And I thought Hydrocodone was for pain!

[kickyknees]

Hi, I'm sort of a newbie and have moved my discussion from the New Members Board/New Member Info to this Pharma board.

First I'd like to say that I'm resistant about taking prescription meds. But in my case I developed a "hard core" case of RLS after a (right) rotator cuff surgery in June '09 which I believe to be a result of the nerve block I was given (the only anomoly upon comparing past anesthesia records).

At home after the surgery I thought I would go mad from lack of sleep and cry out night after night while rubbing my legs (with my one good arm ) I quickly saw my P.C. doc who prescribed ropinirole for me, starting at low doses, but it worked so well that I bit the bullet on the nausea and sleep inducing qualities and increased the recommended dosage on a quicker scale till I was up to 2mg within 3 weeks. I had quit taking pain meds because I didn't need them for the rotator cuff surgery after-pain any longer.

However, about midway into my first few weeks of ropinirole (R) I started taking extra-strength Tylenol for the other shoulder (left) pain. I had already been told I would require total joint replacement, but that the rotator cuff should be done first.

Here's a quick recap of the next 10 or so paragraphs. If you want to skip the details scan down to paragraph in bold.
...Days.....Ropinirole.....Hydrocodone (HC); H-morphone (HM); Tramadol (T)
.....55...........2.0...........HC
.....45...........3.75.........HM
.....45...........4.5...........HC
.....40...........4.5........... T

Enter: PC doc again. Explained my pain level to him so he prescribed hydrocodone. My first day on that was Aug 6. For the next 55 days, I was able to maintain a steady 2mg R while averaging 400-500mg hydrocodone.

Toward the end of September I drifted up into 3mg R and at the same time asked my doc for a stronger pain pill due to my right shoulder joint. I was prescribed Hydromorphone, the drug I'd taken after the rotator cuff surgery. Stayed on that averaging 2-4 tabs PRN and the ropinirole was pretty steady at 3.75mg, occasionally jumping to 4.5.

The second week of November, I expressed fear of taking such a strong drug till my scheduled Feb surgery, so my doc switched me back to H-codone, PRN 1-2 tabs, every 4hr. I hit 500-600mg and the R fluctuated between 3.25 to 5, but basically averaged at 4.5.

Toward the end of December I became concerned of the acetominephen (apap) levels I was consuming, so the doc prescribed tramadol 50s which I took PRN at 2-8/da but most days averaged out at 4-6 (200-300mg) with pretty steady 4.5 R consumption. That's where I stayed the next 40 days till my early Feb surgery.

Sidebar: my iron levels were dangerously low (9.3) during blood work in preparation for my surgery, so I was given 2 units blood because there wasn't time to see if iron tabs alone could bring my levels up to 12. But also then supplementing with iron tabs, the day of surgery, I was actually at 14.

Therefore, hoping I could relax on the ropinirole after the surgery, I went as low as 1.5-3.0. and did well. But till finding this website, I didn't realize it was also the during-and-after surgery opioids that were keeping me RLS free!

The drug prescribed post-surg was oxycodone, so as I came to the end needing it for the pain, I was down to ZERO ropinirole for 3 days, but as I stopped the oxy, immediately required ropinirole at 4.5, then 6.0, 7.5 and blew up to 9.0 over the past weekend!

That brings us to early this week when my doc said that was too much ropinirole and prescribed neurontin 100 2x/da for me. I expressed on the new members thread that I would prefer going back to the oxycodone since that seems to have had the best collective effect.

With neurontin, it puts my lights out an hour after taking it, but after another hour, I'm up. Not too bad in the daytime, but for the past 3 days I've been up at midnight, awake for a few, then back to bed after taking another ropinirole, so my R levels are still up at 7.5 and the neurontin seems only to create crazy sleep patterns. At least on the hydro/oxys I could get 5 hours sleep, so getting up at 3:30-4A doesn't seem so bad in retrospect.

I can't wait for the results of the blood tests (ferratin level/magnesium, etc.) which I should hear about today. And my book, "Clinical Management of Restless Legs Syndrome" just shipped!

Well, that was quite statistic-filled. Now that I've been able to quantify the past 8 months (even though I regularly took the most current spreadsheet for my doc to review) I need to schedule yet another appt with him. I don't believe he wasn't looking at the way the agonists and opioids work together.

I don't know how many of you have read and comprehended this (or with what clarity I've presented it!), but at least I know I'm not alone in trying to work out best and lowest possible dosages of ALL meds for this horrible affliction!

Still tracking on my spreadsheet,
~G.

[Neco]

If they had kept you on opiates from the start, you probably wouldn't even need Requip, or to try Neurontin or all of this other crap.

Its really unfortunate. Some people do well enough on Requip/opiate combos as it does work for them. But ideally you want to cut the Requip out completely.

Especially considering the amount you are taking. You have repeatedly had to increase your Requip dosage from the sound of it. That sounds like augmentation that is heading out of control, if you also had to pile opiates on top of it to still get relief.

The best thing would probably be to get OFF the requip, and try making it with an opiate alone, such as Oxycodone or Hydrocodone. The hard part is, when you stop a DA completely, you will go nuts, and even sometimes the really strong stuff like Methadone is of little help. But that period won't last forever as long as you can get through it.

I think you may have actually been in the start of this period when your Oxycodone had run out, and that is why you had such a high dose requirement to get relief from Requip.


You need to print out the Mayo Algorithm in my signature, and show it to your doctor, if you haven't already. It has clear guidelines for when DA's should be stopped, and clear guidance on the opiates that can be given in their place.


Also regarding your comment in your other thread about Requip up to 24mg a day. That is an obscene dose for any RLS patient. Even 9mgs I would say is ridiculous. The higher end of the dose spectrum is only going to be populated by Patients with Parkinson's Disease (the primary reason Requip was developed) or RLS patients who have really, really stupid Doctors.

So keep in mind, your doctor is right that 9mg is way too much for you in this case even if it seems "low" overall.

[kickyknees]

zach, since I got there almost instantly due to morphine drip, and other oral meds while in the hospital and the week after, is it unheard of to give a "boost" shot/oral dose in order to avoid the countereffects of the lack of ropinirole in my system? anyone else want to weigh in on that?

of course, I didn't really cut back my ropinirole till a week after surgery, but have the second week's worth of data when I was experimenting (with trepidation!) on cutting back. At the time I thought I was doing so to test the effects of my [assumed] greater iron stores.

this site has been a real educational tool and yes, I already had printed out the algorithms for my doc as soon as I see him, and will also give him a printout of this post which synopsizes my spreadsheet info, lest he be a doubter.

[kickyknees]

zack, sorry not to address this in the previous post...how long does it take to go through requip "withdrawal" and what really is so bad about being on it, even at 2-3mg if I could get that low (for me)?

[ViewsAskew]

zack, sorry not to address this in the previous post...how long does it take to go through requip "withdrawal" and what really is so bad about being on it, even at 2-3mg if I could get that low (for me)?

Kicky, how much have you read on the site about augmentation? I know you're reading quite a bit from what you've said, but you may not have gotten to that yet. I ask because augmentation is the devil in my book. Admittedly, I'm a bit jaded.

I had very mild RLS - maybe a time or two a month - but I had severe PLMs - the kicking movements while sleeping. So, they put me on Mirapex. Soon I had RLS every day starting at 10 PM. Doc said to take it earlier. Then it started earlier....well, you know where this is going. Within months, I had 24/7 RLS.

Augmentation continues to get worse. If you do not stop the drug and you've augmented, the RLS just gets nastier and you have to continually increase.

When you stop the dopaminergic drug, the RLS gets yet worse (I didn't think it was possible....it is) as Zach noted. This period lasts from a few days to a month or more. For most of us, opioids are the only way to manage this period. For me the anxiety was palpable and horrible to deal with, let alone the RLS.

The worst part is that for a very, very tiny minority of us the RLS does not go back to its prior level when we stop the dopaminergic. I am one of those. So, I went from RLS once or twice a month (and it only lasted 10-20 minutes) to 24/7 RLS and the required use of opioids for the rest of my life.

In terms of using Requip at high levels, taken out of context of the augmentation, no one knows what would happen to you. The amounts given are what was tested when the drug was trialed. Doctors usually follow those guidelines relatively closely. Yes, a lot more is given to Parkinson's patients; they need that much to control their movements.

In looking at The Clinical Management of Restless Legs Syndrome, you are not above the max that can be used. If I am reading the chart correctly, the individual dose range is .25 to 4 mg and you can dose up to 3x daily. The average daily dose used is only .5 to 2 mg, which is much, much lower.

To me the issue then isn't whether your dose is too high, as it appears it is not, but whether it's effective and whether it's causing the problems itself.

The test would be to stop the Requip, use an opioid to get through the nasty period, then test the Requip again. Try it at the original dose without using any opioids. If it works, it may work for you again at the lowered dose. When people try this, some of them get another year or more out of the drug before they have to again stop it and "reset" their brain. Others immediately augment and can no longer tolerate it.

Recent research seems to indicate that augmentation tends to be worse for people who have low ferritin when they start the dopaminergic. It might even be best to wait to start it again until you know your ferritin level. If between 50 and 200, you're in good shape and it will hopefully lessen the risk.

[kickyknees]

Can someone please educate me on why opioids would be any better/safer meds than the agonist/neurontin types since that seems to be the way the documentation and posters here recommend?

[SquirmingSusan]

The opioids are just that much more effective. I've never heard of anyone who was able to get by on Neurontin after having augmentation problems with Requip or Mirapex. After the initial "withdrawal" period from Requip, after the RLS settles back down a bit, then anticonvulsants like Neurontin or Lyrica might work for you.

[ViewsAskew]

The opioids are just that much more effective. I've never heard of anyone who was able to get by on Neurontin after having augmentation problems with Requip or Mirapex.

And, no one knows why. They just work when nothing else does.

You don't have to stay on them, as Susan noted, as long as you can either go back to the dopaminergics or one of the other drugs work.

[Neco]

When you stop a DA, like Requip or Mirapex, the increased RLS can last anywhere from a week, to a few weeks. I don't know the specifics about it, but I assume it depends on the patient and how much they were taking, how fast it was cut off, etc.

As has already been said, opiates are simply more effective at controlling RLS. Nobody really knows why, but as a failsafe after several failed medications from other classes, they almost always bring relief to the patient, and sometimes the relief is even better than their best days on other medications.

I am of course, not a doctor. So this is all just my opinion based on my own experiences and research / reading.

[badnights]

If you follow the algorithm, the next step would be to try the other approved DA (pramipexole/Mirapex). Then if that doesn't work, move on to anticonvulsants (as Ann said, though, they're not much use for bad RLS except in combination with a DA or opiod), and finally opiods. However, following an algorithm is not always the best approach, expecially for a doc who has plenty of clinical experience with the problem.

You mentioned a while back about not wanting a cocktail - keep in mind that combining 2 drugs can enable you to get by with lower doses of both. This might help prevent tolerance and augmentation.

No matter what you end up on, you will have to withdraw from the ropinirole - even if you end up back on it at a lower dose, you have to clean it out completely. And the withdrawal is livable if you know it's going to end. Before you withdraw, tell your doc you've heard there will be severly increased symptoms for a week or a month, and if that happens to you, will you be able to get hold of him/her again in a hurry? There is no way any doctor would knowingly subject a person to that agony, so if he does, it means he doesn't know and you have to let him know what's happening, and ask what he can do to relieve it.

If he wants you to cut back, not stop completely, you should point him to the augmentation section in one of your references, because cutting back is the wrong thing to do.

Unfortunately I can't point you to any literature which discusses use of opiods to cover withdrawal - we were talking abnout this in another thread recently, and we all know about it through posts on Dr. B's website, and just assumed it was in the Mayo algorthm or the Clinical Management book - but it's not. The only place I have found it written that opiods should be used to cover DA withdrawal is in the book for laymen that I linked to in your first thread. You mentioned the "Clinical Mgmt of RLS" book, which is excellent and awesome but does not mention using opioids to cover withdrawal (tho it talks about opiods extensively). So if you want something to show your doc, it has to be the other book (you can print the relevant part for free) - or, email Dr. B and ask his opinion, then tell your doc you've emailed this guy (give his credentials - one of the authors of the MAyo algorithm and of the Clinical Mgmt book, director of a sleep clinic in CA) and show him the reply.

Dr. B's site is here.

[Neco]

Interesting. I am pretty sure at one point, it was listed in the Algorithm that opiates could be given to cover DA withdrawal. But they do make periodic changes to the Algorithm so it may have dissapeared at some point.

The last time I was aware of a concrete change was when they adding Methadone to the list of recommended medications for Refractory RLS.

Also I agree, you don't have to follow the Algorithm to the Tee. But it is a good base to go off of, and a good reinforcement for petitioning your doctor for opiates instead of trying other meds, if you know they work for you, since they are recommended when all other drugs fail or have unbearable side effects.

E-mail Dr. B for sure and ask him if he can write you back something to show your doctor about the use of opiates for DA withdrawal, and also if he has any links to medical articles discussing it.

Pubmed is a good place to search. It is where I found an article from a Dr. who had studied Methadone for treating RLS patients and was the only reason I was able to get it prescribed. So I lucked out, maybe you will too.

[kickyknees]

bethf, do I understand you right then, that merely to pick back up again on any one of my previous painkillers (oxy-hydrocodone, tramadol, etc) would have no effect on being able to gradually lessen the dose of my ropinirole? If so, then why was I able to decrease dosage to zero after the cadre of drugs given me after my surgery? At this point I'd be happy to get back to 3.0 in combo with oxycodone. If one could get off ropinirole with the help of opioids, why would anyone start taking it again? Sorry, seems all I have are questions.

BTW, just got my blood test results today.
My hemo count is down to 11.6; normal 12-15 (according to RX sites, it seems ropinirole can "eat" iron!)
Iron level: 50; normal 50-170
Ferratin:16; normal 10-291
Saturation:14; normal 15-34
My Folate, Magnesium, B12, were normal.

Nurse relayed that I need to be on iron supplements 2x da for 6 months. I would expect levels to return more to normal, if I could leave the ropinirole in the dust.

Also, doc wants me to report back to him after continuing on neurontin for 10 days, which, at this point I am reluctant to do, based on 3 days of my even more sporadic sleeping results, not to mention the posts I've read here. In fact, have not taken it at all today, but went back to a partial bottle of oxycodone (1 tab every 4 hr) and have taken 1.5mg ropinirole only 2x and will take one more at bedtime (8 hr intervals) as I previously did when on the oxy...but if it works, how do I tell my doc I "did it my way"?

But is the consensus that I will not be able to continue on oxy and cut back ropinirole with any success? If so, please explain the science behind that.

Thanks all for your patience in answering my questions. I am learning lots from your personal experiences.

[ViewsAskew]

Kicky, we're not being clear. I hope the following helps (it's so darn complicated and I wish it didn't need to be; we're all too tired and grouchy to have to figure this *%&$^ out!).

1. Yes, opioids will help you stop the Ropinerole. They are the only thing that will if you have augmented.
2. You have to completely stop the ropinerole (it's often done cold turkey, but that's a much lower doses, so you may need to taper) for at least a month or so, not just reduce it. Use the opioids during that time.
3. Once the icky period (technical term) when the RLS is worse is over and it's been at least a month, you can either try ropinerole OR pramipexole and completely stop the opioid at that time. Try it at the same dose where it first worked. One caveat: augmentation is thought to be worse for people who have low ferritin. Since yours is low, you may not want to try a dopamine drug until your ferritin is at least 50. That could easily be 6 months or longer.
4. When you try the ropinerole or pramipexole, if itworks, great.
5. If you augment on the dopamine drug in a short period of time, you should not try another dopamine drug again.

[badnights]

Ann pretty much explained it. Just one thing I should clarify: the only reason you would have to stop ropinirole completely and get it out of your system, then try it again, is if you were augmenting due a too-high dose of it. That means the dose was higher than your body could handle, which made your RLS get worse, which made you need more, etc etc. Just because you've augmented doesn;t (apparently ) mean you can't use the drug successfully at lower doses, but you have to get it out of your system and get back to your baseline RLS before you try the lowered dose of it. This is irrelevant and you can just lower the dose if you haven't augmented, but we're all assuming you have, because your dose is so high and you recently raised it a few times. But you can decide for yourself once you've read about augmentation.

Note that serum ferritin is reported by labs as normal at values as low as 10, but RLS experts suggest if it is below 50 you need to get it up above 50 (this is in both Dr. B's books, plus some papers on Pubmed).

No reason not to take the neurontin too, and if it's not doing the job, tell him you know he couldn't have intended for you to suffer like that - and describe the suffering in two or three to-the-point phrases - and that you used oxy cux you knew it would work and you'd been reading that it's an accepted treatment for RLS . i.e. tell him the truth! it works. But I thkn it's important ot try things as he asked, for as long as you can stand it (I think you did alread?) so you have that data to give him: " I tried what you said for x nights and this is what happened."

[kickyknees]

thanks, beth and ann. just to be clear about whether i've augmented (and let you draw conclusions based on years of experience) these are the past month's totals column of what i recorded on my spreadsheet:

Feb 3-6; hospital recup w/ painkillers 4.5/mg ropinirole da
2/7 & 8; 4.5 w/6 oxycodone
2/8 & 9; 1.5 w/6
2/10-12; 1.5 w/5
2/13-15; 0 w/ 5,2,4 oxy, respective
2/16-20; 4.5 (2/16 stopped oxy--immediate ropinirole resumption required)
2/21; 3.75 (side note: "worst RLS since 1st (June) surgery". this is the day that having no oxy hit me-but i didn't know the reason behind it then)
2/22; 7.50
2/23; 4.5
2/24-25; 6.0
2/26-27; 9.0
2/28-3/4; 7.5-9.0 w/neurontin
3/5; 4.5 (self regulated- back on oxycodone 500x3)

you may remember from one of my earlier posts that I stopped the oxy because I didn't need it for the pain...and I decreased my rop. because of what I'd hoped would be sufficient iron stores--both for all the wrong reasons!

since those high levels have persisted, even fluctuatingly, only for 2 weeks, am hoping that it was a "false" augmentation and that resumption of the oxy will allow me to continue with 4.5 or less ropinirole.

like many senior citizens, i've been under a lifelong assumption that about the worst pills a person could take are the opioids, but i have a whole new outlook on that as well now.

right now, i just want to get through a night without a 2-hour awake period.