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tortoisegirl 08-04-2012 01:32 PM

How often to take methadone
For anyone who has taken methadone: What dosing schedule works best for you? Times per day, and even or uneven doses.

I was on methadone previously for about three years, but never got ideal relief since my doctor had a dose limit for me of 70mg/day; he wouldn't increase my dose or try me on a different medication. To maximize my pain relief for work, I ended up only taking it twice a day, six hours apart in the morning (40mg & 30mg). I've spent the last few months switching to morphine, then fentanyl patches, at doses which should have been more than equivalent, but wasn't able to get even close to the methadone pain relief. Plus I was in withdrawal and had more side effects.

So, we started me back on methadone last week at 120mg/day. The doctor wrote it for 40mg three times a day. I quickly realized that I could no longer tolerate the 40mg at a made me woozy, plus it wore off after a few hours. So, I have been trialing splitting it up, taking 20-30mg every 4 hours (so I'm still at/under 120mg/day).

I'm shocked that I only get about three hours of relief with it. Previously it was more like 5 hours. Pain levels are much improved from the last few months, and maybe slightly better than prior to that too. Maybe it will improve over time, such as when we do any titration. I read that every 6-8 hours seems to be the norm for methadone dosing. I know I am a fast metabolizer of pain meds, but it seems ridiculous that taking to take it every four hours, and even then, it takes an hour to kick in, two hours of relief, and then an hour to wait for the next dose.

Has anyone heard of a compounding pharmacy being able to make the methadone time delayed? I know as a medication it has a very very long half life, but its duration of pain relief is known to be short, especially for me. It seems to otherwise be the best med choice though. I know another option is a pain pump (since some doctors now use methadone in them), but I don't think I'm there just yet. Thanks! Best wishes.

Shoreline 08-05-2012 05:19 AM

Re: How often to take methadone
Hi T girl, Thats the same dose i took for for about 2 years prior to my pump. I took it 4 times a day and I get it only lasted 4 hours for pain even though it has a long half life. No I have never heard of a pharamcy making a LA version, in their eyes, no need because of half life but taking it for pain is different than once or twice a day for meth maint for addiction. I usually found by the 4th dose I had enough in me to coast through the night without much of a problem. Try to time the last dose closer to bed and hopefully it will get you through the night. Although it worked well for pain I hated the way it felt and how it robbed me of motivation too improve my own situation. It was more like that dose made it tolerable to live with pain and shut off from the world. Which is something I wouldn't except now. When I had the pump put in they started very low and I had plenty of meth to taper down for a couple months, but because I despised how it made me feel, I took a little for 3 days and then just stopped. It did take 6 months to get the dose right, but at the time I had gone with pain untreated for 8 years so I figured what's 6 months compared to the lifetime ahead. although I dont get much more pain relief than on meth, I only have about 1/10th the side effects from intrathecal morphine and then dilaudid.

Since switching to dialaudid Ive been able to limit increases to small increments every 2 or 3 years. I dont want to go back to sweating and falling asleep while watching TV in the middle of the day. Knodding out really isn;t something you want family or friends seeing or at least I didn't, so switching to the pump was like having my brain turned back on as far as cognative effetcs, I had the energy and motivation to work out, loose 40 lbs and return to work part time under the ticket to work program SSD offers. It took about a year to get from freshly implanted to gong back to work part time but it has been the best decsion of my life as far as dealing with CP and disablity.

Their is nothng worse for your health then being sedentary and nothing worse for your psyche than being home bound and apretty much a shut in due to pain, side efects and physical limits that I was able to increase through excercise. I really have never heard of someone on meth working out or excercising. It's a motivation killer along with a labido killer. Their is a price for everything. The idea that opiates are somehow benign once you get used to the dose is just a myth. People get used to feeling clouded and dont realize how severe it is untill you remove that component from pain management.

The other key thing is expectations. Obviously you need to have realistic expectations, if you expect to be pain free it would be tough to maintain that even if you had short honeymoon periods with each new dose increase. For me it came down to how many side effects was I willing to put up with. Once my head was clear I was less and less wiling to go back to the way things were. Being disabled and a shut in due to pain, med side effects and disablity is hardly what any doc would call improvement other than the patient doesn't complain as much.

Hopefully you will be able to do something positive with your new found relief. I do belive we have an obligation too. It's not just the docs job to give us as much as we ask for to reach a level of relief. Once that level is reached it's our job to improve our own situation, whether it's excercise, getting out of the house or simply finding something that makes you feel better about yourself, that part falls on the patient.
Good luck, Dave

tortoisegirl 08-05-2012 11:21 AM

Re: How often to take methadone
Thank you! Glad to hear I'm not the only one where this is more of a short acting med. Still, its by far the best med for me (unless I was wanting to trial even higher doses of other meds). Yeah I've been taking the first dose right when I wake up (30mg), then 20mg every four hours until the last dose right before bed. I think I'll try moving the last dose from 20mg to 30mg since I have an extra pill. In time when i can tolerate it I'd like to go up a bit more too.

I'm lucky in that I seem to get very few side effects. I think it actually improves my mood...I know with less pain I am in a better mood, but even when my pain levels are higher on it, I feel more like my old (pain free) self. I seem to only have the issue with nodding off while driving, but I'm on Ritalin for hypersomnolence now (needed even when not on methadone), so it hasn't been a problem.

Although now that I am taking it throughout the entire day, I can't tolerate any alcohol without nodding off (yes I'm very careful). Oh well. My brain works much better on these meds then off. Since my pain is headache, I just can't focus when the pain is pounding. I actually was having a workout regime when previously on methadone, and had to give it up while trialing morphine and then fentanyl, but I want to get back into it. I'm only talking about 20 minutes on the elliptical a few days a week though...

I do hope I can maintain this and improve on it. I was stabilized on methadone for a couple years before my relief waned a bit, and then continued to decline as my doctor wouldn't increase the dose. I think two years is quite reasonable between increases.

My goal is to get to 50% relief and have my pain levels more evened baseline pain has wide swings though, so its tough. Plus, my tolerance. Hoping my recent bt med quantity increase will help too, although its at half of my previous dose. If the methadone is at the right level it could work. I agree how important it is to have reasonable goals. I'd like to open up a conversation about a pain pump with my doctor but am waiting for the right time. I don't think we've quite yet reached that point where we are at a standstill with ideas. I could really see myself doing well on a pain pump with methadone though. Best wishes.

GaNeal 08-06-2012 04:24 AM

Re: How often to take methadone
I take 50 mg's in the am followed by 50 mg's in the pm...Mine works about 6 hours for pain usually I take the pm 50 mg's 6 hours early like around 2 pm...then I wake uparound 5am and take 50 mg's...My dr will not go up anymore on the Methadone. He actually did not want to move me up from 90...actually when I started on it he said he did not want me past 50 mg's a day...well 2 years later I am at 100mg's /day,,,but yes my dose goves about 6 hours of pain relief...and my Dr swears it is suppose to give me 12 hours... at least...

In another unrelated note...has anyone run out of thier methadone a day or two early? did you start going into withdrawels...I never run out early but this month I have...I took my last dose saturday night and was scared to death because I have heard horror's been 2 days and I am still okay..I just have to hold out until tomorrow and I can get it refilled...I hate having to deal with pain life use to be so much easier before my back went to he$l!

tortoisegirl 08-06-2012 09:18 PM

Re: How often to take methadone
Sounds a lot like me! My old doctor had me stuck at 60/day for a long the time I thought it wouldn't work if I took less than 30 at a time (now I think it would have, but would need to build up in my system), and lasted for 6 hours top, so I took 30 at a time spaced 6 hours apart. After a lot of complaining I got to 70/day, but that was it. I am doing so much better now on 100-120/day. I seem to be reading a lot online of people taking it every 4-8 hours.

You may try splitting it to take 25 every 6 hours. Give it up to a week to stabilize in your system. I have recently realized that taking it twice a day six hours apart is more like taking it as needed...although it has that long half life and is stable in your system, the pain relief life isn't built up that way. You may find taking 25 at a time the first few times or even the first few days doesn't help much, but after it builds up so that the pain relief is steady, you may find your pain is better controlled.

Or, maybe not. It may be worth a try if you haven't. I never gave my previous trials of splitting my dose a full week each, as my doctor never mentioned it. He was quite ill informed about how methadone first he told me I should only need to take it once a day! lol This may be something to talk to your doctor about first as some would consider it changing your dose. I plan to discuss it with my doctor but haven't been in yet. For me, I didn't have much of a choice but to split it as taking it as prescribed (40mg tid) was making me ill.

I am able to go 24 hours without methadone before withdrawals. Some folks will get them earlier or later. I know this because with my old schedule sometimes I would take it 5am & 11am on Friday, and then sleep late Saturday and wake up in withdrawal. It is a really bad idea to take more than prescribed as you run into issues like this.

Plus, a lot of us get UAs and if they don't show the full amount in your system, you are SOL. However, if you do end up short for whatever reason, you are better to taper off and split your remaining pills to prevent going from full dose to no dose back up to the full dose when you get back on it.

Pain management doctors can be especially keyed in to the symptoms of withdrawal to identify med abusers, so I'd be careful at your appointment (anxious, sweating, etc). You may even want to come clean to your doctor. I'd be surprised if you can go from Sat night to Tues without withdrawals, but it does have a very long half life and everyone metabolizes it differently. If you have a breakthrough med that could help. Best wishes.

Shoreline 08-07-2012 01:08 PM

Re: How often to take methadone
Hey Tortoise, Unfortunately they cant put meth in a pump. It has to be water sauluable and preservative free and for whatever reaon methadone isn't on the list/ Morphine, Dilauadid, Fentnayl, sufentanyl and Prialt "cone snail toxin" Along with some other adjunct meds, like marcain,. Baclofen along clonodine. Basically what happened to me was I need an increase in meth and I went from 120 to 140mgs a day and I just hit a wall as far as not being able to accomadate or tolerate the side effects and since I didn't have script insurance going back to kadian or even MSC wasn't an option. That pretty much sealed the deal for the pump. Im sure some day I could potentially hit that same wall with the pump but so far I have been able to go years between increasses and on dilaudid since the second year. I triied bupivicaine and we added a little clononodine to the mix last year but it has it's own set of side efects like the marcaine. We all just have to decide what we can tolerate as far as side effects in exchange for relief. I didnt want my daughter to grow up with me knodding off on the couch all the time and I doubt my wife would have been to cool with it. Their are other things when you hit high dose like urinary retention, constipation and and I'm sure you are aware of the rest. I have found that plain old herbal "cascara segrada" is the cheapest and easiest way to manage constipation. It's cheap and easy to take a capsule a day and it's the primary ingredient in all the high dollar colon cleanse produts.

It's great your working out, Ive slacked off for a month or so, working 2 days a week has been kicking my backside, the only thing i can think of to make it easier to get through a 8 hour day is get back in shape and excercise. Its pretty impressive how quick you can get back to where you were, i can usually do it in a week but then pushing past that is the hard part.

What I meant by the 4th dose carrying me through the night was each dose seemed to build upon the previous, if you dont to long between doses. So after 4 dosess I could go 8 hours through the night and not wake up in horriable shape. It is dosed every 4 in hospice or for severe pain.
take care, dave

tortoisegirl 08-07-2012 08:58 PM

Re: How often to take methadone
Kat was telling me that in the past year some doctors started doing this, and I seemed to find some very limited info on it, but yeah definitely doesn't sound widespread. Den't some doctors only use morphine or prialt since those are the only ones FDA approved for intrathecal use Previously I had also only read those same meds due to the water soluble thing. Not sure how they have bypassed this? I could see a lot of hurdles for me in this...even ignoring the insurance/cost, finding a doctor in my area to do it, and weighing the risks/benefits, there is my age and condition.

I'm only 26. For headache most doctors won't even use pain meds. Never heard of anyone with chronic headache getting a pump. I'm not sure if the pump can work on it? I hear mixed info of whether its only for back/leg/neck pain or for all types. I've definitely got the exhausted all reasonable options covered though.

I was really considering trialing a nerve stim but I haven't found any local doctors who I have a level of comfort with their experience who would do it. One referred me to a Dallas doctor who does a lot for headache but I don't have out of network coverage. My own pain doctor does them but since I failed a supraorbital block he now doesn't even want to do the trial. A local doctor would do it but I wasn't comfortable with working with him...for one thing I would have to get off all pain meds before they would submit the pre auth to my insurance for the trial!

Yeah I got what you said about the lasting through the night thing. I've found the same thing...for me it seems very important to stick to my 4 hours schedule, as if I get an hour or two off, then I end up skipping a dose since they would be too close together. Plus, 30mg instead of 20mg at night seemed to get me a lower pain levels upon wakening. I'm not getting over the feeling that I'm wasting the meds since I don't need them to sleep through the night, but it keeps my levels steady and I am now prescribed enough to do this. I'm actually doing really well at the moment. Meeting my 50% goal and its fairly steady...although that last hour before my dose is due is quite reduced relief. Hoping it lasts.

Yeah I have definitely got more side effects with higher doses, but haven't hit that wall yet. Its a scary thought to think that all of a sudden it can pop up though. Not much you can do besides keep doses to a minimum I guess. Seems like few doctors perform adjunct meds with orals which could help minimize tolerance. I read here about Namenda and its NMDA receptor antagonist properties...funny thing is there are some case studies that Namenda has helped a few folks with the headache condition I have. Thanks again! Best wishes.

GaNeal 08-08-2012 06:38 PM

Re: How often to take methadone

[B]Pain management doctors can be especially keyed in to the symptoms of withdrawal to identify med abusers, so I'd be careful at your appointment (anxious, sweating, etc). You may even want to come clean to your doctor. I'd be surprised if you can go from Sat night to Tues without withdrawals, but it does have a very long half life and everyone metabolizes it differently. If you have a breakthrough med that could help. Best wishes[/B].[/QUOTE]

Hey Tortiosegirl! I worry about that alot,but in my case My Dr. Gives me 3 scripts of methadone...all dated the day of my visit... he tells me to wait 30 days to go back for another month..I only see him 3 months..He says per DEA I often wonder if this is on the "downlow" or not..However I went 3 days without any methadone and I will not say I was feeling great,but I was able function...I also tale 900mg's of Lyrica and I hear that helps opiate withdawel... One thing if for sure...I am going to not run out again next month!I am going to write down every time I take a dose so I can keep up with it better!!! ;)

tortoisegirl 08-08-2012 09:34 PM

Re: How often to take methadone
Glad everything went ok! You are really lucky you seem to metabolize slower than average. I am known to be a really fast med metabolizer...pain meds last me about half as long as advertised, plus I easily go into withdrawal. Some doctors see patients every few months and date the scripts the visit date but have a "fill on/after" date in the text. Some have the patient call on months they don't need to be seen to come pick up a script. I've only had doctors do the second, but my doctor said he'll do the fill on/after date if its for meds are due the next week, instead of a month out.

I believe those are both acceptable methods to the DEA. Even without a fill after on/after date, if he writes how many days the script is for (or its obvious, such as take 3 a day and its for 90 pills), I don't think the pharmacy would fill it before it was due anyways. A lot states have a linked system for controlled substances now, plus most folks getting these meds are on contracts to use only one pharmacy.

Writing down when you take your meds is a good idea. Another is to put your allotted pills for the day at the beginning of the day in a separate labeled bottle, such as in your purse. That way you don't carry a lot around either. My pharmacy will give me a duplicate bottle, or else I'll keep the full amount in an older bottle at home. Best wishes.

Shoreline 08-09-2012 12:15 AM

Re: How often to take methadone
Hey tourtoise girl. My wife has used Nemanda for 7 or 8 years. Along with Botox and occiptital blocks for her Cervicle headaches. She has been able to reduce her dose of MSC by 2/3 rds thanks to the adjunct meds and a very skilled doc with a needle. Her neck is a mess, :( reverse lordosis, bulging discs , cord and nerve compressions, stenosis and spurs along with a chiari malformartion which fortunately hasn't required surgery. Some adjuncts may provide no relief and some can be extremly effective for some individuals, She has only had 1 slight increase in BT strength in the last 7 years since she dropped from 100 TID to 30 TID of MSC. I do believe tolerance can be managed and I would give Nemanda a shot before increasing my own dose if it wasn't such a finiacial issue for my situation. with the doughnut hole. But if you have good insurance by all means give it a try, the botox has also been a lifesaver, Her neck is like a human clock and knows when it's beenn 12 weeks and time for more botox. The whole back of her head was literally numb for 2 days after the last block and round of botox and she feels jipped when she doesn't get to be numb for at least a day. Anyway, it sounds like you still have room and options and I wouldn't worry to much about what your dose is. I know the conversion for me back to orals would be pretty hefty but I haven't given my tolerance a thought other than should they ever have to go back in to fix something and that will only happen if a screw or rod pops through the skin or it effects nerves that control something important. Otherwise dose is just a number What's high to one doc may be a starting place for another. I'm glad you found someone willing to work with you. Take care, Dave

tortoisegirl 08-09-2012 09:46 PM

Re: How often to take methadone
I haven't had a doctor will to prescribe it or some of the more off the wall meds yet (lack of familiarity with potential benefits, higher risk of side effects than some of the first line treatments, etc). But, I'll give my new pain doc a try with some of my ideas now that my long acting med is finally stable. I haven't had any luck with the usual stuff they use as adjuncts for chronic pain, known as preventatives in the headache world. Topamax, Amitriptyline, etc.

Thankfully insurance is one thing that isn't a worry now. Brand name meds up my costs, but they are do able as long as it not more than a couple a month. Better to no be relying on them since plans easily change though. I'm on a ton of meds though. I really with the Botox helped me. Hopeful for the temporal block I have next week. For my neck, I seem to really minimize the issue with good posture, stretching, massage (every 2 weeks, insurance covers it), and Zanaflex every night. The headache is another story though!

Yeah I agree with you on the dose thing. I also know that I am happy to do what it takes to keep me working now, because its very unlikely with all I already have going on medically at 26 that I will work up to a normal retirement age. If I wasn't working I could probably manage ok without the meds. I did so for the first few years of the headache. I know I am doing the best I can to minimize my dose and try other treatments. I'm the one usually asking doctors to try more, not refusing stuff and only wanting the pain meds.

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