newly diagnosed

[RobinD]

Last month I was diagnosed with IC after 5 years of suffering and no answers. I believe I have a mild to moderate case judging from what I have read about others afflicted with this. I am taking Elmiron twice a day and Hydroxyzine at bedtime. I have just been taking these for a month or so. I haven't been feeling well the last few days after thinking I was getting better. Anyway, it is nice to see so many of you with great ideas.

My questions:
Does Elmiron cause weight gain?
Some have mentioned watching the foods I eat?
Any other suggestions as I now begin the road to recovery!

[meme]

Welcome. Glad you found us. I've been on Elmiron for almost a year now and have seen a lot of improvements in the way I feel. It didn't cause any weight gain for me that I noticed, some have had it cause hair loss, but I haven't had that either. What really has helped me with the Elmiron is taking Elavil with it and sticking to the IC diet. I have a lot of really good days now, some completely pain free! The IC diet seems really strick, but once you figure out the things that trigger your flares, (mine are tomatoe products, caffine, and chocolate, and citrus) it gets a little easier. There's a place on the main page that will give you the basics of the diet. Good luck! Hope you start to feel better soon.

[RobinD]

Thanks for answering me. This is the first time I have used a forum to talk to anyone, so I am learning as I go. Anyway,,, what is Elavil? and what does it do? Glad to hear you are doing good on the Elmiron and hopefully it will help me. It seemed to help the first few weeks but I am not feeling very good again.


I will definitly check out the diet and see if I can notice what triggers my attacks.

[kadi]

Hi Robin,
If you go to the very top of this page you will find a link to the Patient Handbook. It is filled with articles you will find very helpful in getting well! The Diet & IC section is especially important to read.

Elavil is a tricyclic antidepressant often prescribed for IC because it lowers frequency of urination, enables sleep, and reduces pain. It is usually started at doses much lower than is given for antidepression use, such as 10 or 20 mg and then gradually increased to the dose where you find relief and minimal side effects. It is one of the mainstays of IC treatment and has helped me very much. Definitely monitor your weight & appetite on it, it does cause appetite increase in many patients, so stay aware of how much you are eating.

Welcome to the ICN :hi:

[amartaingirl]

If you haven't been feeling well the past few days...it's just a flare.
and it will pass.

If its frequency thats causing the problem.
I find luck with Lots of Water & AZO.

I think I am like you too...a moderate case. I don't have too much pain,
my chief complaint is frequency/burning.

[RobinD]

Thanks again for all the suggestions. The pain is what is the worst but I started back on Pyridium 3x a day. Sometimes that helps.

Questions about the diet...
How long after eating should it affect me? W/in the hour, day etc? I have been eating whatever I want but once I start watching my diet, I was wondering how to determine if it was something I have eaten causing the pain. I haven't seen much info on this,, just what to eat and not eat.

[Curly]

I think I am like you too...a moderate case. I don't have too much pain,
my chief complaint is frequency/burning.

I don't have pain either just the feeling like I gotta pee all the time. Any advice on this?

[amartaingirl]

dont eat any peanuts, and drink a gallon of water.
pee for 4 hours...
then im usually ok

you may want to try the aloe vera pills..by desertharvest.com
my uro gave me samples.

they seem to lessen both the Length & severity of my flares

in combination w/ elmiron & elavil
:)

[RobinD]

I was glad to hear that I should be drinking water. I wasn't sure if that was a bad or good thing to do since all I do is pee and feel like I need to pee.

Question for Amartain---what did you mean when you said "I find luck with water and AZO" What is AZO? (Remember I am new to all this lingo)

[SharonA]

I'm not Amartian but...Azo is an over the counter (OTC) analgesic for the bladder. It helps with the burning and that gotta go feeling. But remember to wear pantie shields. It dyes your urine orange and can stain your panties this not so beautiful neon orange color.

:welcome: to the ICN

[RobinD]

Thanks for the info. I keep learning more about different things to help with the flares from all of you.

Any books that are especially helpful? I just bought the book "The IC Survival Guide" Not much else out there that I could find. I am going to subscribe to the IC Optimist too.

[stacey79]

This site is incredibly helpful as is Moldwin's IC Survival Guide.

As far as diet goes, we each tend to have different reaction times to different foods. I know that's not what you want to hear! Some things I feel within 30 minutes. Others it takes a couple of hours. One of the best things is to do an elimination diet. You basically eliminate all potentially risky foods, keep a journal of what you eat and your symptoms. Then you slowly introduce food back into your diet and see how your symptoms are. It takes a couple of months and kind of stinks, but the benefits outweigh the misery! I have a journal in a Word document that I used if you'd like it.

And for the pressure feeling (always feeling like you have to go), that's my biggest symptom, too. I've found that heat works really well. I hang out with my heating pad a lot. Pyridium (prescription) or Uristat (over-the-counter version) can help, but seem to help me mostly when I have a urinary tract infection. For me, Ditropan XL, also helped my pressure. I take 15 mg a day. It (along with Detrol and Vesicare) works as sort of a muscle relaxer for the bladder. They are designed for people with overactive bladder, but they tend to help many of us, too.

You will also find that IC treatment is sort of hit and miss. It is certainly possible to find the right combination of medicines and self-help therapies, but it can take a little time. For example, I tried Detrol and it didn't help at all. Switching to Ditropan really helped. Right now I'm down to 100 mg Elmiron a day and the 15 mg Ditropan XL.

Welcome to the boards! :welcome:

[RobinD]

Thanks Stacy for all the info. I am just plugging along trying to get all the info I can. Your info really helped.

[stacey79]

No problem. These boards have helped me a ton. You're more than welcome to e-mail or PM me any time. I remember the early days and how confusing and overwhelming things seemed.