Breakthrough Pain Meds ... input/insights requested.

Hi All,

I suppose I'm looking for some input regarding my breakthrough (BT) med use.

I've been on pain meds now for about 6 years and a combo of Ultram ER and BT meds for about 4 years.

The pain has been getting worse, the efficacy of the meds diminishing. I've worked with my PM trying some alternatives, but none turned out well. We tried switching to a low dose of Kadian vs. Ultram. That made me too sleepy. Hydromorphone doesn't work for me, oxymorphone gives me headaches and I would prefer not switching to oxycontin for various reasons, including the multiple dosing and not wanting to become tolerant to it for I use oxycodone as a BT on my worst days.

We've also tried anti-depressants to help with the pain (I'm actually very not-depressed).

So, aside from nutritional supplements (which I've added), and adjustments to my workspace (I've tried many, retained a few) the only remaining path seems to be to use my BT hydrocodone and oxycodone with greater frequency. But that worries me.

A few years ago, 7.5mg of hydrocodone had the efficacy that 10mg-15mg now does -- and a few years ago, I would only take a BT med about 2-3x per week. Now, I'm taking something roughly 5 days a week. Typically, that's 10mg of hydrocodone, perhaps 5mg more if needed. Or, if I'm in pain and it is later in the day, I'll take 5mg-7.5mg of oxycodone (though typically just once or twice a week). Thankfully, I still find 5mg of the oxycodone very helpful, and 7.5mg may even be at the edge of being too much.

That may not seem like a lot, but I feel that I'm on the brink of not being able to go a day without. Today, for instance, would be my 6th day in a row if I were to take a hydrocodone. So I'm writing this in a state of indecision. My back hurts, my hip hurts, my arm burns, etc.. I could lie down for a few hours and it will go away. Or, I could take a hydrocodone and be able to spend the afternoon active... probably at my desk writing (which is what I mostly do for my job), and/or help out my wife with some chores around the house.

This is basically what I find myself dealing with daily: I could avoid BT meds if I just lie down for a few hours, or could remain active if I can tamp down the pain. Even at this moment, the pain is at the point of it getting too hard to continue with this post.

The answer may seem obvious to some: just take the meds. But as I said, I feel I'm on the brink of a level of use I don't want to permit. Now and then, I'll have a good few days (Aug 20-26 for example, I only had to take one BT med). But more typically, I'm taking a BT meds 4-5 days in a row, then I force myself to stay in bed and not work, or take so many breaks through the day that I can't get much done (i.e. 30 minutes of work to 2 hrs in bed).

So, I suppose I'm looking for comments from those who've been at this point: is my near-daily use of BT meds trivial, worrisome, inevitable, etc..

hi there. i'm kind of dealing with a similar situation except i am only on oxycodone...I've gone from 5/325 x 4 a day to 15 mg oxycodone x 6 a day. I'm pretty sure some of it is my body acclimating to the pain meds but my condition has also worsened over the past year. I'm scared as the amt of pain meds i'm taking continue to increase that when it's time to stop my body is going to be so dependant that it's going to be awful. I try to space them out, take less etc. but the pain is so consistant and bad that it's really tough to do. We're going to try the patch as soon as it cools off a bit here in AZ. i can't take oxycontin 1- because it scares me to dealth and 2- bc i have crohn's disease and my absorbtion of meds, vitamins, supplements etc. is screwy so i'd pass the pill without the benefir of all of the meds. i hope the patch works as my primary pain med and then i can lower the frequency of the oxycodone and use only as a breakthrough med. i've asked about switching meds every month or so to avert dependancy etc. but my doc said not really a good option bc i'm already taking so much oxy...

Cogito....

I do understand what you are saying... the whole medication issue - tolerance, dosing, etc; the whole "do I take the BT med or not?; all of it. I've been at all spectrums over the last 8+ years.

I've been on HUGE amounts of ER meds and no BT meds. I've been on the opposite, too - as I am now - not much ER meds, but plenty of BT meds to use, as needed. I'm choosing to stay on this path, because (for me), I find it easier to pull back on my BT meds (for whatever reason) vs. having to decrease my ER med (if the need every arises). Does that make any sense? lol....

Just my opinion - but, over the years, I've decided that it's just a quality of life thing for me. I, too, could probably bring my pain levels down some if I were to lie down, etc. I don't have that choice now, particularly w/ twin babies. So, in order to function, I have to take my meds. Since I don't have side effects and they DO help w/ my pain - I'm fine w/ taking them....

I do understand your concerns; yet, on the other hand, you are on pretty low doses of meds. That's a plus, even if you have to use the BT med daily. What are your main concerns? Needing more and more (an increasing tolerance)?

For me, I've gotten past that hurdle of just accepting that I DO need the medication and I use what I need. It took me a long time to get here, though. I still have times where I'm so sick of needing to take daily meds; but, when I do decrease the meds - I quickly realize the "whys" of taking them!

Oh, another thought - I also use a muscle relaxer and a nerve med - and these are just as important to controlling my pain as my narcotics. Just a thought, because you didn't mention those....

Maybe the others will have some different thoughts. Again, I do empathize w/ what you are saying... but I also think you are on such low doses, relatively - that I wouldn't be overly worried about it....

Take good care - Tina

Might I suggest one of the following: ~Neurontin (which because of your tolerance don't discredit it until u reach a dosage of 300mg x3 daily or more)
~Lidocaine Patches
~Fentanyl Patches
~One of the multiple different creams made by Transdermal Therapeutics (these are no ordinary creams as they have a mixture of medications in them unlike other pain creams.)
Your doctor would have to get the form from one of the representatives and together you could see which of the combos work for you.
~I know you mentioned Hydromorphone didn't work but might I ask what dosage they had you on?
Hope your able to find some relief, wishing you less painful days ahead!!!

Wow you are very sensitive to medications. Woozy/sleepy/bad feelings that prevent you from functioning are when a medication is to much for your body to handle, which in this case if this happens at low doses and with wide variety its going to be hard to find something to help you, thankfully your not like some that get violently ill even with low dose pain meds. At least the lidocaine patches did work for one aspect of your pain, in terms of the hip joint pain your going to need to find a arthritis med instead of a pain medication to find help with it something like Celebrex. Nerve pain is hard to treat so hopefully with some of the new suggestions you might be able to find something I severely hope you can instead of ending up like some of us that are basically told to live with our pain after all options of meds and treatments fail. Wishing you the best of luck and keep us posted!!

I think there is very much a psychological difference between occasional use of BT meds and daily use. Have you talked to your doctor about your concerns about using more BT meds? I remember from past posts, your doctor wants to give you more aggressive pain management but you generally have chosen not to go for more heavy-duty meds.

I know I personally don't like to feel "dependent" on meds. Unfortunately, physical dependence is a natural result of taking opiod painkillers, and there's not really anything you can do about it. I understand your hesitation, but I believe your hesitation/resistance to more pain medication is probably making you suffer more than is necessary.

Have you tried Cymbalta or amitriptyline? They may help take the edge off the pain and are non-narcotic.

You might seriously consider setting up a custom ergonomic solution. I used to suffer from upper back pain and devised a system where I could sit in my recliner and work. It made a HUGE difference in my quality of life. For me, sitting at a regular desk was the biggest aggravating factor for my pain, so avoiding it really changed my daily pain levels. Maybe a pivoting over bed table or two could hold the rest of your work?

Cogito my reply to you in which started with "wow you are very sensitive..." is in no way being sarcastic which if you read my reply it is clear to see that. Its simply stating the fact that you are very sensitive to medications which is very unfortunate. I can see from your attitude that my attempt to simply suggest options and try to help you is not appreciated, in which I apologize for posting at all.

 

            I believe Cymbalta comes in 20mg ....30mg....and 60mg...and no.. you are not to break it up. This comes from their website. So far it has done me a good job like it has for Heather. I have been able to reduce my BT med's, and now take them only when needed as BT,... instead of a regular schedule like I was before.

       SE

Hi cogito - New member here who found the site while looking for info on the Butrans Patch, which I literally just started (seriously? I can't have a beer after a long day at work? *sigh*). I'm on some less strong medications than you are - my docs and I have narrowly avoided opiates thus far (and the Butrans sort of rules them out at this point), but I have a combination of extended release and break through meds as well.

And let me tell you - I *hated* taking my break through meds. My tendency was to wait until I was significantly in pain during the day before taking them. So I'd wake up, begin to ache, then the pain would increasingly flare until I'd finally give in and take something more - and by the time I did, often the BT meds weren't quite enough to fully help. They'd just be playing catch up to pain I'd put myself in. I'd still end up suffering through my day at work...

And my docs questioned me about this closely; why wouldn't I take my medication? It was there to take to help keep me from being in pain, so that I could live and function like a normal human. My pain psychiatrist gently scolded me and pointed out that by putting myself through this, I was putting my body through more tension, more stress, and more of the things they were working to avoid - not to mention dumping chemicals like cortisol in my system which was just making it worse. The docs started to try to regulate my medicine intake by having me break my meds in half and take some on a schedule to try to make it seem less threatening, then taking more on an as needed, break through basis. I resented the heck out of them for it though... I still didn't want to be taking all the drugs all the time.

As my pain began to decrease, I began to get more used to the idea though. I'm at a point now where the medications I'm on are no longer effective enough, so we're trying the Butrans patch, but I absolutely understand the hesitancy in taking BT meds all the time. If I had to add in the fact that they were opiates (with all the valid concerns that go along with them)... I would have fought taking more kicking and screaming. It took a lot of talking to my doctors and thinking about things to come to the decision that living with less pain had to be a priority, and taking medication with the help of my doctors to do it as safely as possible, along with all the exercise and all that, was one important way to live in less pain.

Sorry for the novel... but a lot came up when I read your question. I have a lot of sympathy for your questions and situation, and know I'll in the same boat again myself at some point. Be well, and take care of yourself!

Hi yellowness,

Welcome to the board. You might want to begin your own thread to introduce yourself. Other members would likely want to welcome you and those in a similar boat would appreciate your telling your tale.

I appreciate your response to my situation. I just looked up Butrans Patch and Buprenorphine. If it alone can manage my pain, it seems a possible option. I think the non-opioid side of the Ultram has been beneficial and I would like to keep using it, if only I could find a way to augment it without BT meds. I suspect I couldn't use it along with the Butrans Patch.

If all else fails, I might address this with my PM, but I suspect that this is one of those precarious conversations for it is also used for opioid addiction and I don't want my PM to think I'm subtly hinting that I have an abuse concern. Maybe I'll bring it up with my GP who actually has a suboxone practice in addition to his routine patients.

Hi Zap2,

I've been away for a couple of days and just saw your response.

I see my PM in just over a week and what to discuss with him is very much on my mind.

Yesterday, I had a conversation with my closest friend, who also suffers from CP plus has severe RLS. He has been taking hydrocodone for years, though recently has started tramadol and goes back and forth between them. He is also fortunate to have something of an insider's relationship with his PM as he is on a number of hospital boards, teaches at a medical school, and is otherwise "connected". He's not an MD, but a JD consultant for the medical community.

He emphasized to me how paranoid PM's are and, sadly, how careful patients must be in what they say to their PMs. I told my friend that as I have been migrating to near daily use of BT meds, if I have a fairly good day and don't take one, I'll feel a bit of withdrawal (cold sweat, fatigue). To my surprise, he told be I absolutely should NOT tell my PM that for the PM will then pull BT meds. He didn't quite say it explicitly, but I think he meant that the PM would be afraid I would sue him, accusing him of getting me addicted. He might be right, or as an attorney, generally advises extreme caution.

But I do need to talk to my PM about my increased level of use. Since my PM doesn't seem to want to add an anti-d (Cymbalta, etc.), and I don't want to give up ultram (as its SNRI effects have, I think, been very beneficial), what I'm now considering is keeping the ultram and adding to it a minimal dose of some other time-release opioid.

My PM had me try 30mg Kadian earlier in the year, and I have in mind something equivalent to about 1/3 of that. So if he goes for it, I'll be taking 300mg of Ultram + something equivalent to 10mg of Kadian.

I will do some research to see what time-release options there are which equal to 10mg of morphine over 24hrs.

If anyone had some ideas, please let me know.

OxyContin will increased your tolerance to oxycodone as well as oxymorphone as oxymorphone is simply put the end product of oxycodone..either way pain meds all have cross tolerance and its inevitable. If OxyContin works and you need multiple dosing then do it...for me their is no inconvenience of pain relief...sure I don't like pulling out a bottle of hydrocodone and taking it in front of people but then again its none of their business and I have a valid script...(I never carry an entire supply in one bottle though, older lady I met said she would put a days worth of pills in an old bottle so as to make it look like she didn't take them allot).

Back to tolerance though..what long term pain patients have to do sometimes is opioid rotation; they will take something like OxyContin for 3 months then switch to HydromorphContin or MS Contin...the cross tolerance with opioids isn't perfect so this can actually keep tolerance down...it's had some pretty good success and I bet if you mentioned it you might spark some interest and pain relief from your doc. I try and help out since it detracts from my discomfort so I hope this helps! :)