Neurotin and Duragesic Patch for Pain?

[Flowerchild]

Hi everyone. It's been awhile since I've been on. I have been in remission for about 3 mths but now it's back. I have been suffering with a frozen shoulder and have been on a bunch of different meds for pain. I think that's what has triggered this flare along with the stress of severe pain from the shoulder. I was prescribed Neurotin (anti-seizure med. which is widley used for pain) and the Duragesic patch for my shoulder. Has anyone used it for their IC. I did read in the lectures that Neurotin is a that is being used now for IC but do not see any postings from current users. And the patch, doesn't is bother the bladder? Uggh!!! I just don't need an additional SEVERE pain right now :( Do any of you have frozen shoulders too? I'm wondering if this could be an auto-immune issue like IC. Thanks to All, Flowerchild
ps...I was so sad to hear about Auntie Deb.F. She was such an angel to me when I first came on this board. I will miss her.

[Flowerchild]

I'm sorry for all the confusing mistakes in my post. I've been up since 2am with pain and it is hard to even type with this darn shoulder. :o
Flowerchild

[Pain_Man]

Been up all night in pain myself. Have my legs crossed tight as I type this to try to help.

Somedays, all the drugs in the world don't help.

All narcotics can cause "bladder retention." I stress "CAN"; they don't have to. But if you are suddenly having even MORE trouble that usually urinating, then it may be exacerbating the retention. But I doubt it. This is something that occurs in less than 1 to 3% of patients.

I feel for you. It just never goes a way.

"A man must have a mind of winter to contemplate the pain that is and the pain that is not."

Yes, I know, I altered. Can't even remember who wrote it, Frost? Eliot?

I have been in pain, more or less severe, for the last twelve plus years. EVERYDAY. I can see how people lose it. I've come close myself.

But you have to keep on hanging on. I have a wife who'se made tremendous sacrifices for me and a daughter that I have an incredibly strong bond with 4 year old daughter. (I've been home wiht her since she was 6 months; that's me, Mr. Mom).

I've found some relief from medical marijuana. OI also take Valiium for my pelvic floor spasms. IC being the weird bird it is, it may take a while to find the right combo that keeps it down to a dull roar. That's the best most of us can hope for.

[rachelm]

Well I'm one of the 1% who gets retention. Ugh! I am already prone to high post void residuals when I'm flaring but both times I've had to go on strong pain meds I've ended up having to self-cath to empty my bladder. I still feel full but I know it's empty.

I take Neurontin, Elavil, and Zoloft for nuropathic pain that intercepts pain receptors.
I also take Morphine currently because I've had a lot of pelvic pain. Even with the retention I can't afford not to take anything for pain because it's too excrutiating to stop.

I am not retaining since I had the trial interstim done a few days ago. I've had an additional pain relief benefit which has cut down tremendously the pelvic pain I was experiencing. I still hurt when I sit at the computer and type and I'm not ready to go off my morphine yet but I'm trying just one pill every dose today to see if I can handle it. I'm sorry you both are in so much pain. I understand having to stop my normal routine to give my body a chance to rest. I'm still hoping to go back to work at this point but I've been on medical leave for 4 weeks. I know many other I.C. patients that take the Duregisic patches along with neurontin. If you notice it helping your flare it may be beneficial for your I.C. too. If you think its making your flare worse then I would ask for another alternative.

[Katrina]

Neurontin helped my pain and luckily I had very few if any side affects from it. Unfortunatly not sure it is helping anymore. (maybe my pain just changed cause)It did help for years though. Good luck I hope it helps you.

[Flowerchild]

Thank You all so much and my heart goes out for your pain . It amazes me how I don't know a single person in my life with IC or a Frozen shoulder that even knows what these conditions are but there are hundreds on here. Thank the Lord for the ability to reach out to others with the same issues that understand. I'm thinking about slapping on that patch tonight. My shoulder pain is almost unbearable and the bladder is right behind. Oh for some relief scream I just hope I can function on the patch. My doc said I could cut it but the instructions say not too. Any input on that?
Pain in NC....Flowerchild

[sue041]

Hi, I just wanted to make everyone aware that morphine is bad for the liver and the kidneys. Some of you probably already know this, but it does not hurt to mention it. Because of it being so hard on the organs that is why my doctor put the pain pump in and it just goes into the nerve that leads to the bladder, that way it does not hurt the other organs. I have morphine in there along with bupivicane, there are times when I must take some oral morphine, but I try to keep my pump turned up so I can cut down as much as possible with the oral morphine.
Hope this is not too confusing. Good Luck to all and I will keep praying for a cure.
Sue

[franya]

can i just ask if you have been in pain for a long time? i am going on year 3 of constant pain. anyone else it would help to hear from others out there.

[lotsofgirls]

Hi Franya,
I have been in constant pain since 2001. I am in a pain management program right now to get out of the pain cycle.
Cath

[dminton]

Franya-

I have been in pain for the greater part of 3 years, I toughed it out for a long time and found that the non-narcotic things just don't help. I finally broke down and started using a Vicodin every 3-6 hours and am much happier, still not out of pain entirely but it does help. If I really get stressed about the pain, my doc wants me to take Xanax to relax, he thinks the anxiety of it all just adds to the problem. Imagine a doctor actually telling you to take as much as you need! He even got mad at me the other day when I told him I resist taking it because it makes me sleepy! Anyway, you aren't alone.

[Julie Smith]

I've been on neurontin about 6 weeks and noticed a HUGE improvement within a week or two. I was ic diagnosed last feb. 03 and also constant pain, severe pelvic sharp stabbing pains. Saw pain dr. 10 days ago and he added morphine and muscle relaxant. I so want my life back, work, exercise, sitting-movies, no constant pain etc.

Hope we all feel better and kick this ic. Thank you all so much, I don't know what I'd do w/o this message board. Julie hi

[franya]

Hi All

Thank you for your posts It does help to hear teh other stories. Just to know I am not imagining this whole disease. THe pain sometimes makes me feel like my life is useless what can you do when you are in pain? Not much and I like to live a full life.

Take care

Franya

[ICNDonna]

Franya, it sounds like you may need to see a pain specialist. My suggestion is to ask your physician for a referral.

sending an encouraging hug,
Donna

[alana rose]

Franya-
I have been in constant pain for one year and it is terrible. I have had many flares (six since November) My gp has put me on duragesic patches (Fentanyl) 25mcg and I have to say it has been amazing! I wake up and actually plan what I want and can do that day! It is incredible. Right now she is giving me a two-month holiday from the pain-she has given me a two-month prescription. After that, I am going to go off of the patch and see how I feel. If I need to go back, she said that it was no problem. She believes in quality of life-whereas my uro won't give me anything stronger that empracet (and as we all know, empracet just doesn't cut it at times) The patch has been a miracle for me. I still have breakthrough pain at times (especially if I had a long day at work, by the end of the day I may have some pain. Then I just take an empracet) I started changing the patch every three days, but find that I definitely need to change it every two days. Good luck-we all deserve to feel better.
alana

[lotsofgirls]

Alana,
I am soooooo happy to hear your pain is being treated!! :cool:
Cath

[Ginny Doll]

I am in my fourth year with neurontin and Elmiron. I had to increase neurontin to 4 times daily last year. In the third year I had to add oxycontin in a low dose. I tried substituting nortiptylin ( an anti-depressant) for oxycontin last July when I was was down to 1 10 mg tablet of oxycontin. It worked great and I have been taking nortriptiline ever since with Elmiron , neurontin, allegra, ditropan XL. I went into a fast remission when I made the switch so have been in remission since this past July. Oxycontin helped me so much but I was ready to try another med and Teri had had luck with nortriptiline and no luck ( like me) with elavil. so thanks to her tip i tried it. I have no anxiety anymore and the main side effect has been hair loss and thinning. I am still a fashion lover and so had to find help for my hair. I found a great long wig from Paula Young wigs and never felt better. The synthetic hair is better than my real hair ever was and if all my hair grew back tomorrow I would keep wearing the wig 90 per cent of the time! It seems to be a big hit.
I hope you find real pain relief soon! Hugs, carolyn

[tcbc1989]

i have been on Neurotin for 2 years- 800 mg , 3 times a day. I noticed a huge difference within a few days of starting Neurotin ....the pain was definately diminished. I now have a duragesic patch that I started 3 weeks ago because I was having some breakthrough pain. My urologist also gave me roxicodone to take as needed for breakthrough pain. I am hoping that someday i will not need any medication for pain. I need to plan my days according to my pain level and that really STINKS!!!! But it could be worse, right! frown

[tcbc1989]

Hi to all,
I have a queston about Neurotin that probably should be adressed to my pharmacist...i have been on Neurotin 800mg three times a day for about a year....does anyone experience any problems with fluid retention or swelling of their extremities? I have been and willl be checking with my doctor this coming week.

thanx...tina :confused:

[Dianna M.]

I have been in severe pain from IC since Nov 6, 1997. I awoke from a pelvic surgery and have had agonizing bladder pain ever since. I have been using Duragesic as my main pain medication for over 4 years and I use 75mcg strength. I also use oral morphine for breakthrough pain and B&O suppositories for bladder spasms. The B&O also works to get rid of the sweating that many of us have who are taking narcotics, which is an added benefit.
I have been on most of the pain meds out there and I have spent thousands and thousands of dollars seeing many specialists and trying many different IC therapies. Unfortunately, nothing has made the IC better and many things like, DMSO, has made the bladder pain much worse.
I am more than happy to chat with anyone who would like to have details of what treatments I have done and important things that if I was to do them again I would do - for instance any catheterization I ever need will always be done by a non-latex child size catheter. This is the best for me and I have much less pain when I use this over the large latex ones.
I am going to speak to my doctor next month about the possibility of going on an internal morphine pump. I am getting worried about my liver and how it manages to filter my system with all of these narcotic meds in it.

[franya]

Flower Child,

I am on the patch as well as going to be started on neurontin. I wanted to ask you do you have a problem with the patch falling off? And did you gain weight since you started? Thank you for the input

[Dianna M.]

I have had problems, especailly during the summer, during "sweaty" hot climate, the patches do come off. If you contact the company where they are made they will send you out some tape of adhesive to use to sto them from coming off. For me my physician always writes me for 15 each motnh. so I now have a big supply of them. If one comes off I just put another one on and don't worry about it, but that abviously can only be done if youhave extras. If you explain how this works toyour doctor h/she may give you a few extras. There is little worry that you are going to do anything else with the patch tham wear it. Not a whole lot you can abuse about it so it may be easier than some of the pill form meds.

[Dianna M.]

I have had problems, especailly during the summer, during "sweaty" hot climate, the patches do come off. If you contact the company where they are made they will send you out some tape of adhesive to use to sto them from coming off. For me my physician always writes me for 15 each motnh. so I now have a big supply of them. If one comes off I just put another one on and don't worry about it, but that abviously can only be done if youhave extras. If you explain how this works toyour doctor h/she may give you a few extras. There is little worry that you are going to do anything else with the patch tham wear it. Not a whole lot you can abuse about it so it may be easier than some of the pill form meds.

[Dianna M.]

I have had problems, especailly during the summer, during "sweaty" hot climate, the patches do come off. If you contact the company where they are made they will send you out some tape of adhesive to use to sto them from coming off. For me my physician always writes me for 15 each motnh. so I now have a big supply of them. If one comes off I just put another one on and don't worry about it, but that abviously can only be done if youhave extras. If you explain how this works toyour doctor h/she may give you a few extras. There is little worry that you are going to do anything else with the patch tham wear it. Not a whole lot you can abuse about it so it may be easier than some of the pill form meds.

[Dianna M.]

I have had problems, especailly during the summer, during "sweaty" hot climate, the patches do come off. If you contact the company where they are made they will send you out some tape of adhesive to use to sto them from coming off. For me my physician always writes me for 15 each motnh. so I now have a big supply of them. If one comes off I just put another one on and don't worry about it, but that obviously can only be done if youhave extras. If you explain how this works toyour doctor h/she may give you a few extras. There is little worry that you are going to do anything else with the patch tham wear it. Not a whole lot you can abuse about it so it may be easier than some of the pill form meds.
I have gained lots of weight since I got IC. If ti is from one of the meds or the inactivity I would say the inactivity and increase in food eaten have done the weight gain. Not being able to do lots of other stuff makes eating seem nicer some how.

hope this helps
Dianna

[franya]

Dianna,

You have a very understanding Dr. I feel I have to fight for everything I get. It is very nerve wracking. Talk about adding stress to my life!! I am glad you told me so I do not feel like I am doing anything wrong. Hope you stay pain free>

Fran

[Sesheta]

I posted information on this before, but I can't remember where. :rolleyes: But as far as feeling guilty about wanting pain relief --it is not acceptable in this day and age. The "Pain Patients Bill of Rights" entitles a patient to receive "treatment for the purpose of relieving intractable pain," meaning that your doctor is not supposed to make you feel guilty or turn you down on pain meds in the face of legitimate pain. If anyone is having problems receiving acequate pain relief medication, look the "Pain Relief Act" up on the Internet and take it to your doctor OR find another doctor.

With blessings and a hope for a painfree day.

Sesheta

[ads]

During the second year of IC/CPP, I was put on 3,600 mgNeurontin with Hydrocodone -- it only helped a little bit. But others have had luck with it. I was given the Duragesic patch by a pain expert in LA who treats IC patients, but it made me very sick.

[blondiecat]

I have been in constant pain since November 1996. I will be going to my very first Pain Doc on Feb 8th...Just a week away...thank you GOD! It has been a hard row to hoe as I went from 96-04 before getting a diagnoses of IC. Most of the doctors I saw in the past told me that it was "All in my head" and would send me on my way elsewhere. Very frusterating to say the least.