Needing advice on getting off hydrocodone

[sdcowgirl]

Thanks for the encouragement. It helps to know someone out there understands. I live in a rural area where I truly believe I'm the only person who suffers from this awful infliction, at least at this level. A therapist I saw once tried to help me start a local support group. Not one person responded. As far as seeing Dr. Silber, I'm afraid that will be a long wait. I would very much prefer at this time to find someone willing to prescribe a stronger opioid, at least for a short time to aid in getting off Mirapex. That was also Dr. Buchfuhrer's suggestion. Wish he wasn't so far away!
I'm going through a lot of depression and anger that I have this lousy disorder. Even though my sister also has a very mild case, there is no one in our family that has any knowledge of it, past or present. Guess I'm feeling pretty picked on. It's caused such a chain reaction of bad things in my life over the past 20 years. If I could go back in time and NOT have injured my back that day, but that's not healthy thinking. Just venting....

[ViewsAskew]

Oh, sdcowgirl, I SOOOOO get the feeling picked on part! My sister, brother, and mother all have it...but they have it mildly. I love that they "get" it, but I really don't understand why I have to be the one with such severe PLMs that I haven't slept through the night since I was a toddler! Or the one that had to stop working because my brain is addled from the lack of sleep, the augmentation trials, and the opioids. Just seems unfair.

Have you called Dr Silber to see how long the wait is? You might get on a waiting list. I had a 5 month wait to see a neuro once - but got in a about 3 weeks because of an opening. Do you know he won't use opioids? I am not familiar with him other than to know he is an RLS specialist.

[figflower]

Cowgirl, I thought you said you had been to the Mayo Clinic already? As far as I can tell these guys have nothing new up their sleeves and some of these so-called RLS experts are so slow (or so money oriented) in figuring out what's going on with us that the only thing you should be scared of is them.

Here's a 2008 interview with an RLS expert. I've tried to leave full names out to protect the innocent (?). First I want you to take note that this guy (can't really call him a doctor because they're supposed to take an oath to "first do no harm" to their patients.) in 2008 is talking about augmentation like it's a hang nail. Did he miss a decade or something? He even says there was a good paper written about it in 1996. That means doctors were seeing augmentation in RLS patients long before even 1996. So what this guy does for what he essentially says is mild to moderate augmentation is he gives it a couple of times a day or tells his patients to start taking the nightly DA earlier in the day. Or he may have them take a drug holiday for a week which he claims "resets" the dopamine receptors. For the "severe" cases of augmentation he has them go cold turkey. And he's very excited about the new extended release DAs. So what should we take away from this? This guy doesn't get it....at least 15 years of horror stories regarding DAs and he's still giving it out like candy in 2008. Ok, next, he marvels about the fact that tests on the cerebral spinal fluid of RLS patients show that "most, if not all tested had low levels of iron" which translates to low levels of brain iron. He marvels still more at the fact that a lot of these patients had BODY iron stores that were hail and hardy. But then in the next breath he's talking about getting the BODY stores of iron up to 300. Which wasn't his idea, he's actually talking about a study done at John Hopkins. He indicates that 80% of people receiving iron infusions at John Hopkins got immediate relief. "They were able to "throw their medications away" even the severe cases." Alas, a year or two later, many of these patients had to receive repeat infusions. So Cowgirl if I were you (and you are not me) I would run from anyone who tries to tell you not to try my iron at night thing. Which isn't even my idea. I stole it from someone else on the internet, who stole it from someone else and so on. And as far as I'm concerned unless you take a form that has some chance of crossing the blood brain barrier, like the iron bis-glycinate, you are doing yourself a dis-service. Rustsmith may or may not be right about the equivalency of iron in terms of getting your BODY stores up but he does not talk about getting it across the BBB or why iron even helps people with RLS. Nor does he mention in his above post (that I saw) that for many years he only needed iron to control his RLS. I think what may have happened is that he was taking too much iron at the wrong time and for the wrong reasons. There's no point in getting your body stores up- as the good doctor below points out these people had normal levels of BODY iron but below normal BRAIN iron. AND, if your body stores of iron get too high the body shuts down the absorption of iron from the GI tract. That's why I want my iron stores in the low end of normal range. I want that emergency, blood brain crossing iron, to work when I need it to. I think the reason the iron infusions work in the first place is because the brain (if the right kind of iron is infused) will suck it up while it's circulating in the blood (not once it's stored so much) and in the ensuing days and weeks the patients' dopamine receptors grow bigger and they may even sprout new ones. Then if you stop the DAs so much the better!!! You don't have that drag on them. Alas, eventually these patients' dopamine receptors return to baseline, which is pretty lousy, because our brains just can't seem to call up iron and retain it. So the receptors wither on the vine. Then like Popeye the Sailorman with the next can of spinach/iron infusion, they grow big and strong. One more thing you should know about the good doctor (?) before he became an RLS expert he was a snoring expert. Only he made the mistake of endorsing (for money) a product called Snore Eze (or D or something like that) in the early 1990s which was nothing more than an herbal mouth spray and claimed it cured snoring. I don't know if you know this, but snoring, if linked to sleep apnea, can be a life threatening condition if not properly treated. His actions were reprehensible and he had to give back all those millions he made. Yeah, sure, this guy answers your emails for free. He wanted to get a buzz going about himself and his website. Like famous athletes that's how you get companies to pay you to endorse their useless products. And this guy is what we call a repeat offender. He's endorsing yet another product, front and center, and claiming an 80% to 90% success rate with nothing more than a vibrating machine. I'm just waiting for the next lawsuit. Anyways, here's the interview and like I said, all names have been deleted:

Dr. : I actually got involved with restless legs in 1991, just about the time the
foundation was getting going. What happened was, a patient came to see me. Her real
name is Elizabeth but she’s always been called Bill. I guess her dad wanted a boy instead
of a girl. She was a retired high school principal/professor, and came to see me with bad
restless legs. She had augmentation from Sinemet, and she had actually done the
research already and wanted me to give her Permax instead. That was a drug I had never
heard of at the time. So I did a little research and found out a bit about it. Even though I
was a sleep specialist I hadn’t seen a heck of a lot of restless legs, as was pretty common
with sleep specialists who do mostly sleep apnea. Anyway, we got her fixed up thanks to
the help of Permax, and she was so grateful she started a support group. As I always like
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to say, she dragged me in kicking and screaming into the support group. I wasn’t very
willing to start because I had at the time three little kids. I was very busy, and this was
four Sundays a year, which I wasn’t sure I had the time for. But it kind of worked out
and I got real involved when I realized, hey, there are a ton of you patients out there, and
there’s a lot we can do for you, and there was a lot of needless suffering. I think I got on
the RLS Foundation medical advisory board in ’96. I’m sorry, ’96 was when we started
our website and our online support group for a local group in *****. ’99
was when I got involved in the medical advisory board of the RLS Foundation. That was
until 2005. I’ve had a couple years off and now I’m back on the medical advisory board.
We usually do two three-year terms, so I’ll probably be on for the next six years. Now,
that gives you a little introduction to how I got involved in restless legs, and I guess with
getting the website going I did quite a bit of work. And then I got recruited to do the
algorithm which we published in 2004, the restless legs algorithm in the Mayo Clinic
Proceedings. Not long after that I wrote the first book that you heard before, with. We actually have two other books that I’ve written with, both for doctors. And the third one is by and
is actually a fairly good book for doctors. It’s probably even a better one to suggest if
doctors want some information, and I think you can probably find it on Amazon also.
Now that’s I guess all the introduction you guys need as far as I go.
As far as where we are with restless legs, clearly we’re in a pretty good situation over the
last few years where we have two drugs FDA approved, and a few drugs on the way.
Unfortunately we were going to have a drug available right now, Requip CR. Most of
you may know that Requip was the first drug approved in 2005 for restless legs. It’s
gone generic as of a few weeks ago or a month ago or so. Requip CR was supposed to
come out to replace it. However, there was a little glitch and the FDA said to the Glaxo
people, the GSK people, that they have to do a little more research and they decided that
it just wasn’t worth it, in part because they have another drug coming down the pike
which will be available right around the time that this drug would have been available,
the Requip CR, if they would have done the additional studies required. I can tell you a
little bit more about them, but I think at this point it may be more interesting for you guys
to ask me questions so that you can get your own questions answered.
Q: My question is on augmentation. Would you define that please?
Dr. : Okay, augmentation is actually very easy to define, although it’s taken doctors
years to figure this out. Richard Allen at Johns Hopkins actually was the first one to
describe it with a nice paper in 1996. Until then it really wasn’t very well understood.
What augmentation is, is actually a worsening of the restless legs due to taking a
medication, typically a dopamine medication like Sinemet or Mirapex or Requip. What
happens is weeks or typically months - sometimes it can be even a week or two,
especially with Sinemet, but typically it takes three or four weeks with Sinemet and
maybe two to three or four months, or a little longer, with the dopamine agonists Mirapex
and Requip. What happens is the worsening has a few characteristic qualities. The first
is that the restless legs starts to get worse and occurs earlier in the day. So let’s say you
only have restless legs at bedtime, 11:00 when you go to bed. You’re put on Requip or
3 Mirapex, three or four months later you start noticing that you’re getting symptoms at 7
or 8:00 in the evening, which you never had before. If you keep taking the medication, it
perhaps could get even worse so it starts happening 4 or 5 in the afternoon or even earlier.
Now, if that’s the only manifestation of the restless legs, that it occurs earlier, usually it’s
not that big a deal because then what we’ll do is we’ll give the medication a little earlier.
So instead of giving it at, let’s say, 9 or 10:00 for the 11:00 bedtime we might give it at
6pm and then it might wipe out the restless legs for the entire evening and take care of
that mild augmentation. However if the augmentation gets worse, let’s say it keeps
occurring earlier in the day and you have to start giving 2 or 3 doses, we’d better rethink
what we’re doing. The other thing that happens with augmentation is that the symptoms
start becoming more intense. You can’t sit as long, they occur sooner, and they’re just
more intense symptoms. The other characteristic thing is that they will start spreading to
other body parts. So for example if you only had restless legs in your legs, and several
months after taking the medication you’re saying, gosh, they’re occurring earlier in the
day, they’re a little more intense, and they’re also in my arms, that may be augmentation
also. What we feel is going on in augmentation is that the receptors, the dopamine
receptors, are getting a little “not happy”, they’re kind of getting sensitized by the
medication and they’re reacting a little strangely. What’s interesting about augmentation,
again it’s a worsening of the augmentation to where it was before you started the
medication, usually several months before. We can prove that it’s augmentation rather
than just something else causing it to be worse. Like for example, sometimes you get a
patient who’s on a dopamine agonist and they start to get worse and you say oh my gosh,
is it augmentation, and then you find out they’ve been given an antidepressant like in the
Prozac family, and that may be worsening the restless legs. So it may not be the
medication. You have to rule out everything else. But once you’ve done that, the way to
prove it is if you stop the offending drug, which is usually a dopamine agonist or Sinemet,
within a week or 2 or 3, usually 2 weeks, the RLS will go back to where it was at baseline.
Of course, you have to be very careful because, for about a week or so the RLS may go
into hyper drive and you have to treat that week or two of marked worsening until things
go back to the way they were before.
Q: Dr. , do you believe that the dopamine medication should be titrated down or
stepped off of, or is it okay depending on time limits, is it okay to just cut them cold?
Dr. B: Well, I’ll tell you what I do. When I get a patient with significant augmentation,
what I do is I cut them off cold turkey. Because the problem is the receptor being bugged
by the dopamine, so you want to end it as soon as possible. Now I know when I do this
that the RLS is going to get dramatically worse for about a week or two as I just
mentioned, so what I do is I supply my patient usually with a potent opioid pain
medication in the codeine/Vicodin/Oxycodone/Methadone family. And I make sure they
get enough of it so that they can treat the withdrawal symptoms from getting acutely off
of the dopamine agonist or Sinemet or whatever it happens to be. Once that week or two
is over, they just simply stop the medication, the opioids, and then we go to plan B and
give them something else that will take care of their restless legs.
4
Q: What is the latest research on the link between iron deficiency or low ferritin levels
and restless legs?
Dr. : The question is, for those of you who may not have heard her completely, is:
what is the latest research on the link between low iron or low serum ferritin levels and
restless legs? Well, most of the research actually unfortunately is pretty old. It’s
interesting, because even way back in 1944, Karl Ekbom who discovered or in the
modern day described the restless legs syndrome, even then he thought that anemia was
associated with it and saw that there was a high percentage of anemic patients. So we’ve
kind of known a little bit about this link. In the last 10 years there have been several
papers that have just linked low ferritin levels with restless legs. But these are just
studies where they just look at patients and they see how bad they are and what they have,
and they found that when the ferritin levels were lower, patients did worse. There’s been
very few if any studies showing that giving iron really improves the situation. We know
that a little bit anecdotally but they haven’t done too much of that. So most of the data
that we have is just looking at statistics on patients with restless legs and find out that
they have lower ferritin (levels) than patients without restless legs. And the ones that
tend to be worse are the ones with lower ferritins. Now the exception to what I have just
said is the group at Johns Hopkins, which is led by Richard Allen and Chris Earley.
They’ve been doing a lot of research on iron. In fact, that’s the foremost clinical place
that iron research in restless legs is being done. There’s another place with John Connor
and I’m just blanking which university he’s associated with. He’s a PhD not an MD and
they’re doing more theoretical research rather than the more clinical stuff that Earley and
Allen are doing at Johns Hopkins. But I’ll tell you some interesting data on this that is
fascinating for me, and I’m sure it will be fascinating for you guys. What the Johns
Hopkins guys did a few years ago is they took a bunch of fairly severe restless leg
patients, they examined their serum ferritin levels. Just let me say for those of you who
don’t quite understand ferritin and iron and anemia and all these things, iron is important,
is necessary to make the hemoglobin, which is the red stuff in the red blood cells. So
when you don’t have enough iron you can’t make enough red cells. You can measure
how anemic someone is by looking at the red cells, or what we call the hemoglobin. But
that’s the last thing that happens when you’re low on iron. The body will fight, even
when you’re pretty darn low on iron, the body will fight to produce red cells. What we
next did is we looked at the iron levels, and that’s the next best thing to do to see if
there’s an iron problem after looking at the hemoglobin. Of course, you can have a
normal hemoglobin and the iron levels may be a little low, but the body’s still doing well.
However, that still doesn’t give us a good clue, because sometimes you can have a
normal hemoglobin, normal iron levels in the blood, but there still may be a body
deficiency of iron storage. So what we then do is we look at serum ferritin. That’s how
the body typically stores iron. So even in a patient with a normal hemoglobin and normal
iron, you sometimes find low serum ferritins. Of course, the absolute best way to find
out how well the iron stores are in the body is to do a bone marrow biopsy, which is
unfortunately very painful. It is done on patients who you’re really concerned about
what their iron stores are. Or chemotherapy patients get this all the time to check their
blood cells and iron, etc. But we don’t like to do that, so the serum ferritin is the most
accurate way that we doctors, and especially we restless leg doctors, like to look at the
5
iron status of patients. So what the team at Hopkins did is they looked at serum ferritin
levels, but they even went one step further. They took what we call CSF, cerebrospinal
fluid, levels of ferritin. What that requires is to do a spinal tap, put a needle right
between two of the spines, usually in the lower back, and suck out a little bit of spinal
fluid that runs in the spine and around the brain. It all communicates together. So by
checking the levels of ferritin there you can see what the brain levels of ferritin are. And
of course that’s the most accurate for restless legs. What they found is that most of these
patients, or most all of them, had low ferritin in the CSF around the brain and spine.
Some of them even had pretty good levels in the blood but the brain was low. And that’s
what happens because the body will pull all the iron in the form of ferritin away from the
brain and other places and suffer so that we can get enough iron into the bone marrow.
Now they found these low levels and what they did is, they didn’t give oral iron. Now
oral iron is pretty tough to take. People get nausea and stomach upset; people get
constipation; some get diarrhea. The ideal way to take it is an hour before eating on an
empty stomach, of course, with some vitamin C to acidify the stomach and make it
absorb better, which makes it absorb very well but increases the chance of getting some
stomach upset. And even after all that, it’s really tough to get the levels up. So what
these guys did at Hopkins, is they bypassed that – they gave the iron intravenously, and
by doing that they brought the level way up. Now typically what we say is when we
check a serum ferritin level, is we want to get the level above 50. Most of the labs report
normal levels as over 10 or 20. We’re a little more aggressive; we want it over 50. What
the guys at Hopkins did, they gave it intravenously, usually about 2 or 3 or 4 series of
infusions of this iron, and they got the levels around 200. Well, lo and behold, about
80+% of the patients all of the sudden had their RLS symptoms completely vanish. They
could drop all their medication, and these were severe patients for the most part. They
dropped all their medications; they felt great. They said, “My RLS is cured.” Anyway,
very interestingly, 6 month to maybe 2 years later, these patients started calling back and
saying, “My RLS is coming back, what’s going on?” So they brought them back to
Hopkins and rechecked their serum ferritins and their CSF ferritins, the ferritins around
their brain, and lo and behold, these guys were again low on ferritin. Now typically,
when we get someone with iron deficiency, anemia or not, and we tank them up full of
iron, and typically this will be someone who has like a bleeding ulcer or women with
heavy menstrual periods or God-knows-what, who get low on iron, once we tank them up,
unless they bleed again, they’re good for life. So this was very perplexing. And now
what we believe is that the real defect in restless leg syndrome may in fact be a leaching
out of iron faster than normal. We all lose a little iron every day but we get it back in our
diet very, very easily. We feel that restless leg patients are losing it much faster, so the
normal diet doesn’t come close to replacing it. And at least the guys at Hopkins postulate
that the genetic defect may be something to do with iron metabolism and that the RLS is
only secondary to that.

Since America is all about free speech, I personally wouldn't go to this guy to treat my RLS even if my life depended on it. Cowgirl, it's all up to you. If this guy is so great then how come all the people who are recommending him are doing so bad? As a matter of fact, it's the people who are finding their own solutions, such as an anti-candida diet, lots of vegetables, lots of yoga, that are doing well.

[sdcowgirl]

Thank you. Interesting reading. I'll take everything into consideration.
The last time I was to the Mayo Clinic was 1997, so it's been awhile. Personally, if I could find a solution myself, I'd never go back but even if I get off both Mirapex and hydrocodone, I'll probably have to take something to replace them and if you saw my first post where I listed all the meds I tried, there's not much left to pick from. My local FP knows nothing of RLS and admits it, wants me to see a neurologist but I've NEVER found a neuro who knows anything either.

[Rustsmith]

sdcowgirl, I know that it isn't much consolation about finding a doctor who knows RLS, but when I was at my last appointment with my current doctor I asked him if he knew of anyone in Colorado that I could use after I move. He said that he did not know of anyone in Colorado other than a doctor of pharmacy in Denver. He then proceeded to say that even the neurologists who specialize in movement disorders in that area are not up on the treatment of severe RLS. At this point, my only hope is going to be that I can find a movement disorder specialist at the medical school in Denver who is willing to accept guidance from my current doctor and the pharmacy doctor. Even then, I am probably going to need to return to Texas once a year to continue my relationship with my current doctor.

[JimmyLegs44]

sdcowgirl - I am in a similar situation, except for the hydrocodone part. There is a member (WBruce) who I believe was on Mirapex and Hydrocodone and went to Dr. Earley to get off these drugs. He went thru the drug holiday and I believe ended up on Methadone. Here is the thread....take a look at his July 8th post regarding his protocol for tapering down.

viewtopic.php?f=2&t=9192

I wish I had better news, but I don't believe there is an easy way out of this. Taper off the drugs and suffer. The only question is whether or not to do it with an opioid or other covering agent. Some experts believe it can be done with an alpha-2-delta ligand, such as Gabapentin, if the augmentation is not too severe. Some experts believe opioids only delay the inevitable, and I tend to believe them. I think if you use a potent opioid to help you off the drugs, there is a good chance that you will end up on an opioid long-term, or else you will suffer similar withdrawal symptoms coming off the opioid. Just my opinion (and some RLS experts), but something for you to consider anyway. The hardest part is knowing if you will be in the lucky 25% that won't need drugs after you're off Mirapex. If you'll end up needing an opioid anyway (like WBruce), then you might as well take it while getting off Mirapex and Hydrocodone, so you won't have the horrendous withdrawal symptoms.

I have an appointment with Dr. Silber next month. I tried to set up an appointment in early August and was on a waiting list, so it will probably take you a few months to get an appointment. The best thing you can do is educate yourself going into the appointment. At a minimum, check out this algorithm from May, 2015 regarding the treatment of augmentation:

viewtopic.php?f=21&t=9357

I'm not sure what Dr. Silber can tell me that I don't already know, but after several failed attempts with my local doctor, I thought it made sense to seek out an "expert". Hopefully, he can at least run an EMG to see if there is nerve damage (my RLS started shortly after an accident causing head-to-toe road rash 20 years ago).

I hate drugs, too, (it was love-hate for awhile, now it's just hate because they are doing me more harm than good) and look forward to hopefully being drug-free within a couple of months.

[sdcowgirl]

I read most of WBruce's posts. I can't believe the agony he went through for so long. Don't think I could stick it out like he did.
I've been on methadone, couldn't tolerate it for more than a month then started having panic attacks.
I'm hoping to see Silber (maybe) but I'm feeling pretty discouraged. I feel I've been treated like a lab rat for 20 years and distrust doctors and drugs so much I hate them all.

[debbluebird]

sdcowgirl, I know that it isn't much consolation about finding a doctor who knows RLS, but when I was at my last appointment with my current doctor I asked him if he knew of anyone in Colorado that I could use after I move. He said that he did not know of anyone in Colorado other than a doctor of pharmacy in Denver. He then proceeded to say that even the neurologists who specialize in movement disorders in that area are not up on the treatment of severe RLS. At this point, my only hope is going to be that I can find a movement disorder specialist at the medical school in Denver who is willing to accept guidance from my current doctor and the pharmacy doctor. Even then, I am probably going to need to return to Texas once a year to continue my relationship with my current doctor.

Here is one I found from the list, from this site. General Topics, Recommend Doctors

Dr. Alan Aboat
13111 E Briarwood Ste 250
Aurora, Co 80112
303-805-1800

I believe there was one in the Col Springs area. Since I don't know what part of the state you are in.
Deb

[sdcowgirl]

Colorado Springs is closer (I'm in the south central part of SD) since Aurora is basically a suburb of Denver, but it feels like I'm going in blind to pretty much any neurologist since they all have different ideas of how to deal with RLS. I found a Dr. listed here once from North Platte, NE (4 hours from me), even though she was listed as an 'RLS' specialist, once I got there I discovered she knew next to nothing about RLS. (she was more into homeopathic remedies and I was already way past that point). Still feeling like a lab rat that's just being experimented on because they don't have a clue.

[Rustsmith]

Deb, I will be located in Pueblo, about 40 miles south of Co. Springs. Although there is a local group of neurologists associated with a teaching hospital and they do have RLS patients, I was able to determine that they do not have any severe level patients and are not willing to write scripts for any opiates. Their nurse said that for treatment of severe RLS that requires that level of medication, I will need to go to the U of Colorado med school in Denver. So I have already started things in motion to get a referral to one of them just as soon as I arrive. I tried to speed things up a bit today, but no such luck. I have to go through their local medical establishment's proscribed motions.

[badnights]

even though she was listed as an 'RLS' specialist, once I got there I discovered she knew next to nothing about RLS. (she was more into homeopathic remedies

I think I'm in cardiac arrest. A medical doctor pushing homeopathic remedies?? The world has gone mad. Functional medicine is great, but not only is homeopathy not a science, it's been proven ineffective. How could any scientifically trained physician tout it as a viable alternative? No wonder you feel like a lab rat. Lord I hope you find a decent doctor soon!