The waiting time is a bit ridiculous. I know that there is a 6 month wait here after they review your case and decide to accept you.

I used Neurontin for about 5 years, but maxed out on the dose. Lyrica made me a zombie and others (cymbalta, lamictal, Namenda,...the list is long) I couldn't tolerate or they did nothing for my pain.

This pain mgmt doctor put me on the Fentanyl patch....which delivers medication 24/7!! It works great on the neuropathy. He had told me it is very effective on nerve pain and to be honest I didn't believe him at first. But once I started with the first patch (takes a couple days to start wokring), I was pleasantly surprised and grateful. It doesn't help as well with my joint pain, but it does take the edge off of it.

I was glad to hear someone else is on this patch - my husband has had neuropathy for 12 years and has just started on this (about 2 months now) after everything else stopped working and he was "falling apart". He's on 125mg every other day.

He still finds he has to take the Oxycodone for breakthrough a few times a week. You mention "it takes the edge off" - does it ever go away? I think my husband was looking for it to do more, but is now accepting that this is probably as good as it gets?

I'd appreciate any input.

Thanks, Linda

Do you mean 12.5 mcg...instead of 125mcg? 125 mcg would be super huge dose. Whereas 12.5 mcg would be a starting dose (and you said he just started), with room to go up.

It just takes the edge of my joint pain, but it significantly helps my nerve pain.

If you husband isn't getting the relief he was looking for, then maybe he needs to move up to the next size patch (25 mcg).

Hi All... I was recently prescribed the Butrans patch at my first visit to the PM doctor. I had to discontinue it after 2 two-week attempts at wearing it because the nausea and extreme almost constant hot flashes and sweating to the point my clothes and hair would be wet. I was so disappointed because, as Madison Girl said, I "caved" after four years of battling this barbaric neuropathic pain with just Gabapentin. I had so hoped that I was going to be able to escape at least some of it. I tried Cymbalta and Lyrica and felt so spaced out I didn't even feel safe driving a car and just couldn't function. I too have reached the point of "Despair's" post. I will return to the PM doctor next month and see if there is yet something else to be tried. I can't keep trying. Reading all your posts always informs me and helps me with ideas.

Butrans can be very effective, I know someone on the forum who has had good results with it and she is a very severe case. It must be frustrating when you are not able to tolerate a medication that could help.

Sorry but anyone who is expecting 100% pain remission, it isn't going to happen. A dose that would give that would also knock you out, maybe permanently. I hate the pain scale since pain is obviously so subjective, but the goal is usually a 3 or 4, low enough so that you can concentrate on distractions like crafts or reading or work ( I know work can be a necessity not a distraction!) and hopefully get your mind off the pain for most of each day.

A vastly improved quality of life is a realistic expectation. When I have a bad flare despite the meds I imagine that is what I would feel like on a normal day without pain medication and it is pretty scary. Same on the very few occasions when I forget to take them.

Our PCP handles pain management for me, he promised to take care of me when the neurologists dumped me after finding severe SFN (no small nerve fibers in feet and legs) and LFN (atrophying muscles in feet, legs, and hands) due to hereditary neuropathy, progressive and incurable. He explained that I would be on something for the rest of my life, and probably have to change as time goes by since I was 48, but we started with MS Contin ( time release morphine) as it is relatively inexpensive. It has worked very well, I am on 30 mg. x 3, along with 10 mg oxycodone for breakthrough pain, 600 x 3 gabapentin, and 10 mg x 3 baclofen for muscle spasms. I also have 5 mg Valium to break severe muscle spasms, usually attacks of pudendal neuropathy which are horrible. I have been on the same dose of morphine for 2 years without escalation.

12 hour time release medications are rarely that, I was having pain in the afternoons and waking up with it at night when we tried getting by with 2 MS Contin per day. 8 hours is more like it. Some types of insurance will not cover 3 per day, as the drug descriptions imply 12 hours of relief.

It is a lot of medicine but I still am able to read complex literature, play strategy games, drive a very little ( the complete lack of feeling and increasing weakness in my legs is the limiting factor rather than the medicine), cook, and homeschool my youngest.

I am very happy for you, madisongirl, that you are going to get some help with this. I hope that you do not have to wait six months for it! That seems very cruel.

Thanks, Susanne, for your experience and opinion. I particularly wonder about your pundendal nerve flares you mentioned. Are they episodic? I know this is what I'm experiencing; deep aching and burning pain in all my most private parts, groin and down my thighs. This in addition to every other fiber of my being. It was hideous last fall, seemed to improve over several months (never completely gone) and then a couple weeks ago is hideous again. Like another poster recently said, I literally have felt it move into regions of my body that I couldn't have dreamed of. I have a very hard time articulating this to the doctors. I know they're professionals but it's just so humiliating to be reduced to this. I so wished the patch had worked for me. I'm open to trying drug I never would have imagined.

This is also one of the reasons I was put on the patch...insurance would NOT cover the use of Oxycontin more than twice a day, since the medication 'states' it works for 12 hours, when, in FACT, it does not even come close to that.

More and more insurances are jumping on board to not cover three times a day for long acting medications.

But I must add: The patch completely eliminates ANY peaks/troughs with medication and therefore, pain relief is truly consistent throughout the day/night.

[QUOTE=en bloc;1166092]Do you mean 12.5 mcg...instead of 125mcg? 125 mcg would be super huge dose.

Yes, he is on 125mcg every 48 hours after previously being on Hydromorph Contin 90mg, Gabapentin 3600 mg, as well as the Amitriptylene, daily. Lyrica did nothing for him. So this is not his first course of action for the pain.

These meds had been increased gradually over the last 10 years or so. About 2-3 months ago, over the period of a weekend, they just seemed to just stop working. His feet had always been the main issue and gradually his hands became effected as well, but that weekend the hands got 600% worse. He couldn't even hold a cup without it setting the pain off. He then seemed to reach the end of his coping mechanisms and completely broke down.

Thank goodness for a wonderful doctor (GP, not Neuro) who when I got him in after the weekend put him on 50mcg of Fentanyl, and gradually increased it.

My reason for asking is that he does have some quite good days, and compared to how he was that weekend, he is 100% improved. But he still does get days when his hands are bad and the smallest things set them off - holding a cold drink, holding anything rough etc. He really doesn't want to increase the meds, and is wondering if he is expecting too much?

He is lucky in that he has very little side affects and is able to function well.

Linda

It is really hard to describe, honestly when I try my doctor just cuts me off and writes the Valium prescription. He is at least as embarrassed as I am and that is saying a lot. We leave it at "muscle spasms" which it is. The worst pain is episodic, the burning waxes and wanes through the day but is a daily issue.
There is an Internet forum for pudendal neuralgia which offers better descriptions, yes the pain is horrible, impossible to sit still, just pacing. I have tried hot baths as well as ice, but the Valium helps most, sometimes it takes two of the 5 mg. but it works pretty quickly.
Sitting on hard chairs for too long and too much time in the bathroom seems to trigger the sharp shooting pain.
i think it is a poorly understood condition but it makes sense that as the neuropathy moves up into hips and waist area that it would affect EVERYTHING. My skin biopsy six years ago showed the nerve fibers gone at knee level and breaking down at hip level. I have burning around my waist and ribs now too.
I completely understand how awful this is.