What medication helped you the most?

[JillC]

Yesterday I was diagnosed with OAB and IC...well I got a RX for elmiron and urelle. Doc said to try elmiron first to see if it helps but I read the precautions and I am very scared. I really am prone to hair loss as it is (really thin and stringy) and I am nervous I would have to wear a wig. I am only 25-Im not ready for this:cussing:

So I am asking if you could only choose one medication that helped the best what would you choose.

I was thinking about asking about an antihistamine or/and Elavil to try first...
on another note I slept the best I have in years yesterday after my cystoscopy. But Im not sure if it was because of the procedure itself or the blue pill they gave me after:confused:

Anyways I guess I just needed reassurement.

[kadi]

Hi Jill,

My number one treatment is the diet. None of my medications work if I'm not following the diet. I eat mostly foods out of the left hand column, occasionally foods that I've individually tested & are ok out of the middle column. I've eliminated foods that trigger my symptoms. I also read labels to avoid irritating preservatives & additives.
http://www.ic-network.com/handbook/diet.html

Among oral medications: Elavil was by far the most effective for me. On only 10mg, I went from voiding 60x a day down to 15-20x. At 20mg, my daily voids are about 9-15x a day. It helps me sleep & reduced my overall pain greatly.

Among instillations: (Medicines put directly in the bladder) I use Marcaine, Sodium Bicarbonate, Heparin. These have greatly helped reduce the pain, burning & inflammation of IC.

Good luck with your decision making. Hopefully you'll be feeling better soon-

[Roxie2007]

HI! I would say the diet first......try to figure out what's causing flares. Then I would try Freeze Dried Aloe Vera in place of Elmiron......see how that works for ya. It coats the bladder and helps rebuild it like Elmiron does...but naturally. You can buy it from this website, the Desert Harvest brand. I would also ask your dr. for a prescription of Elavil. Elavil calms the bladder. It helps with pain, urgency and frequency. Hope you get all figured out for you......and it helps your pain.

[Briza]

Even though I'm not as diet sensitive as others, I do know my trigger foods, so I will also have to say diet.

As for all of my other meds, each one treats a different symptom, so I wouldn't want to do without any of them, but if you were twisting my arm to make me choose, I would have to say my pain meds and pyridium....they help both my IC and vulvodynia and VV symptoms.

Elavil coming in a close third, it works fast for me and cuts my frequency from 30-40 times a day to just 10-15 and helps me sleep through the night. It also helps others with pain. I only take it as needed now...usually during flares is when I have F & U. Most days now I have mild-mod bladder pain and burning and vulvodynia symptoms, still have to go 15 times a day, which might seem a lot for someone without IC, but is ok for me.

I do have days without any symptoms...today's a lucky day:)

[JillC]

Thanks ladies :)

Im sorry if this is a dumb question but....I read the IC foods list and what is the difference between evian and bottled water? it says bottled water is Maybe OK but evian is a better choice LOL


also anyone care to explain to me how glucosamine helps IC? Thanks a bunch!!

[kadi]

Hi Jill,
Some patients notice a difference between different waters based on their ph (acidity) or if minerals have been added. For me, Evian & Dasani bother my IC, but Arrowhead, Crystal Geyser, & Aquafina are fine. For other patients, they're fine with Evian, but not the others. And for some IC patients, they're not sensitive to the differences in waters at all. It's one of those try-for-yourself kind of things.

I'm not sure about the glucosamine. Hopefully someone else will come along soon & answer that one:)

[leelee88]

I think I would have to say the IC diet first, and then Elavil.. Even though I cant take it anymore due to weight gain it is the medicine that helped my IC pain the most..

Ronda

[Briza]

Jill, there was a thread going about glucosamine in the success stories or remission forum, can't remember if those are 2 different forums or one. Anyway, I THINK it was started by ICN member trying2cope, someone correct me if I'm wrong on any of this, but there were a lot of posts about success and people's experiences with glucosamine in that thread.

Everyone where I live drinks some form of bottled water...the tap water has so much chlorine in it you can smell it. I sometimes fill up my 5 gallon bottles with reverse osmosis water, other times buy it by the bottle, and haven't noticed any problems with any brand. Not too many report water being a trigger, but for some it is.

[born2swim]

The thing about Elmiron, it is supposd to help rebuild your bladder lining. So... if that happens, you should feel better Now... not everyone gets help with Elmiron. Yes alopecia could happen, but not for most of us. It is reversible if it does.

Do whatever you are comfortable with. I couldn't take Elavil, so I'm on Cymbalta and Neurontin. I would say the best med I am on is Atarax. I take it before bed and thank God I can sleep through the night (or only wake up once on it). That is tremendously better than waking up every 30 minutes to pee (on a good night).

Good luck! When I met my IC doctor, they put me on Elmiron, Elavil, and Atarax as the standard combo then modified it from there.

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[amanda8]

hi Jilll, i recently was diagnosed with IC because my symptoms are frequency/urgency they also started me on OAB medicine and urelle which didnot help, then they tried me on elmiron i am 26 so i was also wiery about the hair loss and elavil, the elmiron gave me horrible side effects (direaha) and were expensive so i stopped taking those now i am currently on elavil which helps me sleep, everyone reacts differently but i really didnot agree with the elmiron, do you also have pain or just the frequency?

[colleenco]

I have a mild case that was just diagnosed a couple weeks ago. I wouldn't say I am particularly diet-sensitive. I have only been on my Elavil and Elmiron for a couple wks but I can def say that the Elavil has helped me already. Who knows, maybe the Elmiron has, too, but I can't say yet. I hope to have that as my #1 eventually! The Elavil (10 mg) at night, has helped with the freq/urgency. I used to always have the feeling that I had to go and always felt like I was holding my urine....now I do not get that at all.

[Paula A]

The first medication I took was Detrol LA and it really helped with the urgency and frequency and helped me to sleep. I also take Elimiron and at first I thought it wasn't worth taking and I almost stopped but after about 6 months I started to noticed a difference and I still take it and after two years I am doing so much better. I am not in remission but I sure feel better than I did two years ago.

Paula

[kuntrygurl78]

I would definatley say to try the diet first. You may be one of those who has just a handful of things that you have to stay away from. (like me). It takes a while to figure it out, but it is so worth the trouble.

I stopped taking Elmiron because it was so expensive, and my syptoms are so mild. I take Uristat and Tylenol Go Tabs when needed. I can drink any water except for our water here at home. Its really hard water. I probably wouldnt drink it anyways cause it so hard.

[Annie2]

Diet is extremely important for me. I began to feel better about 2-3 weeks after I started following it carefully. The first med to help me was Detrol LA. Many don't respond to Detrol, but it worked for me. Immediately after starting it I was able to sleep through the night and daytime frequency was drastically reduced (as long as I followed the diet----if I didn't follow it, the meds didn't help much). I later started Elmiron and began to feel better at about the 3 month mark, but it took a full 9 months of taking it to realize the maximum benefits. Elmiron made a big difference, but didn't totally solve the problem so I added Elavil. I continued on this trio of meds for 2 years and was doing very well. Then suddenly I started experiencing hesitancy (not really retention, but trouble getting a stream started). The hesitancy was becoming more and more of a problem so I saw my uro. I suspected, after 2 yrs on Elmiron, it was doing an adequate job and the Detrol LA was overkill and causing hesitancy since the Elmiron had coated my bladder and my frequency was close to normal. My uro agreed that could be what was happening and had me try stopping the Detrol LA. I haven't taken Detrol since that day, my hesitancy disappeared and my frequency did not go up one bit.

To pick one med I could not do without NOW would be misleading. First, of course, was diet. But of the meds that worked for me, Detrol was key to getting me started on the right path until the Elmiron really had sufficient time to kick in and do it's job. Now my most important IC meds are Elmiron and Elavil. Two years ago I developed ulcerative colitis on top of my IC and the two disorders kicked off severe PFD. So I still need the Elavil to help with spasms and pain from the PFD. I am still fighting to find the right meds and treatments to help my colitis. When it flares, it does effect my bladder. Since Elmiron can cause digestive system problems, I tried reducing my dosage to see if that would help the colitis. It helped a little, but after a couple of months on a low dosage my bladder symptoms started increasing. Now I'm back to standard Elmiron dosage and am praying my colitis won't force me to have to give it up. For IC, Elmiron is now the key med for me.

[Claredale]

Diet and my sleeping meds. I am currently on that one that is advertised with Abe and the groundhog. As long as I get my sleep during the night I do pretty well during the day with my pain. I still wake up a few times in pain, but lately I have been able to half my Loratab since I am on B & O suppositories. My doctor feels that I am on the upswing for now and we are trying to keep me that way. I know that I am in a better place than I have been in a long time.

[SharonA]

Jill...

An answer to your water question...I make sure the label reads "Natural Spring Water" and lists it as the only ingredient.

I also am not very diet sensitive, but over time, I did find out what does cause me a lot of problems...Citrus. Therefore, I stay away from it as much as possible. It is very important that you find out what are your food/drink triggers.

Elavil 25mg has been the saving factor for me as far as medications are concerned. I tried Detrol and then Ditropan, but all they did was cause retention.

[L. Thomas]

I am not food sensitive. I use rescue instillations at home.