Newly Diagnosed

[KGETMAN]

I was just diagnosed last week, I started elmiron. I am having sooo much pain, what is elavil? What do I take for the pain The Dr told me to take elmiron and come back in 3 months.

[kelly McC]

Hi and welcome,
Here is a link to the handbook http://www.ic-network.com/handbook/ it has alot of information. The elmiron can take 6 or months to start working.
Elavil® (amitryptyline) is a tricyclic antidepressant that, in low doses, is effective at relieving chronic pain by interfering with nerve activity. It is commonly prescribed for several chronic pain conditions, including irritable bowel syndrome (IBS) and fibromyalgia, two conditions that many IC patients also have. Its strength as a long-term pain management strategy, an essential part of an IC tool kit, makes it helpful in treating IC. It also may inhibit bladder spasms. I take it @ night it helps me sleep more than anyhting but everyone is different.
Kelly

[Imustpee]

Welcome...do what your dr says..I too am only on Elmiron and no other meds..I did get some Prelief but it seems to give me the runs somewhat..

[LJINSD]

Hi,

Welcome. So sorry to hear you have IC. Elmiron can take awhile to work in some people (6 months- 1year). If you are in pain, you should ask your doctor for some pain medication. Elavil is one medication that could give you pain relief. Take care. :grouphug:

Linda

[shennan]

you have every right to call your doctor back. let him/her know that you are still unwell. i made sure my doctor gave me something. i got norco for pain and valium for spasms and relaxation. there are many meds they can give you for the short-term. please, don't be afraid to call your doctors office and tell him/her you need something. is this doctor a uro? unfortunately, the norco gives me retention and more spasms, so i took darvocet last night. not as strong, but it helped me sleep better and took away the back/bladder pain. some people take antidepressants.

my suggestion always: call your doctor and let him/her or the nurse know that you cannot stand it. you need something for pain for the short-term, at least.

have your doctor look up this web page (ic-network.com) and ichelp.org.
all the web pages (dr. moldwin, most importantly) state that the person should be treated with some sort of medicine to help alleviate the pain/spasms/burning, etc....

well, good luck!! and sorry that you have ic.

:) :) :)

shenna

[SharonA]

:hi: :welcome: So glad you found us. So sorry that you have IC.

Kelly has done a splendid job of describing Elavil. I take 25mg in the evening and have done so for over 2 years. It has helped me a great deal with the pain of IC. :)

[VickiB]

Hi and welcome!

I take elmiron and amitriptyline (elavil). I do believe the amitriptyline has helped me with the pain, and especially with my bladder symptoms waking me up through-out the night. Please speak to your Doctor, because you shouldn't have to live in pain!

The one thing that I can say that has helped me the most is the IC diet. Many of us have been able to greatly reduce the amount of pain we're in just by watching what we eat. If you haven't looked at the diet yet, please do. You may be one of those for whom it makes a world of difference!

I hope you feel better soon!

Vicki

[Katrina]

:hi: :hi: :welcome: to the ICN!
Keep us updated on how you are doing. I am so glad you found us! IC is terrible but we can help you fight it! Let us know if there is anything more we can do for you!

[donutgirl]

Welcome to the boards. I am soooooo sorry you are suffering. I have been having a tough time since my diagnosis the end of May. My first doctor was not very knowledgeable about IC....he told me to take the Elmiron and come back in 6 mos. I thought he had bumped his head or something. The best thing you can do is educate yourself as much as possible and if your doctor is not very versed in IC, you need to find someone that is.....you are going to need something for pain management. Please feel free to pm or email me at any time.

Prayers for some pain relief soon!!!!

DIANE

[Sarojini]

:welcome: I'm sorry I missed your post earlier, but it's been a wild couple of days around here!

Anyway, if you are in pain, you have a right to ask for some method of pain relief. The others are right. While Elmiron is an excellent drug to be on and has helped many (myself included) it takes a long time to kick in and you need something for relief in the meantime. Your first step should be calling your current uro back and explaining your situation. If he will not prescribe anything for pain relief (Elavil, narcotics, muscle relaxants can all help), then check with your primary care doctor if you have one. Sometimes they are willing to manage pain for a while.

If neither option works, it may be time to get a second opinion at another urologist's office -- perhaps they will be able to help more. In the meantime, check out Katrina's list of pain management techniques-- there are a lot of self help strategies on there that can really help listed there (Katrina --- I forgot the link--- can you post it for kgetman?? :) )

Good luck, and welcome to the family :grouphug:

[ad8123]

Hello, Welcome. Sorry about the Ic but Glad you came here! I think you should call your MD back, if you are in pain you deserve to be treated. Everyone is right there is a lot they can do to help the pain, pain meds can be given temperarely but you should definitly hace them if in pain. That was the first thing my uro gave me! Elavil and other trycylics are a good start to a way to treat pain without being a pain med. Valium worked great for me when I had spasms. In my experience you have to be persistant with the Md's at first IC is hard to treat and you have to really push some Md's for help with pain. I now, 1year after diagnoses, see a pain managment MD because the pain is the one thing we can not get under control for me (i did not respond to pain meds) so I am trying other alternatives. I hope your Md listens to you and that you are brave enough to speak out, you have rights as a person in pain, never forget that and check out the info on the site it is great! Good luck and Welcome.
Angela

[KGETMAN]

THANKS for all the replies.

I saw my Dr yesterday. I had an infection and he gave me an antibioic and some pain meds. I was just dianosed a week ago and I am already depressed but I am so glad to find all of your support. I will be praying for all of us....

[ad8123]

It was really sad and difficult when I was first diagnosed. I had to go through stages despair and anger and my family had to adjust too. I hope you can be gentle with yourself and allow the time you need to come to terms with IC. Just hold hope I am heading back to work and many others have virtually normal lives with IC. It takes time to find out what works and what does not. It takes time to assimilate the idea of Ic and time to learn how to communicate with family friends co worked etc but after the "time" life just goes on. I have good days and bad. My IC is not great (I have pain problems more than anything-frequecy and urgency controled well and now I am sleeping thanks to neurontin), My Ic is not the worst, for awhile they told me to go on disabilty but I am getting better so I do not need to. I am getting better and you may too, keep hope alive even if only in a small corner for now. There are so many people living so well with IC ( I met some at a meeting and I was inspired ) . I will pray for you tonight. I wish all the best for you and that you will be gentle and understanding of all that you are going through, it is ok to be emotional- I think we all were at first.
Angela

[Imustpee]

This is going to sound strange, but after reading so many postings about people finding out they have I.C. and becoming so depressed I feel I am the lucky one to have had it since I was 6 years old. I will be 44 on Thursday. I know of no other way to be than how my life is with I.C...I think if I had been "Normal" for years and then got it, I would go crazy. Last night hubby and I went out to our fav rest...I peed 3 times while we were there and almost didn't make it home I was in so much pain from having to go again. But all my life has been just like that. I had an in bladder Elmiron treatment yesterday,,I think that is number 14. dr gave me Ditropan and Nortriptlyne yesterday..I was up 10 times last night...oh well... :dizzy:

[ad8123]

Imustpee, you have a very good attitude about this. i am working on it, when I was first diagnosed 1 year ago, some of these messages just made me cry. i would sit at the computer desk at home in the middle of the night and cry and cry. But as this years has gone on I think i am more accepting and I relize that life goes on even if it seemed like it would not at first so here i am one year later and it is OK.
Angela

[Imustpee]

Hello AD..I figure that I have lived with it all these years, and I will probably live with it for many more, might as well make the best of it. After all I am only getting this one life to live, so I am going to make the best of it..I can't tell you how many times I have fallen asleep on the toliet at 2 am...hahahha :)

[theclownster]

HI there! I've been off the boards for a few days and I'm trying to catch up. It looks like you've gotten some great advice. One thing I wanted to mention, is when I tried elmiron (twice) it caused really painful symptoms and an increase in my current symptoms - My doc took me off it and tried something else that worked better. I do know that it takes a long time to see if elmiron is really working, but if you are finding your symptoms worse, you should talk to your doctor. My doctor explained that in some people, that's the side effect and told me not to take it anymore.

I hope you are feeling much better soon!
Jennifer