Hi, all. I'm a new member to this great community. I took the name rls_optimist, because I strongly believe there are effective treatments (combinations, in my experience) that will work for everyone. One just has to experiment and never give up hope. And never cease searching out good, expert information (Drs. B, Earley, Winkelman, Allen, etc.)
First, some history: I have moderate-severe RLS, in legs only, so far. I've had it for 11 years. Previously treated with pramipexole, up to 2.5 mg (my GP didn't know better, nor did I). The inevitable augmentation followed. After several 10-14 day washouts over the years (with help from oxycodone, since I don't subscribe to Dr. Earley's needlessly brutal, cold-turkey washout method), I found a knowledgeable neurologist who moved me primarily to 2100 mg gabapentin, with just 0.5 mg pramipexole. Less augmentation, but still some. Now, after one more washout, he moved me to the 2 mg Neupro patch, plus 1800 mg gabapentin. Worked great for 7 days, but then failed. So I've just now started the 3 mg patch, plus the same gabapentin (we're going to try Lyrica instead, soon). So far, so good. I'm cautiously optimistic, recognizing that I may augment on this. No more pramipexole, though. I will also soon be discussing iron infusions with a hematologist. (Oral iron has not helped much; ferritin level got as high as 50, then dropped down to 18 most recently. More evidence for the theory of iron-leaching as possible cause of RLS.)
Now, regarding patch application timing. Have any of you experimented with more than one time of day, and if so, what has worked best for you? (Please also give best number of hours before your time of worst symptoms. For example, mine is just post-bedtime, as I'm drifting off.) Also, location: shoulders seems to work best for me, but that's preliminary.
I apply mine at about 8 AM daily, ~14 hours before bedtime, which seems to work well, but I haven't tried anything much different. I use as a guide the graph that plots rotigotine level in the body, vs. time. It comes in the patient info folded up in each Neupro package (also here: images.rxlist.com/images/rx.... I note that rotigotine level seems to be at maximum in the body around 15-20 hours after application. I also note that there are significant dips near both the beginning and end of the 24 hours. So I'm aiming to time it so it's maximized from bedtime to when I wake up.
Thank you all.
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I’m on the 4mg patch and have been experimenting with times of the day that I put in on. I’ve tried applying it right after my morning shower (anywhere between 9 and 11) and I’ve tried applying it just a few hours before bed. I have found that applying it in the morning is best (for me). I can normally tell pretty quickly if it has fallen off or if I’ve forgotten to change it out. I’ve also noticed that it stops working well right before it is time to change it out.
Hi, and thank you. Yes, that's what I'm looking for. And your experience seems to confirm what that graph shows. Also, if you have symptoms breaking through just before it's changeover time, I note that several members here apply the new one a few hours before removing the old one, so the new one has time to take effect.
You’re welcome! Yes, it does confirm it, doesn’t it? That’s a good suggestion about overlapping; I’ll have to try that. Thank you!
Tell me, do you experience problems with the patch ”scrunching up” while on? It’s an issue with me, so I brought up to my neurologist; he didn’t seem to think it was a problem. I have a film that I sometimes put on over the patch to help with that (as well as to keep the edges from curling upwards), but I don’t always put it on as I find it a bit frustrating to apply. If interested, it is a Tegaderm film that can be gotten at the pharmacy.
I haven’t had that issue with the path, although sometimes an edge separates from the skin a little. When that happens, I’ve had good luck taping it back down using 3m Micropore paper tape. Works well, and doesn’t cause irritation.
Just one caveat about wearing the old and new patches together. I wouldn’t do that for more than an hour or so, since you’d be effectively increasing your dose above the 4 mg level for the overlap period. I’ve seen some members here posting that they overlap two patches for the whole night. That may be inadvisable.
Thanks, Paraminter, I'm on it. Got a referral to hematologist last week, waiting for them to call me. Will definitely follow up. Like you, I firmly believe that iron is likely my #1 problem, and I will ask for infusions as soon as I see them.
Ah, the Stoics - good models for all of us. Marcus Aurelius, and wise Epictetus before him, would stress the importance of maintaining some equanimity when the RLS symptoms come stealing in like thieves in the night. "Do not be carried away by the appearance of a thing [like RLS symptoms]", Epictetus said. Good advice, but hard to remember at 3 am. Although I'm a Yank (Boston, MA area), I am also fond of the Queen Mum's dictum: "Keep calm and carry on!" That has come to my rescue more than once in the dead of a twitchy night.
A Yank from Boston, excellent. I do hope you are not one of those who is currently going down the drain with odd notions from the Tangerine President. Somehow I doubt it.
Epictetus it will have to be, but I would far rather be an Epicurean.
Now they had some very fine ideas that would do the twisty modern world a power of good.
It's the middle of the night (in Winter in Africa, actually) and I cannot sleep and my legs and arms are unaware of Stoicism (this proves mind-body dualism).
Nicely put, Sir. No, I am certainly not planning on following that pitiful, infantile, Tangerine Madman as he tries to pull us all down into the abyss. We will all need the patience of Job to get through these next few years.
Oh, I apologize. Odd how the mind jumps to conclusions. Well, then, nicely put, Madam!
You must have had interesting parents, naming the dog Marcus Aurelius. Hope he wasn't too fond of wandering; it would take a long time just to call him home. Bet he was a good friend. And yes, a dog would be very nice for the middle of the night. There should be a canine section on the rlshelp.org treatments page.
Sounds like you were a very lucky girl, and woman, indeed. (Except for the RLS part...) You inherited what I assume was their love of language and word-play.
I was lucky as well. Loving parents, lots of books, music and art in the house. With a deep, infectious curiosity for life and ideas.
Now, I do hope you’re going to get some sleep tonight.
However, I have methadone syrup to help me over the bumps. I use it seldom, but it is an occasional blessing.
When I first used it I realized that my limbs are never truly relaxed, they are lightly shimmering on the threshold, a pre-pre-RLS state.
Methadone allows you to remember what relaxation felt like, long ago. A total becalming of the limbs. Miraculous.
It is an otherwise remarkably clean drug and it does not leave you in deep hole the following day, unlike some of the ungodly mixtures that contain an opioid and something else. These latter just have to be about money.
So, should you need an opiate-oid, methadone is not a bad choice.
It is as good as a large dog or three small cats.
Of course, laying hands upon it is interesting, to say the least. HIlarious, really.
I do have some low-dose (5mg) methadone tablets that my neurologist prescribed as a rescue drug. I note that Dr. B and other experts find it the best of the opiates for RLS. But so far, it hasn’t worked out too well for me. It takes hours to take effect, and doesn’t really quell my symptoms as well as a low-dose (5 mg) oxycodone (quicker-acting, shorter half-life). I agree that it’s gentler, though. So I will continue to experiment. I will try taking two tabs next time.
And yes, it’s not straightforward getting opioid prescriptions over here, either. I’m fortunate that my neurologist is knowledgeable and is in the Mass General sleep lab of Dr. Winkelman, a lead author of the aforementioned 2018 opioids clinical guidelines paper.
I had a similar experience with the oxycodon. I asked my neurologist if I could try and see whethet Targinact would suut me better (suggestion from Madlegs 👍🏻😃). And it does! Gentler than the pure ‘normal’ oxycodon with fewer if any effects the next morning.
I’m glad Targinact is working well for you, LotteM. Do you take it daily, or only as a rescue drug for times when your RLS symptoms break through your other meds (if you are taking any others)?
That study is being done by Dr. Winkelman, head of my neurologist's Sleep Lab. I looked into it, but participants need to already be on a regular dose of an opioid as part of their RLS regimen. So I'm not eligible. But I'll be following that closely.
The very comprehensive 2018 paper I mentioned before is: "The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome" ( ncbi.nlm.nih.gov/pubmed/293... , full text link upper right of page). Winkelman is a co-author, along with Silber, Earley, Buchfuhrer, et al.
Sounds like your syrup gets the methadone into your system faster. I'll ask my neurologist about that formulation, as that would make it a true rescue drug. Like you, I found there's no euphoria. But as I mentioned, I think I'll need to try 10 mg to see if that's effective (adjusting for the slower onset).
By the way, just got my hematologist appointment to discuss IV iron: August 17. Can't wait.
The docs at Johns Hopkins seem to be prescribing methodone fairly frequently these days for severe and/or refractory rls. Good to hear some personal experience with it. Methadone still sounds ‘heavy’ to me, as I know it is used to help heroine addicts to detox.
Well Lotte, it is 'heavy' in the sense that we have been socialised to see it as a sort of backstreet, illegal high for dropouts standing in line at a clinic. Poor creatures.
We are wrong. It is a highly effective drug, very particular to our condition, And it works.
And there is no longer much doubt that many of us are addicted to dopamine agonists, perhaps even more fiercely than a heroin habit. And that is indeed 'heavy'.
So, be unafraid of anything that may help, and will not harm if properly managed.
When I sip my sweet methadone syrup in the middle of the night I fancy myself a character out of Jane Austen, languishing on the chaise longue sipping laudanum, which was tincture of opium.
I sometimes wonder that laudanum ultimately found itself on the wrong side of the criminal code and yet alcohol - a destructive drug with nothing to recommend it medicinally and resulting in such dreadful hangovers - is so very socially acceptable - at times almost unavoidable. A cocktail sipped while wearing a silk dressing gown is a good look however - maybe even better than a spoonful of methadone.
There is a good body of research that suggests a strong link between low iron levels and augmentation on a d/a. It is also the case that the higher the d/a dose the greater the risk of augmentation and as you are increasing your neupro already I would second the suggestion that you address your iron levels asap. It is possible that if you get your iron levels up you might avoid the need for a d/a or at least be able to keep to the lowest possible dose thus reducing your likelihood of augmenting again.
I didn't know about the low iron / augmentation link, involuntarydancer. Thanks. In fact, I just dropped back down to the 2 mg patch today. The 3 felt like a heavy blanket over my brain; too much drug in my system for the whole day (I mostly have symptoms in evening/night anyway). I'll get the IV iron, then re-evaluate which if any meds to take. That may well involve reducing or eliminating the patch altogether (I've already eliminated pramipexole). I expect my options will then be some combination of periodic iron infusions (as needed); an alpha-2-delta drug (I've been on gabapentin for some time; trying pregabalin instead starting tonight); and possibly a low-dose opiate.
I hope the pregabalin works for you. I’m not an expert but I think that you are doing the right thing not to increase neupro and instead looking for another drug for breakthrough symptoms. A combination of drugs each at a low dose has afforded the best regimes for me. I take 100mg pregabalin (which is a lowish dose) as part of my rather complicated regime and I’m pretty sure it helps a lot even though pregabalin was useless for me on its own.
Have you tried Kratom? I find it great for breakthrough symptoms. Though i appreciate it’s not for everyone.
I would love to try an iron infusion but so far haven’t found someone prepared to give it to me.
I fully agree: like you, my intuition is that a combination of meds at low-ish doses is the best way to go. Especially if a DA is in the mix.
I have heard good things about kratom. However, Dr. B said that it is actually an opiate, so for now I’m sticking with low-dose oxycodone as a rescue drug when needed. Some are saying that kratom will become classified and regulated as an opiate - we’ll see.
I’m sorry you’re not able to find a source for IV iron. Keep trying; fingers crossed.
What time(s) of day do you take your 100 mg of pregabalin?
I take it about 8 or 9pm. I don’t find the timing of the dose is particularly critical, unlike the dopamine agonist. Dr. B. doesn’t like Kratom at all. I think there is some research to suggest that Kratom works on slightly different receptors to regular opioids but I wouldn’t take it in conjunction with an opioid nonetheless. Oxycodone should work well for breakthrough symptoms but I found it very quick to induce dependency and really unpleasant to discontinue so best to use cautiously and intermittently unless you plan to stay on it all the time.
I am not a recreational drug user and am uneasy about suggesting a drug like Kratom (I only heard of it when I began to research my rls) but it is definitely easier to discontinue than oxycodone.
Oh! I’ve just read through the messages on this post and realized I am in the presence of giants. The stoics, the epicureans and the campaigns of Marcus Aurelius - the Roman and the Rhodesian Ridgeback. I lowered the tone unnecessarily when I weighed in with accounts of street drugs and opioid dependency.
Not at all, ‘dancer. It’s very important that we remember to apply great caution when considering opioids as part of our treatments. Speaking only for myself, I’ve been able to use oxycodone from time to time without becoming dependent on them. I’ve used them during 2-week washout periods to wean myself off pramipexole. Nowadays, I will take only a low dose (5 mg) on occasion for breakthrough symptoms. Not ideal, but effective.
Well lordy lordy, you're the smartest kid on the block, Dancer, without a shadow of a doubt!
I was wittering on about Marcus Aurelius and Epicureanism because I had to endure one of the worst nights in a long time, and The Boston Optimist was helping me through it valiantly, from the other side of the planet. Thank you, Boston.
Give me slap if I wax too lyrical, I was just bouncing off the ceiling. MIldly insane.
I do try, you see, to do anything to help myself before I resort to my wee dram of methadone.
You crack me up Parminter. I'm glad you are cautious with your methadone dosage - we wouldn't want to lose any of your razor sharp wit and wisdom to those mind-numbing (but oh so welcome in the misery of the sleepless night) drugs. I hope you get a better night tonight though we will all be the losers if you are sleeping rather than waxing lyrical from your part of the planet, aided and abetted by the Boston optimist.
My 16 year old son is in Boston at the moment visiting a school friend's family. It's his first time in the US and he is sending home excited descriptions of the food - a cheesecake factory today.
May I tune in happily and totally with your last paragraph? I could very easily get hooked on incluttered thought. It would make may days, and nights, and life to have that back again.
I think Lotte, that until something - in this case, methadone - clears your mind of its intense involvement with the disease, and all the energy it must use, you cannot know what complete mental clarity is anymore.
Well, actually, for me it has been two things. Recently I switched to rotating ropinirol (3d) with oxycontin/naloxon (=Targinact; 4d) which so far (~5wks) controls my symptoms very well. And this morning I heard that I am granted full disability for the next 2.5 years. As the amazingly understanding consultant put it, this gives me the much needed break and time to find my optimal level of functioning. Because, over the past 3 years I have been haunted and pushed by my employer to produce, but without them helping me in any way, e.g. by providing me with tasks suited to my situation.
In sum, with hopefully long lasting quite calm legs (I ignore the occasional short-lived inconvenience) and as of today a workload lifted off my shoulders, my mind will soon find the peacr, calm and most of all joy of uncluttered thought and thinking.
Please keep tour fingers crossed that the effectiveness of my current rotation regime will last much, much longer than the usual 4-5 weeks. I am on the break of that moment (is that proper and understandable English?) and my hopes are high up.
In my case, LotteM, none of the meds work sufficiently on their own. This picture may change once I get an iron infusion(s) (still working on that) and will hopefully need less meds.
Thanks. Yes, I read this one recently. It’s what made me decide to go this route, and get a referral to a hematologist to explore IV infusions. Will keep you posted on that.
This was one of two very comprehensive and helpful consensus papers that came out this year, with many of the same authors. The other is the one on clinical practice guidelines for opiate use in RLS treatment. Both are very timely. We’re blessed with a number of experts who are growing increasingly knowledgeable and who really care.
Thanks parminter. Good job for spotting it and posting it. I have just read the abstract only and the thing that strikes me is the explicit mentioning of iron infusion for people with rls and ferritin <300ng/l! The value of 300 is way above the upper normal boundary - at least the ones I have been given with my blood results. I’ ll have a better look, also at the original papers (this is a review), but it may well help to convince out doctors to seriously consider the iron infusion option.
Someone on this site, from Australia, said their upper normal is 400, so goal-posts change from place to place.
And the happiest person on this site went from misery to marvellous when her levels went from something like 40 to over 600. All symptoms are gone.
The levels will not stay high for long, they will just drift down as our iron vanishes to the place where lost socks go.
Hi there, I have been on Neupropatch (now on 3 mg) for about a year and have experimented with times of application. It may sound strange, but at the moment it suits me to put it on just after my bath and before bedtime. I am sick and tired of having to be careful not to submerge my patch in hot bath. As to where to put it, I try to find a different place every 14 days, but outer upper arm, inner upper arm, under chest and above waist or above chest (but the latter often starts itching eventually). Picture on instruction leaflet is very good. I normally first clean my skin with something like Micellar cleansing water and then hold it down for 20 seconds, so it sticks really well. Good luck!
Thank you, Faypreston. I see that many patch users apply at various times of the day and even evening, often to good effect. So perhaps it doesn't matter much.
Hello optimist. I am brand new to this community but am wondering some of the same things. I am currently on a 3mg Neupro patch and Horizant tablet once a day. (600mg Gabapentin ext. release) I typically take the tablet and change out the patch around 5pm daily, but lately have begun to experience the creepy feeling and legs jerking right as I try to fall asleep. I also feel that on the nights I am able to go to sleep with no issues, that more often than not, the patch is placed on my upper body or midriff. The nights it is applied to my legs seems to be less effective. Have you experienced the same? I may try a morning application on the patch and keep the Horizant at 5pm to see if there is any change for the better.
lol, so many comments but so few answers. Here’s something that may help. T-max (time to highest blood concentration or C-max) is probably the best indicator of time to change patch - here, approx. 7.5 hrs prior to the typical time of the beginning of symptoms each day. Mine begin around 10pm so I change patches around 2pm each day.
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