Starting Elavil tonight - Interstitial Cystitis Network Support Forum

Poppystock · 08-14-2009, 09:38 AM

My GP agreed to try it. God bless her.

I'm starting at 25 mg a day. That seems a bit high to me, but I am not going to complain!

I would be very interested to hear about others' experiences with Elavil. I do not suffer from frequency, but occasionally burning and bad pelvic pain. Did it help you with pain? Also desperately need to sleep and do need to pull out of this obsessive funk, so...

Thank you,
Emily

Dakota · 08-14-2009, 11:22 AM

Hi Emily
I have been fighting to stay on Elavil for about three months now. I have Sjogren's Syndrome, and it is very drying for me, but so far it is the only thing that has helped my burning pain, so I just put up with that side effect. I am also on the 25 mg a day, but I started it very slowly by cutting them in half. I did this for the first few days to see how I would react, and then I started to take the whole 25 mg, which is really not a high dose. Hopefully it will work for you, and you should notice a difference right away if it's going to work.

Best wishes,
Dakota

KarenAnne · 08-14-2009, 11:30 AM

My urologist started me on 10 mg. & had me titrate it up by 10 mgs. weekly. It really helped me with urgency, frequency, bladder spasms, & night time voiding by 80%. I was very sleepy the first few weeks in the morning, but that subsided. I also took it earlier in the evening & that helped the morning grogginess. I hope you have as much success with it as I've had.

DenySue · 08-14-2009, 02:19 PM

Emily,
My uro started me on 10 mg of Elavil and I noticed an immediate improvement
in my symptoms (urethral spasms, frequency, slight burning). After a couple of months or so I asked to go up to 25 mg because I was getting a few breakthru symptoms, and I have now been on 25mg for maybe 3 months? I feel 90% normal again most of the time. You do have to adjust as it is a little sedative, but that is wonderful for sleeping through the night! I take it at 7-7:30 each night, and now I have no problems with drowsiness in the mornings.
It will increase your appetite some, so watch that, but for me it has been a miracle.
DenySue

Braedley · 08-26-2009, 05:06 AM

I took a couple of years to get the dosage of Elavil right for me, and I am now on 60mg/night in conjunction with a few other meds to assist in pain management..it really does help but I find if I take it too late at night, I am very tired all day..but otherwise it has been worth the struggle to get the right dose for me..

lisabar36 · 08-26-2009, 06:18 AM

Hello, I started on 10mg then went to 20mg and then to 25mg. It helped my vulvodynia alot, also helped me to sleep better and not have to urinate so often at night. I tried going off it and my symptoms came back, so it definitely works for me. I hope it works good for you.

cem · 08-26-2009, 11:41 AM

My gyno just prescribed this for me today.

I'm starting with 25mg, then in a week going to 50mg, then to 75mg.

I'm terrified that it'll cause me to gain weight, but the vulvodynia & IC pain are making it hard to live life every day right now!

Poppystock · 08-26-2009, 11:48 AM

Hey cem (and everyone else),

So far the elavil has been an absolute godsend. I'm sleeping for the first time in weeks, and it has really helped with every day pelvic pain. I'm hoping it continues to work long-term...but right now, am not looking a gift horse in the mouth.

Best of luck!
Emily

cem · 08-26-2009, 12:05 PM

That's good to hear!

I'll hope for the best then, myself! Thanks!

lttlewun · 08-26-2009, 01:15 PM

Yeah!!!

Poppystock, I'm so happy that something has given you some relief! Keep us posted on your progress!!

Cem - I hope it does wonders for you too!

I wonder how Elavil actually works? Can anyone explain this?

lttlewun · 08-26-2009, 01:16 PM

One more ? about Elavil..does it repair the bladder lining like Elmiron?

cem · 08-27-2009, 05:41 AM

Elavil is used as a form of long term pain assistance. It doesn't work like Elmiron at all. It helps "dull" the nerve endings, from what I understand. It doesn't repair any part of the body, but rather helps prevent pain from rearing its ugly head.

VCNJ84 · 08-30-2009, 06:26 AM

I was suffering from crippling pelvic nerve pain and Elavil saved my life.

musiclover · 08-31-2009, 03:59 PM

I just started Elavil again 3 days ago at 10mg/night. When my PFD was bad, I couldn't take it because it was making me cramp up. Now that my pelvic floor is relaxed, after months of PT, the Elavil seems fine for me this time. In 3 days it has reduced my frequency and my bladder and urethral irritation and pain has been reduced. I am weary about increasing my dosage too much because of weight gain, and also because of that spasm effect it has given me in the past. I read an article by an IC doctor last night, and he thought dosage of Elavil isn't as important as the amount of time you are on it. But, it seems that some people on this board do better with increased dosage, so I'm not sure. But the Elavil coupled with the Hydroxyzine make me feel better, although I'm definitely not feeling "normal" yet. Hopefully the Elmiron will kick in eventually, too.

Poppystock · 09-03-2009, 02:53 AM

Hi MusicLover,

Fascinating! What did you mean when you said "I read an article by an IC doctor last night, and he thought dosage of Elavil isn't as important as the amount of time you are on it". Is Elavil more or less effective the longer you're on it? Just curious.

Best,
Emily