Very sad

[Dakota]

I am almost beside myself here with feeling sorry for me! I've been on Elavil for two weeks now. This has been so wonderful because for the last three years nothing helped me with bladder and urethral burning. For the first time in three years I actually almost forgot about my bladder while on Elavil. I find I just can't tolerate it because I have Sjogren's Snydrome and it is drying me out so bad that I feel as if my throat is closing up. It also makes my eyes very dry but my main concern is how bad this is for my teeth! I took Elavil many years ago for sleep and some other problems. I had to stop it when I found out about the Sjogrens. Three doctors including my Uro, primary doctor, and Gyn suggested I try it again for IC. Even at the low dose of 10mg I just can't do it. It has been working so well for me and if it wasn't drying me out so bad I would never come off it. So I am stopping it today and I know by tomarrow I will be back in pain again. For some reason this is making me so sad and I feel like I'll never find anything that will work as well as Elavil has.

[Briza]

I wonder if another treatment in the same class of meds would be as helpful to you as Elavil but without the unwanted side effects?? Tofranil is one that comes to mind that I know many IC patients take and get very similar relief like with Elavil, but there are many others to try in the tri-cyclic antidepressant group!! Possibly trying Tofranil or one of the others is something you could discuss wth your dr....I know it really is heartbreaking when we have to stop taking a med that helps our IC symptoms but causes us extreme and unwanted side effects...but sometimes just switching to another med in the same class is possible for getting the same relief, minus the side effects...or at least fewer side effects. Always need to evaluate on your own and with discussion with your drs and pharmacists whether the benefits outweigh the risks as far as side effects....and as goes with IC often it just takes much trial and error to find what works for us with the most benefits and fewest side effects possible! And when you DO find what works for you with few to no side effects, all the time and $$$ spent on trial and error is suddenly worth it! :) So I for one don't think you have reached a dead end as far as the tri-cyclic anti-depressants/Elavil go because there are SO many others out there to try in this class of meds that could give you the same relief without such extreme side effects. Chin up, ok? Hope this helps and please keep us posted. We are here to support you in good times and bad, and everything in between:angel:

[dyno]

I'm sorry you are feeling bad. Don't give up, hopefully working closely with your Drs. you can find a combination of medications and therapies that will work for you. Just because you can't tolerate the Elavil now doesn't mean that you never can or that you can't find something that will work as well or better.

Hang in there, I am sending you a hug.:grouphug:

[Briza]

Lyrica is another med that comes to mind that many with IC take with VERY good results and few side effects....so that is another one you could discuss with your doctor!

[ICNDonna]

If elavil worked, it's possible there is a different antidepressant that might work in a low dose. Don't give up yet.

Warm hugs,
Donna

[leelee88]

I had to quit Elavil also due to side effects..I was switched to Tofranil and had really good results from it.. But I am having even better results from Lyrica..

So there are options out there.. Never give up hope!! (((hugs)))

[purpletomorrow]

Remeron 30 mg at night has worked wonders for my IC, please consider it. Apparently it has fewer side effects at 30 mg than at 15 mg, counterintuitively... it's let me sleep, I only wake up to pee once in the night, maybe twice, but not like the literally 15 or 18 times I used to get up... it has anti histamine effects so it lowers histamine reactions that can anger our bladders... and no dry mouth from it! no dry eyes! Please consider it, it's been a godsend for me. -laura

[bunnykinb]

From 2004 until mid 2008, I was in constant pain with burning and frequency. I thought it would never end. I cried so many times. I was on Elavil, but switched to Tofranil due to some wonderful suggestions. I also started getting office instills last February. I didn't get immediate relief but I can say Thank God that I have been feeling so much better since mid last year. I think it was the combination of home instills and the increased Tofranil. I did instills before without antidepressants, DMSO without relief, antipressants without instills, Urelle alone and no relief. Here I am today feeling normal and running around with my kids. I hope the relief keeps up. That reminds me, I need to do another instill.

Don't give up yet.

[NancyB]

Just wanted you to know there are two medications that are available that will take care of your dry mouth if you decide to stay on Elavil. One is Salagen and the other is Evoxac. Both do the same thing. I use the Evoxac for dry mouth caused by a non-IC related drug side effect. It works great and has no side effects. You take it three times per day.

Hope this information is helpful to you.

NancyB:)

[bunnykinb]

Oh, I don't know the name but there is a mouth rinse and spray that is sold at stores for dry mouth due to medications. It might be "Bio.." something.

[musiclover]

I've read that when all else fails, you can try Trazodone. It's not a tri-cyclic, but it may work. I can't remember where I read that, but I believe it was an interview with a doctor.