Anyone have success with Vesicare or Enablex?

[kristinj]

My uro gave me samples of Vesicare and Enablex both today and told me to try one of them for a week or two to see if it helps. My only problems are urgency and frequency. I took Sanctura for a week with no change. Has anyone had success with either Vesicare or Enablex for frequency?

[Lovetoread]

I tried both. The Enablex did nothing. I took the Vesicare for about 3 years. It did help some, but I still flared, just not as bad. Last fall it stopped helping all together. It isn't a bad place to start, but for me it wasn't the answer.

[kimh]

Hi,
Ironically, my Uro put me on Vesicare a few days ago. I have been on it for 8 days now and I am feeling much much better. My complaints were urgency and frequency also. I have had about 4 dilations, 2 to 3 weeks apart in his office; but they did not help alone. I think the Vesicare is key to my feeling better. My trips to the bathroom have been greatly reduced, down from 24 times to now between 8 and 12 times in a twenty-four hour period. I return to see him this Tues. Mar. 10th. I also take Cysta-Q, use Pre-lief in moderation ,stick to the IC friendly diet, and water is my drink of choice. I may opt for an occasional cup of caffeine free peppermint tea. Hope this gives you some encouragment.:pray:

[kristinj]

Thanks kimh. I am so brand new to all this. What are dilations if you don't mind? I was doubtful about trying the vesicare or enablex but now I am thinking about it. What is Cysta-Q? I do have prelief and I am trying my best to stick to the diet. Do you feel like the vesicare makes you retain urine? I have heard that complaint.

[kimh]

Hi kristinj,
a dilation is a procedure where the uro takes small tubular instruments to streatch the urethra. It is an in-office procedure. I first had it done over 10 years ago following a hysterectomy and bladder tack surgery; thus an unexpected narrowing of the urethra canal causing me to be unable to have good urine flow. I did really well after the initial dilitations till last year and i started having trouble again. They ran every kind of test to rule out bladder cancer, and last year they prescribed the overactive bladder meds, but i would'nt take them. Then a few months ago, when i began getting worse...going up to 24 times in 24 hours; i went back to him, and presented him a log of my bathroom stops along with the amount of water i was consuming. He said you definitely have oab and first gave me detrol la; but later changed me over to vesicare.
Cysta -q is a supplement that is sold here on the ic network. You can click on it and read all about it. At first i didn't think it was helping, but you have to take it a month or longer to finally feel better. Hope this helps.

[kimh]

OH, I ALMOST FORGOT.
NO, I DO NOT THINK THE VESICARE MAKES ME RETAIN URINE. I AM TAKING THE LOWEST POSSIBLE DOSE OF 5MG. WHAT ARE YOU TAKING?:angel:

[kimh]

And again...i do definitely think the vesicare adds to my constipation problem and it does cause me to have a dry mouth, especially at night time. My gyno recommended mira-lax for the constipation and it seems to be helping, after about 3 days being on it. She says it is safe to use with the vesicare. Pre-lief is also a type of antacid and it can also contribute to constipation. That is why i use it very sparringly.

[kristinj]

I haven't started taking it yet, but the samples he gave me are 10mg. Hmmmm. The reason why I don't think I have OAB is because everything I read about it mentions something about urgency and having to get to the bathroom quickly before having an accident. That doesn't happen to me. My symptoms are a feeling of pressure and having to pee all the time. I usually go every hour or so. But right after I go I feel the need to go again. Sometimes I can squeeze a few drops out, sometimes not and the feeling is just there. Sorry if this is too personal, but if you can tell me if your symptoms are similar I would so appreciate it. Can it be OAB without leaking accidents?

[kristinj]

Lovetoread: If you don't mind I would love to know what your symptoms were as well, before you started the vesicare. I am really trying to figure out if OAB meds will help with the pressure and frequency- again, I don't normally have leaking accidents.

[kimh]

Hi kristinj.
My symptoms are exactly as yours. I have never experienced leakage. They are strictly urgency, frequency, then not being able to urinate much, yet the pressure is still there after i have urinated. I have also felt spasms in my bladder and the vesicare has seemed to calm that.

[kristinj]

THANK YOU for your input! I have samples here of both vesicare and enablex, now I just have to decide which one to take. Always decisions.

[Tuckersmom]

I've been taking Enablex (15mgs.) for almost 3 years now. It helps me tremendously.

[kristinj]

Thank you Tuckersmom! I plan to start the Enablex tomorrow. Were your symptoms similar to mine that I listed above in #8? Do you have any side effects? I'll let you all know how it goes.

[Tuckersmom]

Thank you Tuckersmom! I plan to start the Enablex tomorrow. Were your symptoms similar to mine that I listed above in #8? Do you have any side effects? I'll let you all know how it goes.

Kristin,

I've never had bladder accidents as long as I have had IC. It was frequency that I was subscribed the Enablex --- and yes, that feeling of needing to go even after going.

One little trick that many of us have learned to stop that needing to go feeling after you've gone is this: (You may do it one of three ways.)

1. Stay seated on the toilet after you have voided, and slowly count to twenty, then try to void again. Most people can go at least a little bit, and that way you are completely emptying your bladder.

Or

2. Do a couple of Kegels after you have voided, then try to void again.

Or

3. After voiding, stand up, then sit down on the tolilet to see if you can void again.

Hope this helps. (((Hugs)))

[kristinj]

Cathy-
Thanks for those tips about voiding! I have been trying some things like that, but wasn't sure if it was what I was supposed to do. Thanks so much for adding those tips in here- these boards have been a life saver for me. I just took my first Enablex this morning. Do you remember how long it took to see a change? By the way, your little dog is ADORABLE!

[Tuckersmom]

Cathy-
Thanks for those tips about voiding! I have been trying some things like that, but wasn't sure if it was what I was supposed to do. Thanks so much for adding those tips in here- these boards have been a life saver for me. I just took my first Enablex this morning. Do you remember how long it took to see a change? By the way, your little dog is ADORABLE!

Kristin, My Uro prescribed Enablex 15 mgs. to be taken at bedtime. I'm not sure the reasoning behind taking it at night, unless there is a possibility of drowsiness as a side-effect. Within about 2 weeks, I was much improved. I voided more in the mornings, but much less often in the afternoons. In fact, I was only going once every 5 to 7 hours in the afternoons. At my next appointment, my Uro told me to void every three hours in order to keep from irritating the bladder. An irritated bladder will cause more frequent voiding.

I'm not trying to give you the impression that Enablex is a cure-all. Before I started any meds, I had frequency, burning, and the "I need to go feeling" after just having voided. In other words, I always felt like I had a bladder infection.

The OAB medication got me to a place where the IC is now on the back burner instead of ruling every minute of my life.

My uro added Tofranil, 25mgs., twice daily to my regime, but I didn't notice that it made a great deal of difference. However, I continued to take it --- and still do.

At some point I asked my Uro for Atarax, seeing how much it helped others on this board. I take 50 mgs. at bedtime.

There have been times in the last 7 years when my meds have had to be tweaked after having had a bladder infection. For example, the first OAB my Uro put me on was Ditropan XL 10 mgs. at bedtime. That worked for 3 years. Then I got a bladder infection, and the Ditropan was just not helping anymore. That's when my Uro switched me to the Enablex 15 mgs. It got me back on track.

IC is such an individual type of disease, and it can take time to figure out what medication, or combination of meds, is going to help you. Please don't lose heart. There is help, and there is hope, to get your life back, it just doesn't usually happen as quickly as we would want it to.

Thanks for your sweet comment about Tucker. We adopted him from a rescue group when he weighed only 1-1/2 pounds, on March 17th, 5 years ago. Pets add so much joy to life. :-)

[kristinj]

Thanks for the info. I am so glad you mentioned that you take it at bedtime. My doc gave me samples and didn't mention anything about that. I took the 15 mg this morning and I was drowsy and "medicine-head" all day. Granted, I have had very little sleep lately due to this problem, but I felt even more sleepy than usual. I am going to switch to taking it at bedtime. My symptoms are so similar to yours. I feel like I have a UTI all the time. Oh how I wish it was... and I could just take some antibiotics to get rid of it. Thanks for all your help and support. I look forward to the day I can come back here and help support others. :)
Kristin

[MinnieK]

Hello All,

My name is Minnie, I've posted here before although it's been a while.
I have urgency/frequency no pain. My bladder feels irritated most times.
My uro has me on heparin instills once a month, to me doesn't seems to
be working, Oxytrol patch 3.9 mg & Enablex 15 mg which was a life saver
for me when I first started taking it. I can only go 2 to 3 days without a flare.
so this means most times I am in a flare or either retaining. I want to ask my
uro for different med's but I don't know what to ask for, will some one please
chime in and tell me if they have urgency/frequency only what meds do they
take to help. If I could go without a flare for more than a month I would love
that.

Please help
Minnie

[kristinj]

Hi Minnie-

I have the same issues as you. My problems are urgency/frequency but no pain. I take Sanctura XR every day, which is a medication similar to Enablex. I just recently started taking 10mg of Elavil at night which has helped me sleep and I think is helping with the frequency as well. I am happy to report that I can now go between 2-3 hours between bathroom visits! I feel like I am getting my life back.

You didn't mention if you are following the IC diet. I feel that following the diet has probably helped my problems more than anything else. I completely gave up coffee, sodas, tea, and only drink water now.

I also just started taking cystoprotek, which you can order in the ICN store. It is too soon to tell if it is helping, but I hope it will.

Good luck!

Kristin

[MinnieK]

Kristin,

Thanks for the info. If I can remember correctly seems to me that I tried the Sanctura, Ditropan & Dextrol before I was dx with IC and it didn't work. the enablex is about the only thing that I have taken that gives me a little relief. I am so tired of this disease/monster that I don't know what to do. I walk and pray to GOD all day Please help me with this. Haven't tried the Evail, I may ask my doctor about this med on my next appointment. I have changed my diet. I don't drink coffee, sodas, tea, just water with a few drops of lemon juice per my doctor to give the water a different flavor.

Thanks again,
Minnie

[kristinj]

Minnie,
I'm not sure why your doctor told you to put lemon juice in your water. I wouldn't touch lemon with a ten foot pole. Citrus Fruits are extremely acidic and those of us with IC need to stay far away from them. Definitely check out the IC diet and the IC "Cheat list" for the list of okay and not okay foods. I also take a lot of Prelief. You can find it here in the ICN store or at a drug store. It is supposed to take the acid out of foods if you take it before eating.

I only drink water, and I am careful about what kinds of water I drink. I actually bought a PH test kit at my local pet store (the kind used for freshwater fish) and I tested the acidity of many kinds of bottled water as well as my tap water. My kids had fun with it, but I was amazed how different the brands were. I live in CA, and found that Arrowhead or Evian were the most non-acidic brands of water of all that I tried. It is crazy how many things we have to look out for! I eat a very bland diet these days, but I find that it is worth it to feel better.

Good luck-

Kristin

[kristinj]

Here's a link to the ICN diet "cheat sheet."
http://www.ic-network.com/diet/dietcheatsheet.html

[MinnieK]

Kristin

Thanks for the info, I need all the help I can get this is one disease that I truly hate.

Kind regards,
Minnie

[Kieri]

I had been taking Detrol, but didn't see the kind of relief I wanted, so my urologist gave me Enablex. He said there's a "basket full" of options in anti-spasmodic drugs, so he'd keep trying until he found something good for me. I have no leakage, and frequency/urgency is my #1 complaint by far. So far the side effects have been less with Enablex, and it seems a bit better in help with my symptoms, but not sure I've found the right thing yet. They told me to give it about 2 weeks though, so I've got a while to go as today was just my second day.

[MinnieK]

Hi Kieri,
What a pretty name. Thanks for the info. In the past I've tried Ditropan, Detrol, Sanctura, didn't do a thing for me but made my mouth dry. My uro finally put me on Enablex 15 mg., Oxytrol patch 3.9 mg. Heparin instills once a week for the next six weeks. I feel a lot better. Haven't had a flare in seven days and that's good for me, before these med's I could only go maybe 1 or 2 days without my urg/freq flaring up. I am doing good. I have really appreciated these seven days. By the way, I tried Elimiron just made me worst I was on it for 6 or 7 months and had flares all while I was on it.

Again Thanks,
Minnie

[ESKIMO]

You're lucky to be able to try the bladder spasm meds. I'm allergic to Sanctura & many other meds, so it elimanates all those helpful ones. I have frequency & urgency & burning but had to live it. My daily pain levels are a 4.5 on a scale from 0-10. I have faith one day there will be a cure:pray:. I explain my pain as falling onto the bar of your brother's bike. I take Elmiron, Elavil, Atarax, & Propoxyphene. I had my Euretha stretched but it didn't help. I've better results with bladder distention & DMSO treatments. I'm on the IC Diet & stay true to it, other wise you really have it worse & trying to come back takes longer. Each of us are different in our symptoms, I don't let IC get me down, life is about changes nothing ever stays the same. Have a Happy Easter!:bunny:

[MinnieK]

I don't have pain with my IC, only urgency/frequency. I often wonder sometimes if I would give up one for the other if I could. I can only imagine what your pain is like, and I am so sorry. I pray everyday all day that a cure is soon found for IC. Take care, may God bless & Happy Easter.

Kind regards,
Minnie

[Kieri]

Ok so my doc switched me from Enablex (bad stomach reaction) to Vesicare ... I'm not sure it's any better in truth, and I'm thinking about going back to the Enablex and just taking my Zofran with it. I just want to find SOMETHING to stop to "gotta go" feeling and the painful "zingers" up my urethra. Any suggestions or thoughts?

[ronnie27]

I am rare on this forum as i am a male andd have all the symptoms of i.c.
Have done all sorts of awful procedures and tried many drugs which have been useless. i also tried herbal remedies and someone even mentioned drinking baking soda.

A few months ago my doctor put me on 5mg of vesicare and within three weeks the symptoms have literally disappeared. However i find there are a few good rules that help the problem.
firstly, cut down the coffee and tea intake. three cups of coffee is okay.
stay away from tea that has caffeine in it.
stay away from all citrus fruits. Cranberries don't help, they make it worse.
lastly, take the pill at night before you go to sleep. I now have to urinate only once a night. Before taking vesicare i would go every hour.

And lastly again, i do not have shares in the company that makes vesicare, however i think i am just very lucky that the drug works for me. Just remember to give it time to work. As for a dry mouth, i use wrigleys juicy fruit gum- wonderful !

[ICNDonna]

Please don't try any coffee or tea at all if you're having any symptoms. I have found that if I am feeling good, I can have ONE cup of LOW ACID COFFEE, but no more in a day. The diet information in the Patient Handbook is a huge help in learning which foods and drinks are safe.

Donna

[ronnie27]

Hi Donna,

i reckon i owe you an apology as i stated in my posting that i can drink three cups of coffee a day and this could confuse your forum members.

To continue from my previous posting.

For me personally, Vesicare has improved my quality of life a hundred times over. This brings me to the possibility that i do not have I.C, but an "irritable bladder" and nothing else.

I am scheduled for a Cystoscopy with Hydrodistention in September and i am really wondering if i need the procedure as vesicare has been so helpful. Cancer has been ruled out and i reckon i may just be puttting myself through more tests that may or may not confirm ic.

any advice you can give will be most appreciated
thanks
RONNIE
:smile tee:smile tee

[rshawhan]

Hi,
I have been taking vesicare for almost 3 weeks, and I think it is causing me to be anti orgasmic. Has anyone had this trouble?
Thanks,
Claire

[Tinkerbell23]

i am on vesicare. my dr put me on 10mg and i had too much retention and then i cut it in half and its been fine. i have no side effects from it.

[LithEruiel]

I finally got into the free county health clinic today (been waiting six months!!) and they gave me Vesicare 5mg samples. I was taking Ditropan (regular not XL) 5 mg twice a day and it made me have to push to pee. I was ok with it at first because it was making me have to go less, but after a couple months of that all the extra muscle tightness was making be flare and have to go even more. I didn't realize that it was what was flaring me at first and kept taking it for awhile...it was not fun. Eventually I realized and stopped taking it. Then the urgency was terrible so I started taking one a day and it has helped a tiny bit without the pushing/flaring so far. They gave me the Vesicare at the clinic to see if it helped more than the Ditropan. The reason I bring this up is that I'm kinda afraid to start taking my Vesicare samples because I'm afraid it'll tighten my muscles also. Some people on the board have said that OAB meds have made their muscles so tight they couldn't go at all and had to go to the ER and get cathed. They told me at the clinic that Vesicare works in a different way than Ditropan, but I was wondering if anyone had problems with Vesicare making their muscles too tight?

[Stella1609]

I had retention with Detrol and had to stop it, but it was never that bad--as soon as I stopped it, I was able to void normally again.

[Tinkerbell23]

i am on vesicare and it gave me some retention so my dr told me to cut it in half and that helped a lot, i like the versicare.

[LithEruiel]

I just took a half last night and the night before to see what happened. Not having any retention or tightness so far, but I feel like it's not making me tired, but when I am asleep it's making me really out of it. I kinda feel like my muscles are really tired but not quiet sore. It's so weird! Of course it could just be a coincidence, maybe I'm getting a cold or something. Also it's worsening my dry mouth with just a half a pill...grr, I can deal with it though.

[LithEruiel]

well it's my third day on the Vesicare and I've been feeling worse than before...so I asked the pharmacist I work with and she said it can take 2-3 months to see the full effects...grrr.... for anyone that has taken it, how long did it take to work?

[Kieri]

For me, Enablex is wonderful when I'm so miserable i'd rather cut my bladder out than live another day. However, if I take it every day the side effects are too much. Good luck with whatever you try! Vesicare btw did nothing for me except give me kidney spasms. :confused: that was not fun.

[LithEruiel]

Yeah Vesicare (the lowest dose) made me retain urine and made me much worse...it's so frustrating...