I have had RLS for decades. I am 88. Recently methadone 20mg stopped working. I was sent to a pain specialist. I asked for Buprenirphine. It was apparent he knew nothing about RLS. I got up to 20mg patch. He would not order sublingual. He told me to use as much pramipexole as I needed for breakthrough symptoms. I am using up to 4 tabs of 0.125 mg daily. I have many frantic bouts of desperate symptoms. He added in Palexia 100mg twice daily and wants to reduce the buprenorphine to 15 mg.It helped but still desperate attacks of R ls. I am up most of every night. Get about 2 hours sleep.i am to use an exercise bike and meditate.I should not read research. Think more positive. Think outside the box.
Help please. I live in Australia near Sydney.
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wairoa36
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Your problem may be the pramipexole. When did you start it?
It is a DA that is no longer the first line treatment for RLS because of the danger of augmentation and and you could be augmenting on it. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. This means you need to get off it.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole reduce by half of a .125 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly especially if you haven't been taking them very long. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer but in the long run, you will be glad you came off it.
The buprenorphine blocks other opioids from working so the Palexia won't help you.
Wairoa36, have you been taking Pramipexole all the time you've been posting on here about being on methadone?If so, that is why methadone stopped working.
Total waste of time to increase methadone or switch to Buprenorphine if you are still taking Pramipexole.
Pramipexole up regulates D1 receptors and they SCREAM for their hit of dopamine causing very severe RLS which will ALWAYS break through methadone and Buprenorphine.
If you actually are still on Pramipexole your neurologist should be sent back for training. He should know this!
And follow SueJohnson advice.
Get off the dangerous drug that is causing the severe RLS and stopping methadone from working.
Sadly you will now have to go through brutal withdrawal and the methadone will not help.
I've now come across 3 people in your position. Their doctors foolishly believed methadone and Buprenorphine can be used alongside dopamine agonists.
Are you under the care of a sleep specialist / neurologist as well?
I wouldn't expect a pain management specialist to be across RLS.
If you need help with both pain management and RLS, typically you'd need to see two specialists and then suggest that they talk to each other to determine what medication/approach is appropriate.
Thank you all for your wonderful help. I got off DAs a long time ago , with the usual agony. But I did it . I did it because of all your specific advice here. I was never on DAs with Methadone or other narcotics. Then had methadone for over 2years . At first it worked wonderfully but then slowly stopped being effective.. When it was no longer helping much at all my sleep specialist referred me to my current rehab and pain specialist——this guy who knows nothing about RLS.
So I am only on the Buprenorphine Patch 20 mg which he wants to reduce, and has added in the Palexia 100mg sr.
He also wants me to take Mirtazadine for sleep. I haven’t started as I’m wary.
I had resorted to sporadic pramipexole as a last resort occasionally to relieve frantic attacks.Im not sure it helped. On your advice , I will stop it completely. I was using about 4 per day —0 .125 mg.On methadone I got 4 or 5 hours sleep. Just a dream now.
I have had little more than 2 hours sleep for weeks
I thank all of you for your practical informed advice.
If you restarted Pramipexole- your D1 receptors will instantly be up regulated again. Sadly, stopping suddenly will cause withdrawals. So you need to reduce slowly and will very likely have a difficult few months /weeks.
Definitely do not take Pramipexole again and do NOT start Mirtazadine. All anti depressants worsen RLS.If you are now only on the 20mcg patch , is it helping?
Most people taking the patch report that it wears off after 4 to 5 days. So they put a new patch on at day 4 or 5 and leave the old one in place.
The Buprenorphine patch should work that way.
If not, you could ask for sub lingual Buprenorphine pills
The usual advice applies. Anti depressants,sedating anti histamines, statins, beta blockers, diuretics and PPI meds all worsen RLS.
Your serum ferritin needs to be monitored and kept above 100ųg ,preferably 200ųg.
Mmmmm. And told you to take Pramipexole as needed after you had been through agonising withdrawal!Just shows how little he understands RLS! RLS follows the dopamine cycle. That's why it's worse in the evening and during the night.
You say sporadic pramipexole. If you took it 2 or fewer times a week, you should be able to stop it cold turkey and maybe even 3 times a week. Any more frequently then you need to reduce as I said above.
Pamiproxol is very addictive I'm on 0.088mg at night. Still horrendous but it's not taken serious here in UK. I'm on a sleeping pill and once I do get to sleep must be OK. Every morning I waken to my right leg going up and down like im treading water. Appropriate really as I feel like I'm drowning. Arthritis, Hand closing (carpol tunnel) headaches forgetfulness hernias and wrestless Legs. Be glad when they legalise assisted dieing. That all the assistance your going to get in UK after retirement.
Periodic limb movement disorder. It's when the legs or arms move on their own. It usually happens during sleep and one may not be aware or it although a sleeping partner usually is. Many people with RLS have it and it is harmless. It is treated the same way as RLS is.
Put PLMD in the search box to see other's posts on it.
It's the RLS where you have the urge to move that is not harmless. I think you have both. The waking up to your right leg going up and down like your treading water I assume is not voluntary. You are not moving it. That's the PLMD.
P.S. It is plenty annoying and if it keeps you awake at night it is not harmless. But compared to that horrible feeling of RLS where you feel you have to move your legs and which for some is painful, by comparison it is harmless. I guess I shouldn't have used that word.
RLS isn't worse than PLMD and vice versa. Using words like harmless to describe a condition really minimises people's suffering. In my case, i would describe RLS as a minor annoyance and PLMD a cause of major suffering. But i don't tell other people that their RLS is harmless.
I agree with practically everything said on here. Unfortunately, that DA will prevent you from getting relief from buprenorphine. I don't understand why your doctor doesn't agree with taking the sublingual form, though. I've never taken the patch, but have heard from others on here about how the patch doesn't last until the next dose. I've never had that problem with the sublingual. I don't know if this would help you, but when I augmented on a DA years ago, I took kratom to help me get off of it. It worked beautifully and very quickly. Then I was able to start fresh with the buprenorphine. Good luck to you!
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