Advice about methadone

[Basslady]

Hi everyone- I’d like to hear from those who have personal experience, or credible knowledge about the pros and cons of using methadone for chronic pain.

I’ve been in pain management since 2005, diagnosed with “fibromyalgia” and ankylosing spondylitis (a type of inflammatory arthritis). And in 2015 I was finally correctly diagnosed with late stage Lyme disease, which I had since 1995 (had the characteristic rash and kept the picture)
I’ve been on just about all the opiates, including the first 7 years on Fentanyl patches, which I would not recommend- very addictive! I was on 300mg/day morphine equivalent, and after 2 tough but successful years of Lyme treatment, I was able to taper down to almost half- 180 mg/day. But the damage to my nerves was done.
Plain morphine works best for me, confirmed by experience and genetic tests, but it causes intense anxiety in my chest in the mornings. I’m back on Nucynta again, which is insanely expensive and doesn’t do a great job with pain relief (also taking Lyrica)

Ok, after all the background info, I’d like to hear from those who can give me the pros and cons of taking methadone for what will be life long pain management. I would only deal with withdrawal if it causes the anxiety like morphine does.

Pros: effective pain relief? Little to no side effects? Able to find correct dose fairly easy?
Etc.
Cons: doesn’t relieve pain well? Intolerable side effects (what)? Difficulty in getting to the correct dose? Etc.
Thanks in advance, Trisha
And yes, I do play bass guitar

[backhurtz]

I have in the past and it is a difficult medications for many reasons.  
First is perception- I was on it along with fentanyl long ago - for chronic intractable pain.
I can’t say I found it very helpful as far as pain relief but not everyone feels the same way.
The use of methadone can be diffficult - it can cause heart rhythm concerns ( Prolonged Q-T syndrome) and severe respiratory issues. I developed the cardiac issue while on it and had to stop it.
It has a very long half life and can cause severe drowsiness even at the very low doses typically used in pain management. Because of its extended half life- breakthrough meds can be diificult to get the correct dosage and not cause over sedation or respiratory suppression.
It is also difficult to stop if taken for an extended time frame.
Methadone builds up in your system because of the extended half life so you must take it ONLY as prescribed and only in the amounts prescribed. A good idea to have someone keep an eye on you when starting it for a few days and if there is a dosage adjustment.
The lowest possible dose is what you want- more is not equal to more pain relief- it is a likely accidental overdose or respiratory arrest.
For those it works for- a single or twice a day minimal dose works great- but as I said- you and your drs need to be vigilant about ekgs and changes to cardiac rhythms or respiratory slowing.
Going off it can be difficult and not all doctors are familiar or comfortable prescribing it.
If you do decide to try it- make sure your provider starts you at the minimum daily dose -5 mg and adjusts VERY SLOWLY and carefully .

[Basslady]

Hey Backhurtz- thank you so much for taking the time to give me detailed response- and helpful. I’m headed to my PM appt in a few minutes where we may be discussing this. Appreciate you!!

[backhurtz]

You’re quite welcome- I hope you found an option you find helpful.

[Basslady]

I hope so as well- my PM appt yesterday went fairly well. We are trying another option, one Ive tried several times….so no methadone for now. Thank you again for your helpful info!

[GuitarRox]

We have different people who answer here including a community manager but sometimes they get busy. I think one of the issues with using methadone and really any opioid at this point is accessibility for the long term. No longer is it shined upon to use any opioid long term. Pain clinics and whatnot make it harder and harder. It's unfortunate because chronic pain is real. The down side too is propensity for addiction. And tolerance being built up and need for higher doses as you are on it to get the same relief as the lower dose you started on.  It's been studied more in short term usage rather than long term. You also need to monitor for other drugs used and interaction such as GI commonly used meds. The up side is that when it works, it works well.

Are you being referred for methadone treatment?

[Basslady]

Thanks for your reply and info, GuitarRox!
I’ve asked my PM about the methadone and she said she’d have to bring it up in a meeting with the MDs (she is a PA)
I’m not really referred, as I’m in pain management and they would be prescribing if we are going to try it.
Hey, I’m a bass guitar player- you must play guitar.

[stayfloating]

Con: Constipation king

[Basslady]

Hi stayfloating-  that is something  I manage every day for almost 2 decades, not always with good results…so thanks for the warning that it might be worse than other opiates -

[Basslady]

Apparently, no one had used methadone for pain management….

[stayfloating]

I have. Its short pain relief compared to its half life is why it’s used to help addicted users of short acting opioids. For pain relief this is a problem because u have a med that helps pain for 4 hours but stays in your system for 18ish. U do this over days and u can build up a lot in plasma levels. If u took every 4-5 hours you are compounding the last dose though the Pain relief is gone, hence the redosing.
It is a cheap alternative for pain control invented by Nazi scientists because of their need for morphine but low access to poppy fields and manufacturing. I’d leave it to the Nazis if I was you.

P.S. great to supplement a dose if you were titrating down but those scenarios are few and far in between.

Hope that helped.

[backhurtz]

The half-life of methadone typically is between 15 and 60 hours, although it has been reported to be as long as 120 hours in some patients.¹˒³ Other pharmacokinetic considerations for methadone include its absorption, distribution, metabolism, and elimination.

[backhurtz]

https://www.practicalpainmanagement.com/treatments/pharmacological/opioids/practical-guide-safe-use-methadone

[Basslady]

I appreciate all your advice and help! I was an ER RN so I do understand about the pharmacokinetics/half-life of methadone. It is a difficult med to titrate to target dose for sure. Thank you!

[Basslady]

In case anyone reads this, I started on the methadone end of June but within 10 days I was unable to eat, except for clear liquids (Gatorade, Jello, juice etc) it turned out the methadone caused gastroparesis and intestinal paresis, meaning any food was not moving - this went on for 6 weeks (for 2 weeks after I stopped the methadone) and is a rare but serious side effect. I lost almost 15 pounds but I wouldn’t recommend the method.