[Susanne C.]

I know that many of you get by without resorting to heavy pain medication, but this is not an option for me. I have CMT, with advanced small fiber neuropathy, nerve fibers at hip were shown in skin biopsy to be fraying two years ago, below that they were going and gone. I also have large fiber neuropathy with visible muscle wastage. Lately arthritis has reared it's ugly head, affecting pretty much all the same areas- feet, knees, long bones in legs, hips, arms, hands, as the CMT. I wake up early, take ibuprofen, crawl back into bed until it starts to work.

I have been getting by for years by taking oxycodone as needed, basically twice a day, but now I wake up in pain and go to bed the same way, sometimes the pain is so bad I have tears in my eyes. I have prided myself on my high pain threshold, often praised by doctors and dentists, gave birth to three big babies without an aspirin as they say, so this is pretty bad. With the winter coming it will get worse, cold is the very devil and with oil at $4 a gallon, keeping the house toasty is tough.

My doctor is always open to suggestions. I think he wants to try the BuTrans patch. My husband wants to keep the cost down in case insurance changes in the future- we have a "cadillac" plan now, but he thinks a vw is coming. OxyContin is very expensive from what I have heard. MS Contin is cheaper, but the idea of morphine seems extreme. I am a relatively strong 51 year old woman with no other health problems, but disabling pain and increasing weakness.
Does anyone have something they would like to give their experience with? Good or bad? This is not a supplement and diet question. I have read everything on this forum, and follow the suggestions that apply in my case, Mrs. D.'s advice on magnesium really works to reduce the muscle spasms, but this condition is progressive and not susceptible to improvement.

[Kitt]

No answers for you Susanne C. I, too, have a high threshold for pain however the pain seems to be getting worse and sometimes I wonder about what else to do. CMT keeps marching on and aging doesn't help either. I do take Advil on occasion. Usually before bed nowadays. I also think osteoarthritis (wear and tear) has set in. Cold and damp seem to be worse on my body. But hot weather isn't that great either. I like it around 70 degrees outside.

We had to change furnaces after years of fuel oil. The old furnace was really not doing the job anymore and wearing out. And it was old. So we got a propane gas furnace. A lot cheaper to run in these times. We are glad we chose this one instead of another oil furnace. As I said, we had to get a new furnace. We keep it around 69 degrees at night and 71 or 72 degrees in the day. But when it really gets cold it will be set a bit higher.

Hope you find an answer. Take care.

[Sam]

susanne,
Some people with neuopathies take gabapentin with good results. i'm not that familiar with your problem, so the best I can give you is a generalization based on other's neuropathies. Gabapentin, in some people can make them extremely drowsy, but others do fine with it.

If you wind up needing morphine, don't fight it. No one likes to make that leap into narcotics, but sometimes it can't be prevented. You shouldn't have to be in agony all the time.

Sam

[Susanne C.]

Originally Posted by Sam

susanne,
Some people with neuopathies take gabapentin with good results. i'm not that familiar with your problem, so the best I can give you is a generalization based on other's neuropathies. Gabapentin, in some people can make them extremely drowsy, but others do fine with it.

If you wind up needing morphine, don't fight it. No one likes to make that leap into narcotics, but sometimes it can't be prevented. You shouldn't have to be in agony all the time.

Sam

Thank you for your encouragement Sam. I am already on gabapentin, I failed to mention it because just about everyone here is. I would never be able to sleep without it, and I don't have any side effects. It does work for the burning and zapping pains, I notice if I miss a dose, and it used to keep the "hamsters" at bay ( that feeling that small, furry creatures are running all over your feet and legs) but I notice that they are coming back. The problem with neuropathy is that everything feels like something else! Most of my pain seems to be coming from the long bones in my legs and sometimes arms, like they are being crushed. Even my super soft non-binding socks feel like riding boots three sizes too small, but I can stick a pushpin into my calf and not feel it. Sometimes I even do, just because it is so weird. It freaks the kids out.

[mrsD]

For many people on chronic opioid treatments, which are
becoming ineffective, the move is to fentanyl. I guess the recommendation for BuTrans, is motivated by patent activity and sales reps. Fentanyl does carry a risk of overdose, and I expect that sales reps for BuTrans capitalize on it to convince doctors to use the BuTrans instead.

Some people like fentanyl and find it useful and some don't.
I don't know much about patient response from BuTrans since I retired and don't see patients anymore. You'd have to Google some places where people discuss just pain meds.

In any event patch of either may give you more broad and
reliable relief than oral or Timed release oral.

[Susanne C.]

Originally Posted by mrsD

For many people on chronic opioid treatments, which are
becoming ineffective, the move is to fentanyl. I guess the recommendation for BuTrans, is motivated by patent activity and sales reps. Fentanyl does carry a risk of overdose, and I expect that sales reps for BuTrans capitalize on it to convince doctors to use the BuTrans instead.

In any event patch of either may give you more broad and
reliable relief than oral or Timed release oral.

I love my doctor,but I do think he is a little affected by whatever the reps are pushing. I also think he wants to see how it works!
My only worry about the patches are that I have heard they start to peter out before the 7 days are up. Do they really stay on in the shower and stuff?
The oxycodone is still very effective when I take it, but two per day only gives me about ten comfortable hours, and it wires me up so I don't take it at night when the pain is often worse. Waking up in pain is a relatively new development and I hate it. I always loved the mornings and now I dread them.
Thank you!

[mrsD]

All patch dosage forms for drugs carry possible complications.

Rash and reaction to the adhesive is common. Falling off happens too. Exposing the skin to heat in any form, can change the release rate and perhaps lead to overdosage.

Alot depends on the person, how allergic they tend to be as far as the stickum goes, and how intelligent and reliable they are to follow directions. Sensible people can do it.

You could try just one month on fentanyl and see how you do.
It takes 3-5 days to reach a steady state with fentanyl patches, so converting over may be rocky for you. Make sure you have rescue meds etc.
BuTrans may take a bit longer to reach steady state.

DanP who posts here sometimes has used fentanyl for years.
But I don't want to minimize the risks. Fentanyl has caused many deaths over the years to accidents and misuse, and manufacturer defects/recalls.
But on the other hand it remains common in hospitals and long term care facilities too.

You'll have to Google patients on BuTrans.
This is the site for reported FDA side effects:

http://www.drugcite.com/?q=BuTrans
You can see it is new and not much reported yet.

Too new for Askapatient...no ratings yet.

Type into Google: Does BuTrans Work? And read what others think.

I do think you should understand the differences between buprenorphine and opiates. They are different. Buprenorphine affects dopamine receptors to some extent in some patients. This is not detailed in the insert, but buprenorphine has been used in refractory depressions. Still experimental.

For what it is worth, 2 of our cats have had buprenorphine following spay. Weezie was totally NOT herself and became afraid of everything here, and I had to take her to my room (with the dark drapes as her eyes were dilated too much) and stay with her. Our other kitty, didn't react to it this way at all.
She was fine. Maya will be going on Oct 31, and I don't know how she will be on it, post op. Vets use this now for animals pretty commonly for severe pain relief. But I think responses are more variable for people too, because of the nature of the drug itself.

Fentanyl is more predictable I think. Some find it very sedating however.

Butrans insert:
http://www.rxlist.com/butrans-drug/c...armacology.htm
You can view the other sections of this site on this drug too.

[Brue]

Originally Posted by Susanne C.

I love my doctor,but I do think he is a little affected by whatever the reps are pushing. I also think he wants to see how it works!
My only worry about the patches are that I have heard they start to peter out before the 7 days are up. Do they really stay on in the shower and stuff?
The oxycodone is still very effective when I take it, but two per day only gives me about ten comfortable hours, and it wires me up so I don't take it at night when the pain is often worse. Waking up in pain is a relatively new development and I hate it. I always loved the mornings and now I dread them.
Thank you!

Yeah, the time-release pills like Mrs. D says are probably your best bet. I was going up and down in and out of pain, and they finally gave me tramadol 200 mg time-release 24 hour pill recently that I take in the morning. Blammo! I feel so much better, there's no comparison. You need time-release. I would recommend it to anyone, no matter what type of pain meds you're taking. I get the crushing feeling in the morning too, but as soon as the tramadol and gabapentin kick in, I'm much better.

[ger715]

Susanne,
I am on a high dose of Oxycontin (60mgs every 6 hrs.) as well as Percoet 7.5mgs up to 4 times a day). I deal with pain from spine fusion/laminectomy 7 yrs. ago and perpheral neuorpathy. Still have pain; but would be much worse without meds.

It's a hard call. I do not like the fact that I am taking this much narcotics. The constipation is a nasty side effect. Do wish I had never allowed myself to get to this amount of narcotics. I would advise to take as little as possible; while still getting some pain relief.

Gerry

[Susanne C.]

Originally Posted by ger715

Susanne,
I am on a high dose of Oxycontin (60mgs every 6 hrs.) as well as Percoet 7.5mgs up to 4 times a day). I deal with pain from spine fusion/laminectomy 7 yrs. ago and perpheral neuorpathy. Still have pain; but would be much worse without meds.

It's a hard call. I do not like the fact that I am taking this much narcotics. The constipation is a nasty side effect. Do wish I had never allowed myself to get to this amount of narcotics. I would advise to take as little as possible; while still getting some pain relief.

Gerry

Thank you for your response, Gerry. Right now I am getting adequate relief from just the 7.5 oxycodone, but I am having a lot of pain when I wake up, and in the evenings. May I ask how long it took you to get up to such a high dosage? Besides the side effects, are you able to function normally on such a high dose? Are there cognitive effects? I definitely do not want to take more medication than I need, but I do need some pain relief in order to function, both things that have to be done and some things I enjoy. I still have kids at home and a big house to neglect, and the pain relief is a huge quality of life issue.

I have arthritis of the spine, several ruptured discs, L-4, L-5, had a laminectomy 12 years ago, but very rarely have back pain, which is more intractable, I believe, and may require higher doses for you to be comfortable.

From my own research as well as what our pharmacist has said, opiates are some of the safest drugs with the fewest side effects for this level of pain relief. There is a lot of stigma attached to them, but I don't really care about that. I will feel uncomfortable, though, getting a prescription filled for methadone if it ever comes to that, but it is cheap, and appears to be effective for neuropathic pain.

I have to take miralax daily anyway for chronic issues, possibly related to the CMT, so that takes care of the constipation side effects. I have had that particular problem since early childhood.