'm not saying the medications don't help. The goal of treatment for IC is to manage the condition. Remissions do happen. When they do they can last days, months and sometimes years. However, sometimes the disease can come back as quickly as it left. It is what it is. Don't get too freaked out about that. Flares happen. They also pass. Be patient it might take some time to determine how IC affects you. I think it is a good idea to keep a symptom journal. You can keep track of how you are feeling pain wise, foods eaten and also a voiding log can be helpful. A voiding and symptom log can be very valuable in showing a pattern of symptoms. I've been keeping a log for over two years now and I can tell you there have been many times I thought IC was gone. It always comes back, however. Having some sort of objective evidence that you were doing well helps the mind when things are not going so well. You can tell yourself, I've been through flares in the past and they resolved. This one will too. Good luck. Living with IC is a challenge. However, it can be done. Unfortunately there are no quick or easy solutions.

[Mrs. Peel]

This thread is what I needed to read today. I went to the GP with a mystery flare and the stick test said blood only. (Forgot to ask to have the sample cultured.) I've been working so hard since last May to control my diet and activities, I had forgotten flares can also just happen.

I did get the name of a new Uro in town. Mine does strictly AMA-approved treatment and wasn't even interested in the phenotype study, so I'd like one with a more holistic approach.