well guess it's my turn..

[Matt007b]

Hello, names Matthew 30, from Salt Lake City,

I'm a high school teacher/instructor/airline pilot wannabe.. had around 300 hours of flight time about to take a flight instructor checkride when I got a UTI (never had those before). After a negative urine culture my doctor prescribed flagyl (never had that either) and we think I had a severe allergic reaction to it because I spent 2 nights in the ER room and have been messed up since :rant:

Anyway long story short, after spending about a year or so with mass tests (ct scans/colonoscopy/blood work ect ect hida scan..gallbladder removal last august) and taking in fiber like a madman with a GI specialist who was convinced it was all IBS, I went to a urologist after we noticed my prostate was a tiny bit irritated..had catscans and a cystoscope and they noticed some small irritation on the wall but no ulcers. They're pretty sure it's IC but not confirmed.

So yesterday I started my $288 month supply of Elmiron..i've talked to an airmen medical doctor and it sounds like *IF* my symptoms get under control the FAA will allow me to get my medical back again. But if they don't.. then..yeah so much for that career idea (and a $10K student loan wasted). I'm praying i'm one of the lucky ones that beats this into remission.

I love to fly.. I teach in the aviation field in a simulator and I hope alls not lost. It is weird though.. I don't have to use the restroom a million times a day like others, I just have lower left sided bladder pain that goes up the left urinary tract to my kidney. I deal with pain and inflammation 24/7 up and down my left side, and sometimes minor nausea to heavy nausea/sweaty palms but there's isn't an infection so I have weird symptoms but after a soda i'm ROYALLY sick so I think i'm on the right path finally and i'm following the diet very closely.

I'll be posting questions and hello's (like i'm thinking of buying drugs online from like canada, looking into drug assistance programs..I don't have insurance and $300 pills are a killer on top of $100 visits to the urologist..) also i'll be posting around in the mens section I guess..and trading hellos and ideas.

sorry long post but just wanted to say hello and hope we all get better because i'm like mr. antisocial/can't fly at the moment/life sucks. I hope it get's better! My goal was to be an airline pilot/find a cute girl and get married... hopefully it's not all lost.

[some_guy]

Hey Matt,

Sorry you had to find this place but if you have ic then you were lucky to find it. I'm relatively new but even before I joined I found so much helpful info here, even my doctor comes here to learn more.

On your question about the expense of Elmiron yeah it's ridiculous here in the states - I paid $360.00 for 30 day supply then found it in Canada for $140.00 and it is the same manufacturer, same med I can PM the link to you if you like. The only real drawback is I had to order it early because it's sent regular international mail so it takes a week or so.

I'm in the same boat with prescription costs, I have insurance but it's the small business special and does not cover prescriptions.

Best of luck, sounds like you are determined and will do well in keeping it down and out of your way.

[Matt007b]

Hey IC guy - :)

(caught me right before I logged off) yeah sadly i'm borderline disabled right now, fighting through it.. teaching high school students is stressfull enough but dealing with nausea just is so difficult! ugh! IF it was only the pain I could manage but sometimes I have to lie down and hold on through the nausea..hopefully it'll get better with this elmiron here in a month or so.

But anyway, yeah i've been lurking the past few days for info and this site is a blessing with information - the doctor gave me a 6 day course on steriods just to see what happens and sure enough the swelling and nausea almost went to zero.. drank a root beer and it had ZERO effect on me, like all the sudden I was normal.. then the meds ran out and tried that again and WOW inflammation..nausea..sooo ill..

So yeah - Elmiron is extremely expensive and I google/shopped some prices just to get an idea what the price range is and why canada has it for 1/2 price (??) who knows. If you have that link i'd love to get it, if you've used them before then it must be trustworthy - it's probably the same one I was looking at because I was planning on doing the canadian route, because even at costco, paying $300 is .. waaaay too much for me to pay :( I can handle near 150-200..but $300? wow. Someone make a generic for this thing ASAP! (wish)

anyway thanks :woohoo:

[traceann]

Hello Matt and welcome to the gang! Sorry we meet under such lousy circumstances though, ugh. You have found a great place for support, information and lots of understanding! Keep your chin up, the worst time is always around diagnosis - it was for me and it is for many!!! It does and can get better, so think positive ;)

Hugs,
Tracey

[SharonA]

:hi: Matthew...:welcome: to the ICN...

Okay...I need to warn you about buying drugs online. It can be dangerous. Even though they say it is the same as what we get here in the States, what would keep them from not telling the truth about that and substituting sugar for the real med? Just a warning...

I really am glad you found your way here. There is so much information available on this site. Have you found the IC Diet yet? You can find the link to it at the top of this page. It has helped so many of us. It really is the first line of defense. Take a look at it and try it. You might find that it is exactly what you need to do to relieve many if not all of your symptoms.

Also, take a look in the ICN Shop (you will find the link to it at the top of this page) then click on the link to Alternatives found in the list to your left. There are several products listed that have helped some here.

Again... Welcome!!!

[Matt007b]

Hey Traceann/SharonA

Thanks for the warm welcome :) and thanks for this site.. soon as I read what IC was I'll be honest I felt like driving off a cliff but looks like some of you do manage somewhat a life still..and some completely..well I don't know if beat this is the right word but - it doesn't affect your life a whole lot.

With elmiron being FAA approved on a case by case basis - I *HOPE* and pray it works.

On the canadian route..yeah I agree Shraron i'm a little worried about ordering it online like that.. if it's sealed with the factory sticker (sounds like i'm buying a car ha) then i'd be less worried but your'e right some joker out there could just put sugar pills in them and sell them for a cheap buck.. i'll look into it and hopefully i'll qualify for some prescription drug assistance somehow..

Thanks u2!

[some_guy]

Matt,

I sent you the link by PM.

I agree with Sharon that you have to be careful so you have to check out a place and do some due diligence but in the end there is no guarantee it is all a risk it seems anymore.

The FDA says don't buy from Canada because they don't get to make sure it's safe, but if you look at the recent Heparin recall you'll see that means exactly nothing because they allow drug companies to buy poison from China that passes their tests.

[traceann]

Oh you are very welcome! :) I did really well with Elmiron - I was on Ditropan, Elmiron and Hydroxyzine - and now, well, I have been able to get off all of them ;) Do check out the Handbook - sooooo much info!!! Hydroxyzine (antihistamine Vistaril or Atarax) was to me, the one that really helped me out, now maybe it was a coincidence, lol, but once I started taking that, things seemed to start looking up a bit faster. It can help Elmiron to work, by blocking the histamines that attack the bladder - so Elmiron can do it's thing without all it's work being repeatedly torn down etc. I started sleeping through the night, usually I was up at least 4 times, ugh. And that's when I noticed my frequency start coming down little by little but at a faster pace.

Oh yeah - and the diet was a huge tool for me, huge. It really helped while I was waiting for my meds to kick in, as Elmiron can take 3-6 months to feel some benefits and 6-12 months to feel full benefits, so it's not a quick fix unfortunately. Ugh, there's nothing "quick" with IC, lol. :)

Really though, do keep your chin up, there's so many different med combo's, treatments etc, I am sure you will find your combo that is your magic bullet - just don't give up. Sometimes it's the first try (I was lucky with my med combo) and sometimes it takes a bit of tweaking here and there, but most do find a good one!!!!

Hugs,
Tracey

[Matt007b]

Thanks Tracey :) mucho hugs back at ya

i'll look at that manual..i've never heard of that drug, fact this is sort of sad but I had to really pressure my urologist to put me on this, they put me on those steriods for 6 days as a trial to see what happened and of course finally when I find out my problem I want to attack it ASAP.. and my next visit was a month from now, and my first thought was "NO WAY i'm waiting a month..let's do it NOOW!"..took 3 phone calls and a letter but I'm finally on elmiron (yaa!)

lol..so anyway but i've never heard of Hydroxyzine i'll research into that and maybe ask about that on the follow up..anything to help speed things along i'm for and if there's little risk i'll do it. Thanks for that info! And thanks again everyone (all of ya)

[crkshnks79]

Hey Matt ,

Welcome :hi:! And Im sorry that you feel as horrible as you do right now !! I dont have prescription ins either and the cheapest I have found for Elmiron is at walmart or target at $210 , just figured Id throw that out there for you . I also have all left sided pain as you but unless it gets to my kidneys I dont have nausea .. I hope you find either meds or a diet that helps you and you start feeling better ! Good luck :)

[dg2901]

Those w/o rx coverage---ring the manufacturer and explain your situation. If i'm not mistaken the makers of Elmiron offer assistance.

D

[kuntrygurl78]

:hi: My brother's name is Matt.

Just wanted to say welcome to this site. I just wanted to let you know not to be freaked out by the diet. I think it was what scared me the most. I ended up finding out that just a handful of things cause me pain. But knowing those few things has helped me tremendously. If I stay away from them Im fine; if not then Im not.

There are so many meds and treatments out there. Most people find relief and can go into remission. You are at the hardest part of the disease..the beginning.

[ngazerro]

Hi Matt,

I know things look bad right now, but do know things will get better. Try to keep your spirits up.:smile tee

Nina

[jen74]

Hey Matt.
I am sorry your dealing with this, I know it sucks! I also miss my old self as well. I miss being that very active and fun person I use to be before I got this stupid disease. I am hoping you do not have IC, and maybe just some other irritant and it will go away. I would try the diet thing, maybe that will be enough to kick this thing in the Butt. Good Luck, and hang in there.
Jen

[traceann]

Here's some links to the information I found here in the Patient Handbook that led me to asking my doc for the Hydroxyzine, hope it helps! ;) They are both transcripts from Guest Lectures - sort of "chat" situations etc, so you kinda gotta wade through it a bit, lol!

http://www.ic-network.com/guestlectures/theotranscript.html

http://www.ic-network.com/askthemd/theo0503.html

[dyno]

I also wanted to add my welcome. :welcome:

You have gotten a lot of good advise so far. I also have done well on Hydroxyzine. A word of caution on the Elmiron, it can take 6-9 months for it to kick in and work for some people.

Another suggestion is to search the site on Glucosamine. This is one of the alternatives that people are having good luck on.

As mentioned, diet is HUGE! I wish you good luck and we are here to help in any way we can.

[Mothergoose]

Hi This is to Sharona and anyone else looking at buying meds from Canada.

Thought I would add to the last post about buying from Canada, SharonA warns about buying from Canada.

Firstly: all drug in Canada go through the same approval process as the USA. Often drugs are not approved in Canada until after they have been approved in the US.

Secoundly: lots of people buy in Canada because of our drugs being cheaper, this does not mean they are an inferior drug, in any way shape or form.

Third: anyone anywhere should be careful what they buy on line no matter where it's from. Look up the site you want to buy from.

But for you to say beware you may just be getting sugar. Does that go for buying on line in the USA, I am going to order Preleif from this web site, should I be scare of what I will get get?

Think the answer is no, but not because I am buying from the USA, but because I am buying from a reputable site. So for people wanting to buy their drugs online from Canada to get them cheaper, go for it, just choose a reputable site, chose a drug store that is a chain, look it up on line, do your research as you should before buying anything.

If by some chance you get something that is not right complain right away to consumer affairs, they do not want crooks selling on line.

Another thing I think the Canadian goverment is looking at ways to stop Americans from buying prescrition drug in Canada, they think with the amount of drug being sold to Americans, it is going to cause shortages for Canadians, and is going to drive up the prices for Canadians. I don't think this is going to happen anytime soon but it is being looked at.

As for anything please shop wisely, buy from known companies, drug in Canada are as safe as in the USA.

Sharona I don't disagree with your warning totally people should beware when buying on line, but they should not right off other countries such as Canada because there are some crooks out there. They should just shop wisely.

Mothergoose

[motherof4]

Hi ,Matt I too just wanted to say hello,I'm sorry you are going through this as we all are here but things do get better I promise....:smile tee

[Matt007b]

wow i'm away for one night and i've got a boat load of people to thank :bow:

**first off Lauren thanks for that info, if buying online goes south that will be the next stop walmart/target. I'm surprised my costco in utah charges much more..and get this, they don't accept credit cards only cards with a 4 digit code! :mad: *rip-off* so don't go there if you do everyone. But thanks, yeah my nausea is a killer, I think it reached up to my left kidney..can't sleep at night at all :( but thanks for the info Lauren!

**Thanks for that info dg2901, i'll call elmiron and see what I can figure out.. i'm just a poor part time college instructor :( health insurance..wish I had it.

**Hey Kim, thanks for the welcome :) yeah my diet is basically an IC diet already.. course minus the fruit juices (I'm going to miss orange juice..) but yeah hopefully i'll join the lucky ones. *and good luck on the job search if you're still looking for one

**hey nina/Jen thanks for the boost :) wish I could roll back time 2 years..ugh! What I would do with a healthy body...er..urinary tract system.

**thanks for the links tracey :) reading it now

**hey jolene :) thanks for the welcome and I pray it doesn't take that long ugh.. if it does it does but that would suck. But thank you!

**hey mothergoose - good point, I've bought stuff on ebay from like hong kong..to importing goods from japan.. all done online. There are crooks out there but i'm sure but it works both ways, I agree - it's good to be safe but yeah I think i'm for sure going that route..no way i'm paying double for the same exact thing (or hopefully it is)

**hey motherof4, very nice to meet you :) thanks for the kind words - hopefully they'll find a real powerful drug that will coat the lining and bring us all relief in days not months. :)

Phew there.. how did I do? Thanks everyone!

[motherof4]

Hey,Matt just was wondering if anyone told you about desert harvest aloe it is supposed to put the gag layer back onto your bladder.Alot of people have found help with that also, glucosamine,msm is another one that many people take that helps them.Do as much research as possible and look through alot of threads on here you will get alot of answers.I wish you nothing but better days ahead and hope that you can one day get your pilots liscense don't give up........

[formom]

Hi Matt! That is my 10 month baby's name. Love it!! Welcome and don't get discouraged, it really does get under control eventually when you find the right meds to work for you. Elmiron started working for me in like a month, so hopefully it will for you also. In the beginning and still I took Bladder Q that you can find on this site and I believe it helped and still helps with the Elmiron, but everyone is different (you will hear that alot here). Best of luck to you and keep up with your dream of flying, don't let this crummy disease stop you!!! :angel: Renee'

[traceann]

Phew there.. how did I do? Thanks everyone!

Fabulous, lol! I too highly recommend checking into the plan that the med company that makes Elmiron has for helping people get the medications they need, it can be very helpful!!!!

Hope you're having a great day!

;)

[elitynski]

I read some recent blog entries on Matthew Myspace page and it sounds like he has a Dr. appt on Monday and that he has a bladder inflammation that might be addressed with steroids or surgery. I'm hoping that he has good success with his doc and that the steroid treatement is successful.

[Matt007b]

^thanks elitynski :)

yeah I'm almost positive I don't have IC, diet didn't do anything.. I took elmiron and a few other drugs and about died (it just stayed in my kidneys..) and I only go like once a day and what comes out is..very little.

So yeah they did a trial of prednisone (steroids) for 6 days and for the first 2 days I felt like a million dollars so we'll probably do a long course (who knows how long that is)

but yeah if it fails.. probably surgery (it's just swollen shut, which is causing serious nausea.. I feel like a fish with all the water i'm holding in *blurp*) :( hopefully I won't have a plastic bag attached to me all my life and if I do hopefully some girl out there will look past it.

anyway thanks for checking in on me (I better be careful what I post in my blog LOL didn't think anyone read it.. it's sort of my ventathon..like you i've been sick over a year it gets frustrating, I hope you get fixed elitynski!) :woohoo:

**sorry missed your post formom and traceann my fault! Hope you 2 are doing well these days!