Just diagnosed yesterday

[Lilla]

Hi I just got my diagnosis yesterday after having my first symptoms start in February of 07. I was beginning to think I would never find out whats going on! I will be starting some Elmiron soon, and will revisit my uro in early December to see if anything else is needed with that. He is also thinking of amitriptylene and an antihistamine, but didn't want to throw everything on board all at once, which I appreciate. I also have pyridium to use as needed. He also said to call if things get rather nasty, that he could do an instillation. I'm really hoping to avoid that if possible though. I have multiple food allergies so I am on a very modified diet, so the IC diet isn't too big of a stretch for me. I also have heartburn/reflux problems so I avoid anything acid as is. Alot of the diet I was 'accidentally' following just from trial and error. Any words of wisdom or advice on the meds or anything would be greatly appreciated! I am going through quite the emotional roller coaster right now. I am so relieved to have found an answer and so frightened to know there is no cure. Things are so much worse then when they first started so I am really hoping that something will help, there is a definate fear that things will get worse still and continue to as time goes on. Sorry so long! -Lilla

[Lexie]

Hi Lilla -- I'm recently diagnosed too. I had a cysto/hydro on 7/25/08 and was diagnosed with IC. It's a lot to take in at first, but I can say that only one month into my treatment I'm doing so much better!

My doctor recommended bladder instillations. I've had 5 or 6 so far and they appear to be helping. (I say that they "appear" to be helping because I'm on quite a few meds and am not completely sure which ones are helping the most.) I don't have any urethral discomfort, so the catheter isn't painful at all for me. I also take Elmiron orally -- my uro didn't necessarily recommend this but I wanted to cover all my bases. (If you look at my signature it lists all the meds I'm on. I made a decision to be very aggressive in treating my IC -- that's why the list of meds is so long!)

Since it takes so long for Elmiron to kick in, you may want to consider trying an instillation.

I hope you start feeling better soon :)

[SharonA]

Lilla...It really seems like a mixed blessing once you get a definite diagnosis, doesn't it? One one hand, it is good to know exactly what is causing your symptoms. On the other, it is difficult because no one has yet to discoverer a cure. At least now, you and your doctor to go about finding what meds/treatments will be of benefit to you.

It sounds like you have a good doctor. I like the idea of going slow with medications. I also like that he told you to come in sooner than December if you have problems. I have never had an instill (except the DMSO that was done along with the cysto/hydro for diagnosis), but I read that they can help. If you decide to try this, I hope it does help you.

The other things you mentioned are good, also. For me, Elavil (Amitriptyline) was my answer. I have been taking it for years and it really does help me. My doctor began with 10mg, but it can come in as little as a 5mg dose. I noticed a significant decrease in my pain the very next day after the first pill. I now take 25mg every evening.

:):):):):)

[Lilla]

Thank you for your replies. One thing that really does help is knowing that I am not alone and being able to 'talk' with others who are going through this too:) I'm starting the Elmiron tonight, and I'm really nervous about side effects. I do tend to be really sensitive to medication, I'm hoping that wont be the case with this however. I'd hate to be out an option so soon!

[Lexie]

Hi Lilla -- if it is of any comfort at all, I've been taking Elmiron orally for four weeks and have not had a single side effect (knock on wood!). I hope it goes well for you :)

Lexie

[Pam39+]

:angel: You are not alone! You will find this board very helpful. Your doctor sounds like a good one! I was diagnosed 3 years ago and have actually had periods of remission. My mother and 33 year old daugher have also been diagnosed. My list of meds are below. Hope this helps.

Pam

Elmiron
Elavil
Prosed DS (like Pyridiam but supposedly safer long term)
Instills when needed (Were really helpful at the beginning)
Antihistimine
Xanax (when needed)
Vicodan (when needed)
Prelief (with meals)
Prilosec

[Lilla]

Thank you Pam and Lexie, this board and the people on it make this so much easier and less frightening:) I'll be sure to post sometime after the weekend when I have had several days of the meds.

[VickiB]

Lilla,

Sorry you had to 'officially' join us, but we're glad to have you!

My doctor prescriped all 3 meds (Elmiron, amitriptyline & hydroxyzine) at the same time but I chose to start them days apart. I figured if one was going to be a trouble-maker I wanted to know which one it was! No side-effects from any of them outside of the grogginess from the amitriptyline. I guess that's what it's supposed to do, but for me it seemed a bit extreme. I talked to my doctor and we lowered the dose. I did learn from people on this site that it helps to take it earlier in the evening instead of right before bedtime.

It sounds like you have a good doctor!

Vicki

[bjcov]

Lexie, its been a few weeks since you started all your meds and instills. Are you doing ok? Some people get better with Hystos, how about you? I haven't been diagnosed yet, but I know that Coffee and Coke and intercourse are triggers for me. I am only on amitriptyline 50-75mg, I feel like I have pressure and the"gotta go feeling" that came on after having intercourse. And I was doing so good for a while, then all of the sudden boom, its back! I am glad I have this website. I always feel so emotional when a flare happens. Especially if it last for more than a couple days. Then I feel guilty because I am not being the wife,mom that I usually am. My doc wanted to do a PST test but by the time we were gonna do it, I was feeling a little better and didn't want to mess things up! I was a chicken. I hope I can find something that would do the trick. Pretty crappy deal we got huh?

[Lexie]

Hi bjcov --

I am feeling much better, thanks for asking! :) I almost hate to say that out loud because I don't want to jinx myself -- LOL. The hydro did me no good at all -- it probably made my symptoms worse. But, I'm glad that I had it done because now I know exactly what I'm dealing with. I had a lot of inflamation -- over all parts of my bladder (may have been partly due to a yeast infection that got into my bladder via a foley catheter).

I've been getting Elmiron instilations weekly and believe that they're helping a lot. My doctor said I can keep doing them for as long as I want to. I still have no side-effects from taking Elmiron orally (knock on wood!).

I've been strictly following the IC diet as well. Right now, my symtpoms are pretty mild -- my bladder still feels tender, and a little inflamed, but I have no urgency -- can hold it for hours. Other than the slight pressure that the inflamation causes, I'm doing pretty good -- and it's only been about 6 weeks since the hydro. I have hope that I'll continue to improve and hopefully in a few more weeks I'll be doing even better :)

I know that caffeine is a trigger for me -- it's always caused frequency. I've never had painful sex in my life, but haven't had sex since my hydro so I'm not sure how my bladder would react. I think I'll wait until things calm down even more before I make an attempt :)

I'm sorry to hear that you've had a setback. I hope that things get better for you!!!