New to Forum...LOTS of questions!

[sandipitz]

Hi, my name is Sandi and after the potasium test, I was diagnosed with IC. The Dr sent me home with a lot of info and I've read through it, twice, and then I found this website. I was happy to find a forum so that I could "talk" with others who have this disorder, disease, however it is recognized. I was happy to finally get a diagnosis after YEARS of pain that were erroneously diagnosed a GYN problems or IBS.
I'd like to know what types of medications folks are taking and what level of success they've had with them. Presently, I'm on two and not taking the third prescription the Dr gave me. The side effects are pretty daunting! But then I have a flare-up and I think "I don't care what the side effects are.... I can't stand this pain!!!!" This particular flare-up has been going on for 3 days and I'm exhausted!
I'd really appreciate hearing from someone who has been dealing with this...
I look forward to any/all responses.....
Thanks, sandipitz

[ICNDonna]

I'm just guessing, but if the medication you are afraid to take is Elmiron, you should know that only a very tiny percentage of patients do have side effects --- and if they do have side effects, they disappear fairly quickly when the medication is stopped.

I think it's a good idea to check your hair brush daily for a few days before you take Elmiron so you have an idea of how much hair you are losing without the Elmiron.

Donna

[Dixiefireball]

:hi: and :welcome: to the ICN family I'm sorry you was dx with IC but at least you do have answer to your pain. Please note there is remission it just take the right combo of medicines.
The IC diet can help a lot you find that at www.ic-network.com/handbook you can also read about more treatment op. there also.
since you had that posasium test it could have sent you into a flare or it could be that you gotten a ture UTI from the test.

medicine i take (remember we all are diff)
heprain and marcaine recuse treatments one to four times a day as needed
(i can't take elimron so i do the heparin instead)
klonopin to help me sleep it also relaxs my bladder and keeps my pain medicine in my system longer.
perocets 10.325 for pain.
Uritact DS for bladder spasm.
i also use an ice pack in the summer or an heating pad in the winter to help ease the bladder off.
tums also can help
prelief before eating or drinking something i'm not sure could cause a flare.
if a flare does happen from a food or a drink I have used but don't like to one tsp of baking soda to an eight oz glass of cold water. drink fast its nasty!!

I understand your pain hon we all do we are here to help you
WE DO CARE!!
sending you hugs and prayers
Rhonda

p.s ask all the question you need too. we will do our best to help you.

[VickiB]

Hi Sandi and welcome!

I'm glad you found this site, -it's been a God send for me and I credit it for much of the success I've had in living with IC.

As for meds, I take Elmiron, Amitriptyline and Hydroxyzine, and have been on them for 15 months now. But I have to say the most noticeable & dramatic change in symptoms I've had has been due to changing my diet. If you haven't checked out the IC diet you may find it well worth the time! It can be found in the handbook along with lots of other great information:

http://www.ic-network.com/handbook

Have you been experiencing side effects from the meds your doctor prescribed? I ask because some ICer's have found ways to reduce some of the side effects of certain drugs and you may find help with that here.

Again, welcome! I hope your pain eases soon!

Vicki

[sheryl*]

:welcome: Sanypitz, I am glad you found this site, it trulyis a Gosend to me to, have joined recently myslef, still going thru a dx process, but farily certain its IC from what Uro says. I ahve tryed every over active bladder med and all my me feel worse like :headbang: . I am curretnly doing dmso treatments and they are not working, but am told it could take all 6 trreatments before they work, and I go number 5 thurdsay, but not notice any change for the good, buts thats me, I am sure others have had sucess with it, next stpe for me is the hydro distention, biposy to know what exactly I am dealing with. Preleif does help me some, at least takes the edge off some for me, I do not notice any bad affects form the preielf myslef. I to am hesiatant about the Elimrion, but will double check my thoughts on it, I was told it ahd a antiimmflammoatory in it , and in the last 3 years have tryed at least 10 differtn kinds of antiimmflamatories all of which make me sick, except bextra, but not allowed to take that anymore. So its tyelnol for me, soem of the other meds I am heai=ring posted here I am unfamiliar with and will have to check them out. The amtyrpiline I have heard of, and want to give that a try, if it will get me through the night with out going some 3x an hr, it would be worth it :woohoo: . Alot of this I am still real unfamilar with :hmm: and am seeking :help: just like you are. I know you will find this site a great reesource and a great place to meet others who know what you are going through...Best wishes to sending hug to you :grouphug: ...

[sheryl*]

Rhonda why is it you cannot take Elmiron? saw that noted in you psot, half these meds you al all listing i have not heard of like hydroxyzine, uirtract, there are others to that I have seen posted here and there, I will research them and see.

Sandipitz, I am wondering why guno kept dx you with ibs? i ask becosue I have had alot of trouble myslef with gas, and bloating, some direah, very rarely constipation, but not to often, and i have heard its not uncommon to have have both disorder together the ic and the ibs, so I wasa wodnering what promtoed him to say ibs, did he say why??...

[sandipitz]

Hi...thank you all for your prompt and helpful responses.....
The med regime I was rx'ed is: Elmiron, Hydroxyzine, and Amitriptiline. I'm taking all but the Amitiriptiline.....that was the one I was most worried about side effects......I was/am worried about hair loss!....I just turned fifty and and am having a hard enough time dealing with that let alone hair loss!!!!

Another problem I've encountered it what to have for breakfast....I've been treating myself for lactose intolerance for YEARS but am now wondering if, in fact, it was the IC all along.....anyone else experience this?

I belong to an HMO, so I'm wondering if my PCP diagnosed me wiht IBS just to "shut me up" because I was always in his office complaining of abdominal pain......as much as this hurts, it is SO reassuing to finally have a diagnosis. I've started experimenting with changes in the diet...keeping more consicientious track of foods I eat and what kind of response I get to them later in the week....I'm interested in hearing more about the Pre..... something or other that some people are taking to help ward off pain with "trigger foods".....I'd love to hear more about that......

Again...thank you all so much....I look forward to "speaking" with you again very soon.....have a good nite.... Sandi

[trytosmile]

:welcome: to the group Sandi...

I was diagnosed with IC 7 1/2 years ago. I have a low tolerance to medications so it has been a struggle to find a balance between the good and the bad. What I can take I have to take in very low dosages therefore less effective. Years later and so many treatments and drugs later I have something that helps, could be better but because of my low tolerance I'm at a stand still.

Today I take Hydroxyzine - 50 mg daily, Amitriptyline - 10 mg daily and a new one called Cilantropan - 1 mg daily. The amitriptyline I've been on since Jan 1988. It was originally prescribed for muscle problems sustained from a serious car accident Aug 1987. I take it and the hydroxyzine at night. They knock me out within 1/2 hr of taking. The amitriptyline was a struggle at first. Side effects most predominate are tiredness and dry mouth. I never had a problem with my hair. I' tried a larger dosage but it dehydrated me and caused daily nose bleeds etc. This new drug, Cilantropan, is an anti depressant. I started it just over 3 weeks ago. 1/2 tablet everyother day, too 1/2 tablet everyday too one a day, 20mg. Well the 20mg just about did me in. :dizzy: I went to my doctor after 3 days of the full dosage, something just didn't feel right. As it turned out I was over dosing on the drug, so it has been cut back to 10 mg and so far so good. Knock on wood.

I'm only 40 and have been on disability for 3 years now. No return date in my future. Frustrating as (*&(#*$*#$&. Not working has likely been the largest adjustment for me and to this day I'm still struggling. My life style has change dramatically. Activities are limited.

Review the website recommended. It is a wealth of information. I refer to it daily. To this day I still pull out the diet do's and don'ts when shopping. Always trying new things and there are days taking things out.

Look forward to seeing you on the boards.

[sandipitz]

Hello again.....thanks for your responses yesterday.....again, VERY much appreciated...... I wonder if anyone can tell me about the RX Prelief?
Is that an oral med? Is it taken regularly or just for specific incidents? Is it RX'd by the Dr or Over The Counter?
I had another question.....(phew, you guys sure are patient!) I've been taking 800 mg Ibuprofin and two 200mg Tylenol to help with my pain..... I thought I remember reading that I shouldn't be taking Ibuprofin...any thoughts?
Hope to hear from you all again soon....have a nice evening... Sandi :)

[VickiB]

Hi Sandi,

Prelief is over the counter, though my experience has been it's not always available at drug stores, so may take a bit of searching. Or, you can order it on the net. It is taken orally. I have read of others taking it regularly, but I only take it prior to eating something that I expect to cause a flare. It does work for me.

I take Tylenol (no problem) so can't answer your second question from experience. I do believe I recall hearing others say Ibuprofin can cause IC to flare. Hopefully someone will come along with a more direct answer for you on this one.

Have a good evening!

Vicki

[diane57]

You might just try not taking the ibuprofen for a few days to see if it helps with your symptoms - some people with IC say it really bothers their bladders.

[sandipitz]

Hi....well, that may have explained the constant pain for the past 7 days..
I don't understand it.....the tylenol does nothing to touch the pain but when I take it with the iburprofen, the pain goes away in about 40 minutes....
I have a follow-up appt with my Dr on Friday so I'll be sure to talk to him about it..... I'll also be checking the local pharmacies for Prelief..... thank you so much for all of you help.....now I need to find no acid, decaf, tea!
Have a good evening everyone....Sandi :)