[daylilyfan]

Saw the PM a few days ago. I am usually treated by my PCP, but a few months ago, decided to try the PM route. I saw this doc almost 5 years ago for diagnosis, then again in November.

When I saw her earlier this week, I was having a terrible day. The drive up was bad, it was cold and so I was in more pain, low barometer, etc. plus still having pain issues from that darn antibiotic 10 days ago.

My hand was 15 shades of purple and ice cold when she saw me, and I was fighting tears.

She put me on 10 mg tablets of methodone, as needed. Told me if I have a good day, don't take it. On a bad day, take up to three. Take it for a month and come back to see her.

I took one the next evening, and finally - something that helps! I have fought taking pain meds for so long. Now that I am not working, I don't drive as much, so feel a bit better about it.

They said I could cut the tablets in half and see how that does. So, yesterday I took half of one before I did any housework etc. Sure worked better than two vicodin.

She said it was safer than taking all the aleve etc. I was taking, and if I take like directed, very little chance of becoming dependent.

She is also going to try to get my insurance to OK ketamine infusions.

And, she said for me to try for disability. Said she would write a good letter for it when they contact her. She said my muscles in my upper back and neck were so tight, she didn't know how I get anything done, or even move my head. She said I must be one tough lady

Told me use the TENS more on those muscles, take baclofen too.

Any thoughts on using methadone "as needed" ???

Is there anything I need to know about this medication? I did look back through a bunch of posts about methodone, and seems that it is one med that really helps RSDers.

Thanks!

[AintSoBad]

Hello DLF,
I've been on methadone for about 20 years. For myself, it's inexpensive, and has minimal side effects. I wouldn't change to any other med, and I've tried lots of them.

PRN though, (as needed), is not a great way to go, is my personal opinion.
I think you should try something like, breaking them in half, and try twice, 3, or 4 times/ day. Then, another half for breakthrough pain.
See if that's enough.

The average dose is 60mg/ day, and I've been at anywhere from 15, to 100mg / day.
Now, I do pretty well at 50/60 mg/ day.

It IS the kind of med, that will let you know when you forget to take it!
So, my suggestion is try a low dose, and use it as I said, with the extra for Break through pain.

I hope that might help you.
Feel free to PM me if you like...

Pete
asb

PS, it can be constipating, but, if you're active, and eat well and get enough fluids, it'll be fine. I do take a dose of Miralax everyday.
and all is well...

[gabbycakes]

Originally Posted by daylilyfan

Saw the PM a few days ago. I am usually treated by my PCP, but a few months ago, decided to try the PM route. I saw this doc almost 5 years ago for diagnosis, then again in November.

When I saw her earlier this week, I was having a terrible day. The drive up was bad, it was cold and so I was in more pain, low barometer, etc. plus still having pain issues from that darn antibiotic 10 days ago.

My hand was 15 shades of purple and ice cold when she saw me, and I was fighting tears.

She put me on 10 mg tablets of methodone, as needed. Told me if I have a good day, don't take it. On a bad day, take up to three. Take it for a month and come back to see her.

I took one the next evening, and finally - something that helps! I have fought taking pain meds for so long. Now that I am not working, I don't drive as much, so feel a bit better about it.

They said I could cut the tablets in half and see how that does. So, yesterday I took half of one before I did any housework etc. Sure worked better than two vicodin.

She said it was safer than taking all the aleve etc. I was taking, and if I take like directed, very little chance of becoming dependent.

She is also going to try to get my insurance to OK ketamine infusions.

And, she said for me to try for disability. Said she would write a good letter for it when they contact her. She said my muscles in my upper back and neck were so tight, she didn't know how I get anything done, or even move my head. She said I must be one tough lady

Told me use the TENS more on those muscles, take baclofen too.

Any thoughts on using methadone "as needed" ???

Is there anything I need to know about this medication? I did look back through a bunch of posts about methodone, and seems that it is one med that really helps RSDers.

Thanks!

Hi,

I am very surprised on how your doctor told you to take the methadone. I have used methadone in the past and methadone is the type of drug that has to build up in your system before it begins to work. So taking 1 on demand is confusing to me, my PM doctor told me the complete opposite. I am not a doctor but maybe just question her on that. My RX told me the same thing. Yes, it does work and is inexpensive. I have come off it 2x's and it is a b...., with a capital B. It you watch any of the intervention type programs or Dr. Drew they talk about Methadone being on of the worst drugs to get off. So plesae just be carefull. We all look for the endall for pain relieve without really questioning the doctors. I have had RSD/CRPS II for 7 years have taken every drug under the sun, did ketamine inpatient 3x's, did a cryp......(freezing of the nerves),14 Stellate Ganglion Blocks, epidurals, PT etc. After 7 years of torture I am on the least medication then I have ever been on and I think I feel the best I can under the curcumstantces. MY PM Doctor has never kept the pain meds from me but he always talks about how pain meds will sometimes make the pain worse. He keeps me on a short leash and it way I'm glad.


Good Luck,

Gabbycakes

[dreambeliever128]

I take my Methadone as needed. I took half of one this morning because my pelvic pain was driving me nuts and it has cut the pain down to almost nothing. My Dr. knows I take it this way.

If it's working, go for it. As far as building up in your system, I don't believe it has to build up in your system because it does cut the pain pretty quick.. If your pain is constant you might want to take it regulary but if it's intermittent why take it constantly? I use the Methadone, Lidocaine patches and shots to calm down my pain. Mine hasn't been constant like some peoples have the past couple of years.

I'm glad it's helping you.

Ada

[mrsD]

Hi, I'm going to link to two of my older posts about methadone, in case you didn't see them:

http://neurotalk.psychcentral.com/post15298-4.html

http://neurotalk.psychcentral.com/post148705-8.html

There are two major things you should understand about this drug:
1) it can affect the heart....as I explain in the first link. Some doctors today, still don't know this. Methadone is the only one of the opiate family that can cause long QT problems.

2) Methadone is long acting. And the time it sits on the pain receptors is shorter than the half life. So pain relief is gone before the drug is safely cleared from the body. That means that taking doses too close together, may build up and 1) interact with other drugs you may be taking, or 2) put you into a toxic level. Taking 30 milligrams all of a sudden, may not be a good idea, if you have not been screened with a Cardiac EKG and are taking drugs that may add to the QT problem and be additive with methadone.

However, many pain patients do well with methadone as long as the safety precautions are observed. Some of our PN patients here use it, and typically low doses suffice for the most part.

Methadone is inexpensive compared to other opiates, and is also preferrable for that reason. Low blood levels of magnesium and potassium can throw a person into a long QT event, even if they test normal on an EKG. A bout of stomach flu with vomiting and diarrhea may make the methodone more dangerous, in other words.

So please do read my other links. I've been posting about this for years, for the safety of patients, whose doctors are not currently informed about long QT potential and this drug.

[daylilyfan]

thanks everyone for your replies.

I wanted to ask about it, mainly, because I did not see others posting about using it as needed, but seemed to be on it regularly.

This is a well known PM with years of experience with RSD patients - there must be a reason she prescribed this way.

I go back to see her the end of May. Will see what she says then.

[RNcrps2]

Hi. When my generalized RSD flared nothing was helping until pm Dr. put me on methadone. I was told it is 10X stronger than any other narcotic, it does take time to build up in your system, it can cause respiratory depression if put on a too high dose too quickly, if you come off it it takes 2-4weeks to come out of your system(most narcotics clear in a few days) but since it takes long to come out of your system the withdraw is not as bad. I called it my miracle drug I was put on 5mg then up to 10mg/day. I don't like narcotics(I am afraid my body will get use to med and wont work when i need it) so after a few months the Dr. has slowly taken me down. I did have horrible sweats and skin sensativity for a few weeks. My flare has calmed down but it is great to know if pain gets out of control I do have something that will help. I would really do research because I did and never found that you could take methadone as needed its too dangerous. momof4

[daylilyfan]

I have been averaging a half pill (=5mg) every other day or every third day. Last night was bad, so I took a whole pill (10mg) and had the worst nightmare I have had in years. I never remember dreams anymore, and I think it is because I do not get into deep enough sleep to get to REM and dream. Anyway, I woke up with my service dog licking my face. I must have been calling out or otherwise distressed because she has never done that in the year I have had her.

It does seem to help. Especially the burning.

However, now I know what everyone talks about with pain meds and constipation. I am taking colace (sp?) stool softener twice a day, but still am having problems, even with the small amount of methodone I am taking. How in the world do you all cope with taking these meds regularly? Doc also prescribed milk of magnesia and I had to resort to that a few days ago. I eat a lot of fiber and plenty of fluid, so that is not the issue.

I will continue to try to adjust to the methodone, as it is the first medication that has really helped me with the pain - some meds barely take the edge off, but this one does help more than that. When I go back to the doc in 3 weeks I will talk to her about using it as needed instead of all the time - why she wants me to do it this way. I am thinking it is because I have not been on strong pain meds for very long in the past, and it is a way for me to get used to it. Not sure though.

Thanks for the feedback everyone!

[mrsD]

Just to clarify.... it is the big jumps in dose... like you stated in your first post. 10mg now and then, and 30 if you really need it.

It is the 30... bit ... that is concerning. If you stay in that lower realm you should be okay (if you don't get dehydrated or low in potassium and magnesium) and if you had a starting EKG showing no genetic long QT problem lurking.

Constipation is dealt with by using magnesium supplements, and certain fruits like dates and prunes. There is a fruit paste that appears on the net now and then to cope with this.
Other options are Dulcolax (biscodyl)-- read the labels, as there are many Dulcolax's now . Or Miralax occasionally. Drinking more water when you use a laxative helps considerably. Soluble fibers like Benefiber work for some too.
But high fiber interventions may lead to impaction, so be careful with bran, or other fibers.

[smallfry]

Originally Posted by daylilyfan

Saw the PM a few days ago. I am usually treated by my PCP, but a few months ago, decided to try the PM route. I saw this doc almost 5 years ago for diagnosis, then again in November.

When I saw her earlier this week, I was having a terrible day. The drive up was bad, it was cold and so I was in more pain, low barometer, etc. plus still having pain issues from that darn antibiotic 10 days ago.

My hand was 15 shades of purple and ice cold when she saw me, and I was fighting tears.

She put me on 10 mg tablets of methodone, as needed. Told me if I have a good day, don't take it. On a bad day, take up to three. Take it for a month and come back to see her.

I took one the next evening, and finally - something that helps! I have fought taking pain meds for so long. Now that I am not working, I don't drive as much, so feel a bit better about it.

They said I could cut the tablets in half and see how that does. So, yesterday I took half of one before I did any housework etc. Sure worked better than two vicodin.

She said it was safer than taking all the aleve etc. I was taking, and if I take like directed, very little chance of becoming dependent.

She is also going to try to get my insurance to OK ketamine infusions.

And, she said for me to try for disability. Said she would write a good letter for it when they contact her. She said my muscles in my upper back and neck were so tight, she didn't know how I get anything done, or even move my head. She said I must be one tough lady

Told me use the TENS more on those muscles, take baclofen too.

Any thoughts on using methadone "as needed" ???

Is there anything I need to know about this medication? I did look back through a bunch of posts about methodone, and seems that it is one med that really helps RSDers.

Thanks!