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Avatar universal

Methadone Withdrawal..Ultram instead for pain.

To: everyone
Hello all. I'm a stage IV cancer patient and I've been using methadone for about three years after going through all the others to treat my pain. Thankfully I've been in remission all that time, but I've still had pain from the cancer, which was in my spine, as well as the drugs I take to prevent the cancer from coming back. I've managed to get myself down to 30mg methadone per day, I use vicoden for breakthrough pain, but I've hit a wall in terms of reducing my methadone dose. Anyway, I went to Sloan Kettering to see a pain specialist, who recommended slow tapering over a period of months to get off the methadone, and using Ultram to deal with the pain. I've wanted to get off the methadone because I believe its side effects are making my quality of life worse. I get terrible hot flashes which are primarily caused by my cancer treatment but I believe are worse because of the methadone. I sweat terribly, have trouble sleeping, am incredibly intolerant to heat and get short of breath sometimes when I exercise. I know the methadone is making all these things worse if not causing some of them. I wonder about the Ultram though. My research indicates that the two drugs are quite similar in many respects, and the Ultram even has some of the undesireable side effects I've been trying to get rid of. Does anyone have any experience with using this drug? Truth be told, I want to get off it all, although I don't really know if that's possible. Bottom line, I hate the methadone and MUST get off that. I would appreciate any input. It's been helpful to read all of theses posts because I thought perhaps I was insane because I just haven't been able to get below 30mg. My doctors don't seem to have any kind of response to that problem (my docs here anyway). They make me feel like I shouldn't be in pain in the first place and getting off the methadone should be a breeze.That's another story entirely...don't get me started.

The aches and pains I get when I go under 30 mg per day just make me crazy though and I am unable to function.  I'm considering not using the Ultram and maybe just using the vicoden as I taper down. I think I can get by using small doses of the vicoden for pain throughout the day. I used to use it pre-cancer for a nerve intrapment I had and I was able to use it without going up in dosage or developing an addiction, over the course of several years. Anyway, how long do you guys think it will take for me to get off the methadone? What kinds of problems can I expect as I taper down? Whatever you can tell me would help. God fobid the doctors explain anything! It should tell you something that I had to go all the way to NYC to get help with this problem, even though I live in a relatively large city! Also, my psychiatrist who happens to be an addiction specialist (I have no addiction but he handles the cancer patients at the hospital where I"m treated) suggested using suboxone. Any opinions on that? I'm not really of the school of using one drug to help get off another, but if I have to resort to that I will I suppose.

thanks

Lisa
10 Responses
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Avatar universal
Lisa, I too am stage 4, have issues with all meds and the damnable side effects. Cancer don't care, neither does the gov't or the insurance / pharm. corps.Feeling depressed and more of a patient rather than a person. A lot of this stems from insufficient sleep, ongoing & escalating pain, and just being disgusted with the entire situation. I'm still adjusting to not being able to think ahead, plan things, and be positive. My medical folks are really failing at providing well reasoned and beneficial advice. Don't misunderstand, these guys are the tops at what they do. I research the docs on Health grades and these guys are the best in our county. They're smart, intelligent, well schooled, been to cutting edge referrals at U.C. S.F.. Unfortunately, they don't really understand my illness, cancer. They have studied, and they're hugely experienced. There just hasn't been a concept to solve the riddle, no unified theory that applies broadly. They are chipping away at it and there is major strides in many types of therapy. But I'm a dark horse, my c is not popular, not sexy enough. So far I've been told I'm stage 4, a dirt nap candidate. 12 weeks later the same Doc says, "Well you may be ok after all". Seems I'm well past the time where the c picks up momentum, metastasizes,  spreads & snuffs you. Sounds great don't it, I mean the "being ok" part? So why all this pain? They are at a loss to say. Mostly hems and haws about post surgical problems. My confidence in they're ability to accurately chart my heath, and treat me beneficially, well it's pretty minimal. I firmly believe that the decisions I've made ( to forgo chemo, take meds like schrooms and weed ), I think that's why I'm doing as good as I am.
Please research medical marijuana, it's been a great help in my pain management. It really helps mood, outlook, and may help eliminate the toxic side effects by reducing your need for pharmaceuticals. I don't smoke it, I make & take '00' capsules. All I can say is it works for me. The greatest lesson I've learned is TAKE CHARGE. Do your own research. The Docs know a lot but they've " drank the kool aid ".         ............lee
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Avatar universal
hey....wow you could be a spokes person for methadone pain management....I to started out on it for pain management 40mg a day and at first it worked wonderfully
but as it went on my body built up a tolerance to itand slowly my dose over the yrs
increased to 150mg going up 5 to 10mg at a time every few mo .....as for the symptoms of withdrawals....they are many ...first I noticed an uneazyness feeling like anxiety
but stronger then there's the body aches you just sorta hurt every where especially
in your joints also there is little chance of restful sleep and ressless leg syndrome
you sorta feel like you  got the flu....im shure ive missed a few and others here experence different things OOO  I got mind bending head aches and panic anxiety
I hope i answered some of your questions if i can help in ann way just ask...if you put your cursor over my name you can message me and i will get back to you asap
good luck and god bless ...Gnarly        
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Avatar universal
A bit of information for anyone using methadone that has to have surgery:

Many anesthesiologists and doctors/surgeons are unfamiliar with the proper equalanegesic dosage of morphine for patients on methadone maintenance, or using methadone for pain. As a result, they make the mistake of giving you too little morphine when they are using that in place of or in addition to your methadone dose for pain. Sometimes they even think that the methadone you normally take will help address your post-surgical pain. This is in fact NOT the case at all. You will need to get your normal methadone doses, provided using the EXACT same schedule you normally use, in addition to post-surgical pain management medication. Your regular methadone dose will not affect the additional post-surgical pain you have at all!

So, if the hospital you go to do does not provide methadone in the IV form so that you can use that for your regular dose and your post-surgical pain management (which is preferable) or if you can't take your pills, you are in for a terrible ride unless you take the proper precautions. There are so many different reference tables out there for doctors to access regarding what is the equalanalgesic dose of morphine for methadone that often times the amount of morphine they provide in lieu of, or in addition to your methadone is insufficient to cover your pain. As you all know, you will have develped a tolerance to opiods having used methadone (or any other opiod) for a long period of time. Thus, you will need more morphine (or whatever other opiod pain med they offer) than the average bear, quite a bit more. In addition, certain medications compete for the nerve receptors that methadone bind to and therefore can create a situation where their use attenuates (increases) the efficacy of the methadone for pain managemnt. One such medication is Effexor. If you are taking one of these drugs, and it is not provided to you on your regular schedule while recovering in the hospital, your methadone dose will not necessarily cover your pain the way it would if you were given the secondary drug (as you should). This can trigger the process of withdrawal, which does take time, but it can also trigger increased pain. Despite the fact that methadone has a very long half-life, which is the argument used by health care practitioners to support their belief that missing a dose is not a big deal, the duration of its anelgesic effect does not correlate with its half life. Put in more simple terms, if you miss a dose, you will experience pain even though technically you are not in "withdrawal" quite yet, although the process has begun. Anyway, I hope that makes sense.

Some nurses (and doctors) are not at all aware of this and take their sweet time getting you not only your regular methadone dose, but your secondary drugs, being oblivious to the effects that not receiving those secondary drugs can have. Also, as I indicated before, once they see methadone on your list of meds, assumptions are made and your complaints of pain may be interpreted as seeking behavior.

The best possible situation is if IV Methadone is used to cover your regular dose and manage your post-surgical pain. However, as long as your surgeon knows what he is doing, you should be OK. If you have a surgery planned, my suggestion is to insist that your surgeon speak to a pain management specialist who is very familiar with the use of methadone in the post-surgical setting and understands these nuances of the drug. If you don't have access to such a pain specialist, then ask the doctor to consult with the head pharmacist at the hospital prior to your surgery regarding a post-surgical pain management plan. The hospital pharmacists are much more informed about these things. Since I've had some really bad experiences after surgery while using methadone, I ALWAYS have my surgeon contact the hosptial pharmacist well prior to my admission to work out a post-surgical pain management plan, and I insist they share it with me.

I hope this information helps you guys. If you google "methadone in the peri-operative setting" you will find an article written in 2005 which will give you more information on this issue. You could print it out and hand it to your surgeon, which is what I did.

One final thing. If you have been on methadone at high doses for some time, there is the possibility of your developing a condition called hyperalgesia. Basically this means that your neurons have changed over time so that you experience pain at a much lower threshold than someone who had not been using the drug. This is definately something to watch out for. There's conflicting studies out there about whether or not the use of low doses of methadone can also cause this kind of reaction.

Anyway, I just thought I'd clarify that a bit since I mentioned it in my previous post. I'd hate to see anyone go through the kind of pain I did after a surgery due to lack of information.

Again, thanks to all for your support.

Best

snooch
Helpful - 0
Avatar universal
Oh yea,

Gnarly, my GP and I agreed that it's better to go without the Ultram if possible. She's allowing me to use the hydrocodone for breakthrough pain. I used it for several years prior to my cancer diagnosis for pain mangement of my thoracic outlet syndrome and did not have any problems with addiction. I only used it once or twice a day, broke a 5/500 in half whenever the pain got hard to handle. Hopefully that will work since the hydros don't have all of the potential side effects of the Ultram. Unfortunately, I have severe reflux disease so I can't take the NSAIDS. I had a surgery for it ten years ago, which helped a bit, but I still have problems with it.

You know, I just wanted to let you all know that since I've been taking opiods for my cancer pain, I've had the dubious experience of being treated like an "addict" by some people and health care practitioners. (Some have assumed without looking at my medical history that I am an addict since I take methadone.) This occurred post-surgery once, and it was just unbelievable how horrible the experience was, being denied proper pain mangement. There are LOTS of health care practitioners out there that know nothing about methadone, it's proper dosage, uses and potential side effects both in and out of the post-surgical setting. It's just not right! I'm so sorry that all of you have to put up with that. I encourage all of you to speak up, to continue to assert yourselves so that more health care practitioners will become educated about the use of this drug! It's so tricky and difficult to manage. No one should have to sufffer in pain like that! Had I known that when its use was suggested to me, I would have never agreed to using it, although my options for pain managment were limited. It was NOT the best choice for me. I think the docs just assumed I would die before any of it became a problem! Anyway, I know sometimes it is the best choice and is a useful tool for some people to help with their addiction or pain, but the stigma associated with it leads to all sorts of inhumane practices. I encourage you to educate yourselves as much as possible, as you all seem to be doing, about your medical choices, and take the opportunity to educate the people and health care professionals around you. It's a travesty that should not be allowed to continue!

Ok, I'm off my soap box...thanks again for all of your support!

L
Helpful - 0
Avatar universal
Hello Gnarly and Emwave, thanks for posting.

I just posted a reply using my Blackberry, but it didn't work, so here ai am typing it again. Damnit!

Emwave, thanks for that input regarding methadone and estrogen. Actually, my cancer is fed by estrogen, so my treatment involves preventing my body from producing estrogen. Perhaps the methadone has helped keep me in remission. I don't know, the docs have never said anything about methadone influencing estrogen production. Anyway, I had a hysterectomy in February and am on a medication called Femara which prevents the testosterone which is manufactured in your adrenal glands from being turned into estrogen in your breasts (which normally happens even if your ovaries are removed). So, I should be OK without the methadone. I don't doubt however that the methadone has contributed to the severeity of my post-menopausal symptoms. It helps to be validated by you with that information though. Where did you learn about the influence of methadone on estrogen production? I'd be interested in reading about it?

Gnarly,

I take 30 mg daily in three 10 mg doses. The Sloan doc suggested going down to 7.5 on one dose a day for a few days, then down to 7.5 for two of the doses and so on. I'm not sure how we'll adjust down after that, my GP and I will have to see how it goes. Thanks for your input, it sounds like I might have to go slower than that, we'll see!

It would be really helpful if you guys could tell me what symptoms exactly that you experienced with withdrawal. I have some other medical conditions besides the cancer which generally make me feel ******. It's hard for me to tell sometimes what is from the methadone withdrawal and what is from my other problems (severe reflux disease, pain from thoracic outlet syndrome in my arm, which is a nerve inpingement, arthritis, bone pain from cancer meds, shortness of breath on exercise, fatigue). Can you be specific about what withdrawal symptoms you've experienced? It might help me if I knew what to look out for as I get lower so I can identify problems as withdrawal related or not. I would appreciate it!

Thanks to you all for your continuing support. It really makes a difference. You don't meet many people with Stage IV cancer that want to get OFF the pain meds, so I don't really have anyone to talk to about this issue in the breast cancer communities online. It's hard to complain, I've been very lucky, and hope that will continue. I'm trying to restore the parts of my life that I lost when I got cancer, and getting off the pain meds will really help with that!
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Avatar universal
Hi and welcome.  I'm sorry to hear that you are going through such a rough time.  I did want to mention that certain opiates (methadone being one of them) lower estrogen levels.  It doesn't seem that many people know this, and women in particular tend to have a hard time getting off methadone, thinking that the hot flashes they get are caused by the wd when actually the methadone is making them worse.  So you may very well be right about your flashes seeming worse on the methadone.
gnarly is our resident "methadone wd man" -- he's helped many here (myself included).  Good luck and keep posting.
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Avatar universal
hi and welcome... wow a lot of people coming off methadone these days.....
well it sounds to me your sorta stuck at 30mg of done....it happens... happened  to
me a few times coming off 150 mg got stuck at 60 and 30 and 20mg seamed
hopeless was stuck at 20 mg for 6 friggin weeks it just takes time for your body
to adjust .....dont give up the fight to get off, try the 10% every 72hr thing it works
just stop for a week (5 days for me) when you start feeling the withdrawals the 10%
taper will work most of the time but you will go threw times of discomfort, youll feel
it for around 4 days when you get down to 10mg every time you drop I recommend
a 1 mg drop every week at 10mg and below...it might not sound like much but I felt
every drop for 4 days it was doable but difucult...im here to try to help you get free of this stuff but dont want to mislead annyone it is tuff in the end....but again doable
im 8 days clean and living proof you can do it...im still feeling the withdrawals but there manageable if I where you I  wouldn't do the sub thing its as bad as the methadone to get off of just start with baby steps mabe try a 1 mg drop to start with
you will get past the 'bump' in the road it will just take some time good luck and god bless ....Gnarly  
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1064938 tn?1255282319
Welcome we are glad you are here and we will try to help you in any way we can.  Although I do not have exp with the type of cancer you have, I do have exp with methadone. There are a few others on here as well that are a welth of knowledge as how to get off and taper off methadone.  Without going thru my whole long story that the people on here have heard a million times I will tell you that you can and I am sure you will be successfull at getting off the methadone.  I will not lie to you, it will take time.  Methadone is not something you get off with just a snap of a finger which I am sure you already know.  In the beg I was at 110mg of methadone a day I am now at 40mgs I will be going down to 30mgs tomorrow.  I do not recommend doing it the way I have done it but I will recommend doing it the way another person on here did it. (By the way that guys name is Gnarly)  He was on 150mgs and it took him 81/2 mths but his method is the way to go.  He got his advise from a nurse that weens babys addicted to methadone in the hosp.  So if it is safe for babys than I am sure it is safe for us.  Gnarly recommend going down 10% every 72hrs.  So you are on 30mgs you should only go down 3mgs every 72hrs or so.  Some people have to even go a little slower like maybe 10% every week or two.  I do not know anything about sub so I can not comment on that. From what I read on here it is just as bad as the methadone????  Also as far as the ultram goes I do not think that will help you at all for the pain and it is also addictive and a pain in the a$$ to get off of also.  I think you have the right idea taper the methadone and use the vics for the aches and pains????  It sounds good to me.  I just want you to know it can be done.  Gnarly will be on here soon and I am sure he will post to you also. Keep posting and let us know how you are doing we will be here for you any way we can
Sending my prayers, thoughts and love your way
Lisa
Jacksonville,FL
Helpful - 0
199177 tn?1490498534
Here is the problem with that tramadol it is addtictive after you have taken for pain if it even helps for cancer pain which i dont think it will  and to help to get off the methadone then you are going have to get off the trams it is not as bad as methadone but it makes hydro and percs feel like a picinic tram is nasty nasty to come off as well .
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Avatar universal
Hi Lisa! Congratulations on the remission! I'm unfamiliar with cancer and the pain it can cause but wanted to suggest the that maybe a pain management facility would be worth looking into? Some doctors just aren't all that good at dealing with and understanding patients with continous pain :(. I wish you the best *hugs*
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