IC Frequency

[MinnieK]

Hello All,

I'm new to the website and it has been a God sent for me.
I've had IC for years but was in & out of remission. My uro
gave me detrol,vescare, sanctura etc. nothing worked. He
moved away without warning. I had to fine another uro. 2 1/2
months ago my new uro put me on Elmiron 100mg 2x daily enablex
7.5 MG 1 x daily. Maybe out of a full day I can find 3 to 4 hrs of relief
from urge frequency. I have very little pain with my IC
I am so miserable I can't stay out of the bathroom. Each time
that I go, before I can get back to what I was doing I have to
go right back. Sometimes I go more than 20 to 30 times a day
and every hour on hour at night. the enablex has help some
but It is still not working well. He finally started the PTNS last
Thursday. Someone told me that this probably wouldn't help
me because I don't have the pain just the frequency. Can anyone
tell me what kind of meds I need to ask my urologist so that I
can stay out of the bathroom day and get some sleep at night.

Thanks for any advice.

[Briza]

:hi: and welcome!
Sorry you're suffering! Two self help things that you can do that may help immensely with your symptoms is to follow the IC diet and drink lots of bottled water...spring or distilled water seem to be best. I know it may seem weird to drink more water to reduce frequency, but it really does help a lot of us because it keeps the urine diluted and therefore less irritating to the bladder:)
One med that has helped me the best for my frequency and nocturia and sleeping thru the night, and helps mahy others as well, is low dose Elavil. I take 10 mg around dinnertime with great results. I felt results within the first few days of taking it. Some patients report feeling relief the very first night. So that is something you could bring up with your dr.; it is one of the commonly rxd meds for IC and many find relief from it for the frequency, urgency, nocturia, and sometimes pain, that IC causes.
Best wishes, hope you find something that helps soon,Bri:)

[Ratchada]

Like you, my problem is mostly urgency and frequency and I have been having a bad time these past few weeks because I had a UTI. Here are some suggestions. ProsedDS 4 times a day makes a big difference. I also started a very low dose of Elavil but have not seen any improvement (except that it helps with sleep). I take hydroyxzine at night which also helps with sleep. The last thing to try are instillations - they have helped me in the past. I drink lots of Evian water and am careful to the point of being neurotic about what I eat. Finally, when I am having terrible frequency my doctor has me take Urocit K twice a day which reduces the acidity of the the urine. All these things together have helped - it takes a pharmaceutical village and lots of effort to get things under control but things can calm down. I have often said I would prefer pain rather than the frequency but having had pain from the UTI I am not so sure. I can empathize with how frantic you are feeling - There are days (like this morning) when I thought i would totally lose it but then the ProsedDS kicked in and things are better. Good Luck. Ratchada

[elamar]

this medication in combination with utira-c (generic form of urelle) helped finally get rid of that constant urge for me. I had to start with high doses of ditropan (like 4 a day) and then was able to wean back to one per night. I haven't taken it now for months. I keep utira-c on hand when the urge might creep up a bit for whatever reason. Ditropan works different than over active bladder meds. The biggest problem is that is did cause very dry mouth and can cause constipation since it stops spasms. You may want to consider something like miralax while using ditropan if you choose to. It took a good two weeks at high doses to finally get some results. I hope this works for you if you choose to try it. Good luck to you.

[MinnieK]

Thanks a lot, I'll ask my uro and see if he will give me
this med.Thanks

[lisabar36]

Hi and :welcome: I am sorry to hear about your freuqnecy, I do know how miserable that can make you. I have been on Elmiron since September and a few months ago I noticed it was starting to work and now its working GREAT for me. That along with Elavil and Atarax has cut my frequency in half. It took quite a while for the elmiron to work, but I have to say it is really working for me now. I was on 25mg of Elavil and I was retaining and once they cut me back to 10mg, I noticed a big improvement also but we are all so different in what works. Hang in there, Elmiron can take quite some time to work. I know the feeling of urinating and no sooner I have to go again, and its draining. Maybe talk with your doctor about Elavil and Atarax. Keep us posted. :) Lisa