Going Off Elavil

[Melissa66]

I'm seriously considering going off Elavil. Firstly because the new manufacturer of the generic Elavil has it formulated so that it aggravates my pain/urgency/frequency. Name brand Elavil is no longer made so that's not an option either. But the real reason for dropping Elavil is that I can't stand the drowsiness anymore. I take 12.5mg at bedtime and the whole next day I'm in a sleepy haze. My wonderful husband is very concerned about all the naps I take because of the drowsiness and he's right to be so. Also, if I go below 12.5mg it has no impact on my pain.

Did anyone else face a difficult decision to drop Elavil: the pain killing benefits vs the constant drowsiness (quality of life)?

[Glenda2]

I am glad you are getting off this medication , it does have the potential to be dangerous.

Only one 25 mg. capsule fried my brain good for Ten days.

I won't touch an anti depressant in my life.

[Melissa66]

Thanks Glenda!

For over 7 years now I've stuck it out and put up with the zombie state that Elavil puts me into. It's no longer worth it and now it's impacting my beloved husband and I won't stand for that.

I'm optimistic that my Uro can fnd a therapy plan for me that gives me good quality of life without a horrendous side effect(s). It'll feel good to sleep naturally and not drug-induced for the first time in 7 years.

[Glenda2]

Note from ICNDonna. Glenda's experience with elavil is very rare. Any medication, herbal or prescription, has the potential for side effects, which is why it is important to work with our physicians and report any possible side effects promptly. Many ICers take elavil with no problem and it can be a huge help with symptoms.

Oh my stars , you were on it 7 Years ?????

The side effects can be mind blowing.

I only had One darn Capsule and I was out of my head for 10 days.

I will never take another Anti-Dep as long as I live , ever again.

Even if research showed it was the New Cure for cancer.

I am glad you made a good choice to go off this Drug.

I realise it does help many people , but look at how many it messes with too.

[vm]

No, it does not turn people into catatonic zombies. Hundreds of people have been through these boards over the years who have taken Elavil and are just fine on it. Yes, it does cause drowsiness for some, and for some it is intense and they need to stop taking it, but for many they adjust just fine to the medication.

For anyone new reading this or for anyone who is considering taking Elavil, please do not let stories of very rare side effects scare you from trying this medication if your doctor feels it may be helpful. For just about ANY medication there will be someone who can share an awful experience. It doesn't mean everyone who tries it will have that reaction. At all.

I am so sorry you had to stop, Melissa. Especially since it was helping with your pain. I wouldn't want to feel sleepy all day every day either. Have you considered any of the other tricyclics?

[dyno]

I want to echo what VM(Kim) said. Many people are helped by this medication and it is part of the combination of medications that help their IC.

[Glenda2]

I am very Happy for those of you that have taken this medication and have been helped by it's use.

And Yes my reaction to it was most likely Rare*

But never the less , it did Happen to ME !!!

I would NOT wish that reaction on any one , ever.

And I have read different posts where some of you ladies have had reactions that were slightly simular.

For ME , it did turn me into a Mess for Ten Days.

All I ask is > Use Caution when taking this medication.

[vm]

Glenda - You mentioned your experience happened in the 80s, I think? Was it prescribed for IC?

[Glenda2]

That event took place in July of 1983 when my Sister fell over Dead at her desk at work of a Heart Attack.

This came out of the clear blue.

I was a stressed out mess because I was the one that got the phone call from her boss saying she told her next door desk partner she felt dizzy and then Boom , face first onto her desk > Dead.

Autopsy showed 3/4th's of her heart Blew from the inside out.

I went to my doctor because I wasn't feeling well , and he asked why I looked upset , and I told him my sister died unexpectantly.
He said > OH You must be depressed , I'm going to put you on 25 mg's of Amitryptaline. One 25 mg capsule at bedtime.

I told him Ok fine I'll try it.

BIG MISTAKE !!!!! (You already know my story about the nightmare)


NO I was not given this for IC.

I have only had IC for about 8 months.
Officially diagnosed on October 12th.


Yes my reaction most likely was > RARE.
But , IT HAPPENED*

[vm]

I don't think anyone here doubts it happened. Not at all. I think our concern is that over the years we have seen brand new people come to the boards and read the scary stories ---- and then those are the stories they remember and think, "I will NEVER try that med or that treatment." It's not that those rare scary things don't happen, it's that we want to make sure that new, very scared people coming to the boards realize that they are in fact rare.

We hate to see anyone miss out on a medication or treatment that might end up being the answer for them. I'm glad I also heard good stories about Elmiron, for instance, in addition to stories about hair falling out and people being absolutely nauseous and ill on it. If I hadn't read the good stories, in addition to the very real "bad" stories, I wouldn't have tried it. If I'd been too scared to give it a chance as my doctor wanted me to - I would have missed out on being in remission for years now. How sad would that be?

I asked if your doctor prescribed it for IC b/c typically the dosage for depression is higher than what is given to IC patients. I just wondered if maybe your dosage was higher in order to treat depression. IC patients usually get a lower dose than what is described for depression.

[Glenda2]

Everyone needs to hear BOTH Side's of the Story for Drugs.

The Good , and The Bad.

Yes the Good storys do give people Hope , but they need to be fully aware there are Negative outcome storys too. Like what Amitryptaline did to me in 83.

This story does NOT mean the same thing will happen to them if they try this drug.
This is just what happened to Me when I tried it !

When I saw my Urologist 2 times in October , NOT Once did he mention any of these drugs as a treatment for IC issue's.
He told me ELMIRON was it !!!!

I saw my doctor the other day and we talked about my IC and she told me she has several IC patients and they are always in her office looking for any kind of pill that might help their IC.

She stated they are being incorrectly perscribed these drugs.
Anti-Dep's , Benzo Class Drugs , Seizure Med's , Narcotic's , and anything else that might work for the pain.

I left her office Speechless because I know many of the Members here take these pills.
She even told me her patients told her to go to the IC Boards on the Net and see just how miserable the women are.
She told me She Knows IC is Painfull for women.
But they don't require those above drugs !
Elmiron is the drug of choice she stated.


I have such Bad reactions to drugs of any kind anyway.

So I try to stay drug free if possible.


For you ladies that want to try > Elavil -aka: Amitryptaline , I wish you great success.
Just be Carefull.

[vm]

Absolutely both good and bad stories should be shared. That's part of what the boards are all about. We want to make sure there is a balance - especially for the newcomer.

I hate that some have such bad side effects from so many medications. It's not fair. At the same time, I'm glad that most doctors who really know IC and are up on the latest research know there are far more treatments available for IC than just Elmiron. So many people would still be living miserably had their doctors not offered any alternatives to Elmiron. It simply does not work for all IC patients. Other treatments have been the answer for so many.

[Glenda2]

I wonder why my Urologist told me Elmiron Oral or Instill's were the ONLY treatment.
(Yes , Darpaz/Urelle too).

Never once did he mention any of these other pills above.

And when my long time Primary care doctor told me the same thing , then what and who am I to believe ?????

Doctor's , or women on the IC Boards ?

I would like to think > Both.

When a doctor tells you those above pills are Not necessary , what am I to think next ???

My primary care doctor was very insistant that these women Get It In Their Head that they need these drugs because other have told them to try it.
She called them > Drug Seekers !


I am a New Commer to this Board too. Been here about 6 weeks.
I see alot of great storys , and I see sad one's too.

I am at a loss what to think or do since the pills for it cause me problems.
I asked the Urologist's Nurse what would happen if I did nothing at all ,
She said Nothing would happen to me at all , other then I'd be in alot of Pain.

IC is dreadfull to live with.

Hopefully some day there will be a Cure all fix for IC.
I'll be first in line.

[ICNDonna]

If your doctor believes there are only two options for IC treatment, your doctor is wrong, wrong, wrong! There are many treatment options available. One of the most common things that help is elavil --- at low doses it can be very helpful in relaxing the bladder spasms that often go with IC. There are also several smooth muscle antispasmodics that are effective. Some ICers even find relief from common, ordinary TUMS. If I were seeing a doctor who wasn't willing to work with me to find relief, I would at least seek a second opinion.

I am closing this thread now and ask that the subject not be reopened.

Donna