I've heard that some people are taking hydromorphone (Dilaudid) successfully for their rls. I am currently taking methadone and while it works wonders, I've been taking it for several years now and have almost forgotten the horrors rls used to inflict upon me
However there are several side effects that I would like to not have. Besides the low, low testosterone, there are some pretty severe breathing/heart problems from sudden exertion that I occasionally have that make me feel like I have been waterboarded and might not get my breath again.
Anyway, I go back to my dr next week and I was going to suggest trying hydromorphone. If you are taking this for your rls what doses are you taking. For my severe rls I'm taking 10 mg of methadone three times a day.
Thank you for your help.
anyone taking hydromorphone/dilaudid for their rls
Hi moss,
For what it's worth, I tried hydromorphone (Dilaudid) for my RLS and it didn't help me at all. But that's just me, of course. I've been very successful treating my RLS with oxycodone.
Given your long-term use of methadone, I'm not sure that switching to hydromorphone will be that simple - even if it successfully treats your RLS. Methadone is a very long-acting opiate, so unless you move to a slow release version of hydromorphone, comparing the two is like apples and oranges.
I suggest that you email Dr. B to ask about this switch. I think it should be handled judiciously. From what I've read, getting off methadone can be extremely difficult, especially when you've been taking it for several years.
On the other hand, methadone can carry some nasty side effects, so I truly understand your interest in seeing if something else is effective for treating your RLS.
But, you raise a very serious question. My concern is that if you try Dilaudid and it doesn't work, then the ugly beast of RLS rears its head and catches you off-guard since you haven't felt its horrors for some time. Then, in a frantic attempt to bring your RLS back under control, you take methadone on top of your Dilaudid. Suddenly, you're risking overdose. Remember, you will have lots of methadone still in your system from the previous days' doses.
I don't think this is a matter of simply switching meds with ease. Get two or three expert opinions before you try this - especially given your long-term use of methadone.
And I wish you every success!
tunesmith
For what it's worth, I tried hydromorphone (Dilaudid) for my RLS and it didn't help me at all. But that's just me, of course. I've been very successful treating my RLS with oxycodone.
Given your long-term use of methadone, I'm not sure that switching to hydromorphone will be that simple - even if it successfully treats your RLS. Methadone is a very long-acting opiate, so unless you move to a slow release version of hydromorphone, comparing the two is like apples and oranges.
I suggest that you email Dr. B to ask about this switch. I think it should be handled judiciously. From what I've read, getting off methadone can be extremely difficult, especially when you've been taking it for several years.
On the other hand, methadone can carry some nasty side effects, so I truly understand your interest in seeing if something else is effective for treating your RLS.
But, you raise a very serious question. My concern is that if you try Dilaudid and it doesn't work, then the ugly beast of RLS rears its head and catches you off-guard since you haven't felt its horrors for some time. Then, in a frantic attempt to bring your RLS back under control, you take methadone on top of your Dilaudid. Suddenly, you're risking overdose. Remember, you will have lots of methadone still in your system from the previous days' doses.
I don't think this is a matter of simply switching meds with ease. Get two or three expert opinions before you try this - especially given your long-term use of methadone.
And I wish you every success!
tunesmith
switching
Hey Tunesmith, thanks for the input.
I'm truly sorry to hear that dilaudid didn't work in your case. I have heard from several people who had used it successfully. I was wondering what doses they were taking.
As far as switching from methadone, there is a lot of mispreceptions out there about 'getting off' methadone. Actually I switched several months back to ocycodone (I had taken it for about five years but my doctor up at Johns Hopkins suggested the methadone because of its long lasting half life) without any noticeable effect. I find ocycodone much more intrusive mentally than methadone (that's why people take oxycodone to get high where they don't get those effects from methadone). Also I quickly realized why I switched in the first place from it to methadone -- the relative length of its analgesic effect (for me the 3-4 hours of oxycodone as opposed to the 8 solid hours of the methadone).
Where you raise your concern about switching from dilaudid back to methadone I think you might be confusing the dosage levels of the people using methadone as a substitute for herion ( from 70 mg to 150 mg per day) as opposed to people using it for rls (5mg-30mg).
I'm not sure what 'nasty side effects' from methadone you were referring to. I find the side effects from methadone much less nasty than drugs like requip and meripex, or for even that matter oxycodone. Though my experience today, and similar events I've had happen maybe half a dozen times in the past, were truly scary (and might not be a side effect at all but separate medical condition completely). What I'm asking here, though, is if there is a drug out there that has even less side effects, particularly I'm looking for a drug that won't interfere with one's ability to physically exert themselves.
Again, thanks for the input.
I'm truly sorry to hear that dilaudid didn't work in your case. I have heard from several people who had used it successfully. I was wondering what doses they were taking.
As far as switching from methadone, there is a lot of mispreceptions out there about 'getting off' methadone. Actually I switched several months back to ocycodone (I had taken it for about five years but my doctor up at Johns Hopkins suggested the methadone because of its long lasting half life) without any noticeable effect. I find ocycodone much more intrusive mentally than methadone (that's why people take oxycodone to get high where they don't get those effects from methadone). Also I quickly realized why I switched in the first place from it to methadone -- the relative length of its analgesic effect (for me the 3-4 hours of oxycodone as opposed to the 8 solid hours of the methadone).
Where you raise your concern about switching from dilaudid back to methadone I think you might be confusing the dosage levels of the people using methadone as a substitute for herion ( from 70 mg to 150 mg per day) as opposed to people using it for rls (5mg-30mg).
I'm not sure what 'nasty side effects' from methadone you were referring to. I find the side effects from methadone much less nasty than drugs like requip and meripex, or for even that matter oxycodone. Though my experience today, and similar events I've had happen maybe half a dozen times in the past, were truly scary (and might not be a side effect at all but separate medical condition completely). What I'm asking here, though, is if there is a drug out there that has even less side effects, particularly I'm looking for a drug that won't interfere with one's ability to physically exert themselves.
Again, thanks for the input.
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ViewsAskew
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Moss, so glad you had experience you could share with stopping methadone. One of the RLS docs told me that as long as we take it once a day, stopping it should not be a problem.
I only know one other person who tried dilaudid. I just can't remember what the results were. You could try searching on it and see if the posts come up. I also haven't a clue about the respiratory effects of one vs the other. All opioids depress your body to some extent. I've been on methadone for over two years - am now at 20 mg - and have no problems at all with exercise or exertion and breathing except when sleeping. Every once in awhile, I notice that my breathing is soooooo depressed and slow. Thankfully, that's the only thing I've noticed and it's rare that I do.
I'd second asking Dr B - somno@earthlink.net - and see what he can recommend.
I only know one other person who tried dilaudid. I just can't remember what the results were. You could try searching on it and see if the posts come up. I also haven't a clue about the respiratory effects of one vs the other. All opioids depress your body to some extent. I've been on methadone for over two years - am now at 20 mg - and have no problems at all with exercise or exertion and breathing except when sleeping. Every once in awhile, I notice that my breathing is soooooo depressed and slow. Thankfully, that's the only thing I've noticed and it's rare that I do.
I'd second asking Dr B - somno@earthlink.net - and see what he can recommend.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
From what I understand about Hydromorphone, I don't think any doctor is going to willingly give the stuff out on a whim.
One of te major reasons is that even though there are other "stronger" painkillers out there, the high associated with Hydromorphone is said to be, one of if not THE most desired out there. I think people have substituted it for Heroin when they couldn't get any, even when methadone was available to them.
In my eyes it seems like an extremely addictive drug that you may find yourself having a hard time getting. Its definitely always been up there on my personal list of "things to try if you ever get a chance".
Methadone is hands down one of the most effective and long acting opiates for RLS. It scores highly in all three categories for 99% of people who have used it.
1. Effectiveness - pretty much total relief.
2. Longevity - Near 24 hour relief between atypical doses.
3. Cost - methadone is extreely cheap. I get 90 for $12.95 out of pocket.
One of te major reasons is that even though there are other "stronger" painkillers out there, the high associated with Hydromorphone is said to be, one of if not THE most desired out there. I think people have substituted it for Heroin when they couldn't get any, even when methadone was available to them.
In my eyes it seems like an extremely addictive drug that you may find yourself having a hard time getting. Its definitely always been up there on my personal list of "things to try if you ever get a chance".
Methadone is hands down one of the most effective and long acting opiates for RLS. It scores highly in all three categories for 99% of people who have used it.
1. Effectiveness - pretty much total relief.
2. Longevity - Near 24 hour relief between atypical doses.
3. Cost - methadone is extreely cheap. I get 90 for $12.95 out of pocket.
Do you have experience taking hydromorphone for rls?
Thanks Susan. You said what I feel pretty well. In my case I'm working with a number of different doctors and specialists, some of them close to the top people in their field nationally. For me, as I imagine is true for a number of people on this list, rls is my life, it dictates every thing I do.
I was asking a specific question and I would like to see this thread to stay focused on so I could hear some first hand experience to that specific question.
I, too, have a number of other issues I would like to give my opinions on and have people discuss but to hijack a thread in the interest of discussing them seems to be less than kosher.
Again, does anyone have experience taking hydromorphone for rls? Could you please send your answer to me as a pm to make sure I get it. Thank you.
I was asking a specific question and I would like to see this thread to stay focused on so I could hear some first hand experience to that specific question.
I, too, have a number of other issues I would like to give my opinions on and have people discuss but to hijack a thread in the interest of discussing them seems to be less than kosher.
Again, does anyone have experience taking hydromorphone for rls? Could you please send your answer to me as a pm to make sure I get it. Thank you.
if anyone cares
I did go to my pain management dr today and we had our continuing discussion about rls and methadone. We've been discussing switching off of methadone on a trial basis for maybe a month to see if my breathing/heart events are methadone related. I started this thread because I was considering suggesting to him we try hydromorphone and I was asking if anyone out there was taking that for their rls and at what strength.
Well, we had our usual discussion today (the usual discussion goes 'well, do you want to switch to oxycodone and see how that goes?' and I answer, Ahh, not this month, I'm not up to experimenting when methadone works so well for my rls.')
This time I went in with Mackjergens thoughtful posting of the different painrelievers that work for rls and their dosages from the San Diego group's webpage and we went over the different drugs discussing their pros and cons and my doctor pointed out that hydromorphone was pretty short term and wasn't going to fill one of my requirements (I don't want to have to be taking a pill every 3 or 4 hours).
So we discussed switching to oxycodone either 10 mg or 20 3 times a day. And since I'm taking the 10 mg methadone I said we should probably try the 10 mg ocycodone.
Well, here it is going on 11 pm and my first day and evenings observation is that doesn't work anywhere near the methadone. I'm not in the excruciating pain I suffer from untreated rls but I sure feel the rls heavy enough. I don't think the oxycodone at that strength works anywhere near as well as the methadone. But that, of course, isn't why I'm switching for this trial. I'm looking to see if what I think are methadone side effects go away.
Moss
Well, we had our usual discussion today (the usual discussion goes 'well, do you want to switch to oxycodone and see how that goes?' and I answer, Ahh, not this month, I'm not up to experimenting when methadone works so well for my rls.')
This time I went in with Mackjergens thoughtful posting of the different painrelievers that work for rls and their dosages from the San Diego group's webpage and we went over the different drugs discussing their pros and cons and my doctor pointed out that hydromorphone was pretty short term and wasn't going to fill one of my requirements (I don't want to have to be taking a pill every 3 or 4 hours).
So we discussed switching to oxycodone either 10 mg or 20 3 times a day. And since I'm taking the 10 mg methadone I said we should probably try the 10 mg ocycodone.
Well, here it is going on 11 pm and my first day and evenings observation is that doesn't work anywhere near the methadone. I'm not in the excruciating pain I suffer from untreated rls but I sure feel the rls heavy enough. I don't think the oxycodone at that strength works anywhere near as well as the methadone. But that, of course, isn't why I'm switching for this trial. I'm looking to see if what I think are methadone side effects go away.
Moss
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ViewsAskew
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Moss, looking forward to hearing what happens. I just love to hear stories of docs working with patients, though I admit I'd be much happier if none of us ever needed a doc again for our RLS...or anything for that matter.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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SquirmingSusan
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rls doctor
I had to work a long time to get him to cooperate to this level. I think the most important step was to become a patient up at the Johns Hopkins sleep clinic. They have a number of doctors that specialize on restless legs. After seeing Dr. Earley and his student prescribed and recommended methadone it provided the confidence and yes education to the local doctor I see regularly about rls medication. Before becoming a patient up at Hopkins my local doctors didn't believe in writing prescriptions of opioids for rls. It's been a long process, unfortunately, with a number of quacks along the way.
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ViewsAskew
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Amen to the long process. But, glad it is paying off for you.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
I've stopped methadone now for almost a week and have been taking oxycodone cr 10 mg. First the good. (or I guess its good).
It sure appears that methadone caused the shortness of breath/heart problems that was confounding my various doctors.
Four days after stopping the methadone I had to get up at 5 am with a farm problem. got dressed for the cold and went outside and started up the path toward the spring (something had frozen). I found myself way up the trail (part way up our mountain) going fast before I realized 'hey, you can't do this, you are going to have an attack.' But I wasn't. I wasn't even out of breath. If I had tried this even three days before I would be doubled over, my heart racing, my lungs screaming for air. But this time, it was as if I hadn't exerted myself at all. Since then I have done a number of activities I hadn't been able to do for several years. (which coincidently was when I started taking methadone for my rls -- why hadn't I or one of my doctors thought to connect the two I don't know).
The bad news: oxycodone cr 10mg is not a substitute for 10 mg of methadone. Last night I was up walking every two hours. I took 10mg when I went to bed at midnight but I was up in pain on my right side, from my head to my toes and the twitches. I walked around for a while and then took another cr, walked some more, did some outside chores and then was able to go to sleep but I was up again in another two hours shortly after 4. Same thing. And then up after 6, more pain and twitches. It wasn't the every 20-30 minutes all night long I have without any medication but it wasn't good, especially after the relief that methadone has allowed me to experience. As long as I'm moving and working in the daytime a 10 cr seems to work for 8 hours, but it sure doesn't during my critical period.
Also oxycodone causes me to sweat profusely at night. I sweat abnormally with methadone but not so bad at night that the sheets are soaked. The sheets have been soaked since I started taking oxycodone again.
I called my doctor and made an appointment for next week. Maybe stronger oxycodone or going back to methadone.
What a dilemma. with methadone no rls symptoms but more or less for me physically handicapped.
Anyone else out there with acute hereditary rls taking oxycodone. What strength are you taking and how often?
It sure appears that methadone caused the shortness of breath/heart problems that was confounding my various doctors.
Four days after stopping the methadone I had to get up at 5 am with a farm problem. got dressed for the cold and went outside and started up the path toward the spring (something had frozen). I found myself way up the trail (part way up our mountain) going fast before I realized 'hey, you can't do this, you are going to have an attack.' But I wasn't. I wasn't even out of breath. If I had tried this even three days before I would be doubled over, my heart racing, my lungs screaming for air. But this time, it was as if I hadn't exerted myself at all. Since then I have done a number of activities I hadn't been able to do for several years. (which coincidently was when I started taking methadone for my rls -- why hadn't I or one of my doctors thought to connect the two I don't know).
The bad news: oxycodone cr 10mg is not a substitute for 10 mg of methadone. Last night I was up walking every two hours. I took 10mg when I went to bed at midnight but I was up in pain on my right side, from my head to my toes and the twitches. I walked around for a while and then took another cr, walked some more, did some outside chores and then was able to go to sleep but I was up again in another two hours shortly after 4. Same thing. And then up after 6, more pain and twitches. It wasn't the every 20-30 minutes all night long I have without any medication but it wasn't good, especially after the relief that methadone has allowed me to experience. As long as I'm moving and working in the daytime a 10 cr seems to work for 8 hours, but it sure doesn't during my critical period.
Also oxycodone causes me to sweat profusely at night. I sweat abnormally with methadone but not so bad at night that the sheets are soaked. The sheets have been soaked since I started taking oxycodone again.
I called my doctor and made an appointment for next week. Maybe stronger oxycodone or going back to methadone.
What a dilemma. with methadone no rls symptoms but more or less for me physically handicapped.
Anyone else out there with acute hereditary rls taking oxycodone. What strength are you taking and how often?
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SquirmingSusan
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Going through the Pharma sticky list and down toward the bottom I found an equivalence chart which said that 5 mg of methadone = 20 mg of oxycodone. If true, no wonder the oxycodone at 10 mg qid wasn't working when to have the same effect I would have to be taking 40 mg qid. That seems high but it might be so since the ten doesn't seem to be touching my rls. here at 2:20 in the morning as I've been napping and switching for a couple hours now.
With 10 mg of the methadone at 11pm I wouldn't have any signs of rls until 8-9 or so in the morning (have you ever noticed once you get past the 6 am hour your relatively free for most of the remainder of the morning?
With 10 mg of the methadone at 11pm I wouldn't have any signs of rls until 8-9 or so in the morning (have you ever noticed once you get past the 6 am hour your relatively free for most of the remainder of the morning?