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Has anyone used Elavil to treat pain for Interstitial cystitis?

Responses (2)

ElizaJane23 20 Aug 2011

Yes, I do. I've just been dealing with IC for the past 4 months and Elavil is the only medication that touches the pain. It really helps but I hate that it is so sedating. I am on Methadone 70 mg/day for chronic pain and Oxycodone 15 mg for breakthrough pain, Lyrica, Soma - none of these had made any difference to IC. Are you using Elavil now, and is it helping? I have made you a friend - if you like "friend" me also and we can write privately. Regards -

sheila7281 20 Aug 2011

Eliz,

One more thing. I really believe all the hard drugs you are on in combination with the Elavil is causing the sedating. I take the Elavil at night to help me sleep with Ambien. Everyone is different but I would be happy to share some of the different approaches I have taken over the years. let me know if you want to hear about them. Or anyone outthere who suffers with this horrible pain.
Sheila

ElizaJane23 21 Aug 2011

Yes, yes I do - I would love to hear what has helped you, or that you've tried. This is such a different kind of pain - there doesn't seem to be any set things to try - what works for one might not do anything for someone else. No guarantees - just like life! When you have time, I would appreciate hearing.

karenknight 21 Aug 2011

Hi ElizaJane, thanks for your response. I have not tried Elavil yet, I have an appointment with my uroloist this week and I just read abou Elavil so I wanted to see if anyone was using it and if it was helping them before I mention it to him. I have had IC for about 4 years and have been taking Elmiron and believe me it does help but some days are worse than others. I was doing bladder instillations but I have stopped them recently, they helped a lot at first but my pain is typically in my uretha now so they didn't help in that area. I have never been on the Oxcycodone or any of those drugs and hope I don't have to. You should mention Elmiron to your doctor and get his/her thoughts on it. It has probably been the most helpful medicine I have been on.

ElizaJane23 22 Aug 2011

I can't use it - it has an ingredient in it that I am allergic to. This is the problem with many medications. My urologist prescribed a compound for me (made by the pharmacy) that had 8 different medications in it, prescribed for the urethra - apply 3 times a day. She's had lots of patients have great success with it. It doesn't have what I am allergic to in it either. I put it on and in two seconds I was shrieking my head off, in the shower trying to hose it off. It caused all the tissues to swell up, then come off - like a burn. You can imagine how awful that was! There are two other topical medications that I've tried (that I'm not allergic to) that caused swelling and severe pain - it's like I can't put anything on my pelvic floor. Sure do wish I could try Elmiron - that seems to help for a lot of people. Thank you though -

dms630 14 Nov 2011

I was just prescribed this medicine today for IC any complications or side effects!

sheila7281 20 Aug 2011

Karen,

I have been taking Elavil for about 4-5 months now. I
have IC,insommnia,Fibromyalgia,pudendal neuralgia,IBS and a history of IBS, Elavil I take nightly to help sleep and it does help for IC pain some among other pain. You might want to ask the doctor about Cymbalta. Though this medication works well with some and not others I must admit it has been the only med to help at this point with my pain. The IC and Fibromyalgia have improved where I have cut my pain medication in half and some days 3/4. Let me know what you and your doctor decide.

Sheila7281

ElizaJane23 20 Aug 2011

Hi Sheila7281 - nice to meet you. Sorry you have IC but it's nice to meet others that suffer with it. I've been on Cymbalta (60 mg) since the start of my IC pain and I am gradually weaning off of it. There has been no change to my bladder pain levels while decreasing. IC seems to be a very individual problem - what helps one person may not help the next. I know I am grateful just to meet someone who knows what I am going through. Regards -

sheila7281 20 Aug 2011

Eliz,

I have had IC for many years now. I have tried everything to help with the pain. Have you ever tried Toviaz? This was starting to help but caused way too much dry mouth and eyes with my other meds so it has been put on the back burner for now. I am only taking 40MG of Cymbalta for now. When I tried 60MG. it killed my stomach. Have you tried Savella? This can be taking instead of Cymbalta. For me it made me too nausea and stomach pain but it could be something you just swap over from taking the Cymbalta. They are similiar so you do not have to wean off the Cymbalta. That is huge for it is hard to wean off of Cymbalta. I it has also been recommended to me to try Nudextra(sp). I have not tried this but it has been proven to help people with chronic pain. It will be my next step when I feel the Cymbalta is not working or I want to try something else. I agree about having someone to talk to about IC so anyone out there wants to talk please feel free to write to me. My story is way to involved to write in one e-mail.

Sheila

ElizaJane23 21 Aug 2011

Thank you Sheila - I will be in touch, and will check out the medications you mentioned. Take care -

The Mad Man 21 Aug 2011

Sorry to hear about your Fibromyalgia, I know it can be a debilitating pain. I was recommended Elavil for pain and took it for years, (really with no success but I did what my doctor told me to do) and after years of this drug, it eventually caused a LOT of anxiety, one of the side effects. I went through withdrawal on this drug and will never take it again, so I suggest you try some of the other recommendations people have suggested. I would never take this drug for pain again, the anxiety become worse over time, more than I could handle so do some research and find out what's best for you.

sheila7281 21 Aug 2011

I took Elavil years ago and found it made me more tired than anxious. I was on a high dose at the time. Now I am on a low dose and find it helping. Everyone responses to medication differently. One can change medication if it does not help. If one does not like what there doctor says it is OK to seek another opinion.

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