Hello I wonder if anyone can give me some advice please I started on the Neupro patch 1mg I increased the to 2mg October 2021 due to rsl getting worse this controlled my rsl to a point but still got breakthrough nights, it became obvious that the patch was making my rsl worse so I started to take Pregabalin 10 days ago reducing the patch and building up the pregabalin to 300mg per day, I've had terrible nights prior to this because of the patch not working and since taking pregabalin due to transition period. I'm now building up to 600mg today and half a patch. Last night was horrendous the worst yet with torso, arms and legs driving me mad and stopping me sleeping. The gp thinks 900mg is probably the dose I will need. I don't know what to do for the best now do I keep with the half a patch for now and keep building up the pregabalin gradually. I can't stand another night of this but don't know what to do or if I'm doing it right. Any advice would be more than welcome.
From Neupro patch to Pregabalin - Restless Legs Syn...
From Neupro patch to Pregabalin
Pregabalin takes 3 weeks to be fully effective and won't be fully effective until you are off the Neupro. 600 mg is the maximum and you shouldn't need that much. Do NOT go to 900 mg. The Mayo Cl9nic Updated Algorithm on RLS says that "Most RLS patients require 200 to 300 mg of pregabalin daily." I would advise you stay at 300 mg and once you are off Neupro for several weeks, then add 25 mg every couple of days until you find the dose that works for you. If you find after increasing to 600 mg it still doesn't work then your dopamine receptors have been damaged by being on dopamine agonists and you should very slowly come off the pregabalin or you will have withdrawal symptoms. If you slowly come off you won't have any. In that case your option is probably a low dose opioid. I know you are suffering but hang in there. It will eventually get better. On the Neupro patch reduce by .25 mg every 2 weeks or so by cutting the patch. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. If you take magnesium take it at least 3 hours before the pregabalin as it can reduce its effectiveness.
Thank you so much Sue I follow your comments and they are always great advice, my doctor doesn't know anything about RSL - so I've gone from 2mg of the patch to zero yesterday in 10 days I'll take a step back with the patches and go forward from there with that , I'm made a mistake in my message I blame it on a sleepless night, I'm not on pregabalin it Gabapentin, so what do you think about the dose for that please. thank you again.
OK on gabapentin, one would increase by 100 mg. You could increase to 900 mg now but I would hold it at that. Take it 1-2 hours before bedtime. Since you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you eventually need more than 1200 mg, take the extra 6 hours before bedtime. The usual effective dose is 1200 to 1800 mg. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
I meant cutting the patch, not curring it.
Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice. When you get your results, if your ferritin is not over 100, post them here and we can give you advice.
Meanwhile - Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute
Thanks so for all your help and information, I'll read through and come back to you with my medications, thanks so much again.
Your last posts indicate you were using Ropinirole a few years ago and pregabalin.
If you've been on Dopamine Agonists for years and they stopped working, you will be suffering augmentation ( a severe worsening of RLS). Pregabalin won't help RLS when that happens.
Your GP has switched you to the patch but that won't work either because once you have hit augmentation, your D1 dopamine receptors are 'over excited' and scream out for their dopamine hit, driving a worsening of RLS.
As you've been on DAs for years, you have to slowly reduce over months with the help of a low dose opioid. As you've just started the patch, can you ask to go back on Ropinirole as it's easier to reduce that by 0.25mg every 2 weeks.
Do not increase pregabalin. You're on the maximum dose and the reason it's not touching your RLS is because you are still on DAs. There is absolutely no point increasing pregabalin.
Ask your GP to prescribe codeine or tramadol or oxycodone to help with the ropinirole withdrawal symptoms and explain that withdrawal from dopamine agonists is often worse than withdrawal from heroin.
Once you're down to the last 0.5mg of Ropinirole, the withdrawal symptoms become more intense. The 2 weeks after you stop, you'll get little sleep and 24/7 severe all over RLS for days. That is when you need low dose opioids. I used 50mg tramadol every 4 hours for around 2 weeks. Cannabis will also help.
Once through that 2 weeks, your RLS will settle and THEN the 300mg pregabalin will start to cover your RLS
So DO NOT increase pregabalin. Switch back to 2mg Ropinirole in 0.25mg capsules. Reduce 0.25mg every 2 weeks. Take 50mg tramadol when withdrawal symptoms kick in.
In the meantime, ensure bloods are all above recommended levels for RLS ( serum iron above 60, serum ferritin abive 100).
Print off the Mayo algorithm and hand to your GP and ask them to read up on Augmentation and dopamine agonists. Sadly, it's not taught in UK and GPs are unaware of augmentation and how difficult withdrawal is.
rls-uk.org/augmentation-reb...
mayoclinicproceedings.org/a...
And please do consider reporting the worsening RLS as a side effect via the Yellow Card scheme as GPs will continue to treat RLS poorly until augmentation is red flagged for dopamine agonists. See the pinned posts at the head of the page
Hi Jools sorry I have mixed everyone up I blame the lack of sleep 😴 it’s gabapentin the gp has changed me too. My last post was years ago so I’ve been on the patch for a good 3 years. I’ve no idea why I agreed to switch from pregabalin back to a DA. So I was on 2mg patch and started taking gabapentin 10 days ago how much patch would you say to go back up to please and what do do re reductions.
If you have only been on the gabapentin 10 days, I would wait to increase it as it takes 3 weeks to be fully effective.
Ok. Exhaustion does that.
You're experiencing withdrawal symptoms so slow down on reducing from the patch. Ask for 1 mg patches and go back to 1 + 3/4 patch. Then reduce by 1/4 patch every 2 weeks. You may need tramadol or codeine as the RLS worsens with each reduction. It should then settle and you reduce again. That way the withdrawal symptoms will be more tolerable. Stay on 600 to 900mg gabapentin until you reach 0.5mg of the patch. The worst withdrawals happen when you drop the last dose and last around 2 to 3 weeks. You can increase gabapentin up to 1200mg at that point in 2 x600mg doses and it should start to help.
It works well for most but if your RLS isn't controlled after a month on gabapentin, consider switching to a low dose opioid.
coming off any RLS drug is a complete nightmare in my experience but my neurologist has always said you must come off one drug before starting a new one.
Now I am off neupro and am taking gabapentin I cannot bear to even think about trying something new.
Thank you all, I slept really well last night went back to 1.75mg of the patch as advised and took 500 mg gabapentin 2 hours before bed, GP started me on 300mg so I've already built up to 500mg. Joolg & Sue I can't thank you enough for you advice and Simkin I have heard that advice about coming off one before starting another but in all honestly I couldn't do that it's been bad enough trying to come off the DA in 10 days whilst taking 300mg Gabapentin and I'm only thankful I came to this forum for advice as I couldn't have carried on like that, but well done If you managed to do it.
Hello VJ29 I know exactly how your feeling having been there myself, desperation, helplessness and feeling very alone. No one understands what you’re going through unless they’ve experienced it themselves. I was on 4mg Neupro Patches and like you they started to make RLS worse so my GP prescribed ROPINIROLE big mistake as I’m now attempting to reduce my dose and have so far down from 6mg to 5mg but am dancing round the house and loosing sleep. Maybe you could have a look at the Mayo Clinic Website which has a lot of good info on RLS which you could show to your GP.
I have an appointment with a GO on the 24th October and hope to come out with a plan to get off Ropinirole and onto a course of treatment that won’t make the condition worse over time. I will advise on the outcome in due course but I do find a hot shower or Bath with lavender essential oils helps short term but maybe long enough for you to fall asleep. Activities that you have to concentrate on can also help, I’ve actually walked 4 miles in a night round the ground floor of the house, fortunately it’s not difficult as it’s open plan and listen to audiobooks on YouTube. There is help out there from people who understand the condition. I wish you well and hope your RLS can be brought under control quickly.
Best wishes from one of the many many thousands of sufferers wandering the nights away.
Heart warming comments HipHop1972 and yes please report back for me and as you say the many thousand
I went from ropinirole to Neupro 1 mg five years ago. That was gradually increased to as high as 6 mg which was prescribed by a lame neurologist. I researched and found any dosage above 3mg did no good with RLS so asked my GP to reduce that to 4 mg, which was done with no increasing of symptoms, also no decrease. I went to another neurologist who was not happy to hear of the Neupro dosage. He prescribed gabapentin to help with decreasing the Neupro. A year ago I decreased to 3 mg Neupro, after I had been on gabapentin for a few months. That decrease went without any increase in symptoms. I was taking 1800 mg gabapentin by then. My RLS symptoms would come on during the day and be pretty bad at nights. Sleepless nights were my norm at least once a week with some nights with maybe three hours of sleep. I took the gabapentin throughout the day with more at night. My neurologist also prescribed 10mg hydrocodone and up to 12.5 when decreasing. The decrease from 3mg to 2 mg was more difficult for two nights. Last December I took the plunge from 2 mg to 1 mg patch and went 42 hours without sleep and my son urged me to use cannabis, which is legal in Maine. I used half a 10mg gummie and got four beautiful hours of sleep. The following nights I vaped cannabis when I needed to sleep. Also I had iron infusions when my ferritin level went below 100. I knew when my level was low because symptoms increased and I had repeated infusions about every three months. So I timed the decrease in Neupro when my ferritin level was at least 100. Of course this slowed down my decreasing schedule. Also I had hip replacement surgery in April which slowed the decreases. However I was patient and determined. With Sue’s encouragement, I began cutting the patch down in quarter decreases. My neurologist hadn’t heard that was possible, but went along with it. I was down to .75 mg before surgery. Another decrease went in May then in June. Each decrease came with an increase in symptoms that seemed to level off after a couple of weeks. I continued on the same meds and vaped cannabis to help with sleep when symptoms made sleep improbable. The end of July I had another infusion and waited for that to kick in. On Labor Day I celebrated with becoming patch free! I was surprised to even get three hours of sleep that first night. For the first patch free week symptoms started late afternoon throughout the evening, but not constant but at a bearable intensity. I did vape cannabis to help sleep. After two weeks, the symptoms noticeably were lessened and maybe came in the late afternoon or early evening with a slight flare up at bedtime. The gabapentin is doing its job. Now I have no RLS symptoms during the day, sometimes in the late afternoon or evening and sometimes at bedtime. My RLS is 90 % better! I do still have insomnia every night, but manage six to seven hours sleep with one longer stretch of maybe five hours. I don’t have the spasms that plagued me for years. I don’t need the 2a.m. Showers or standing for hours at night. The worst symptoms are the buzzy feelings in my feet and lower legs. Sometimes standing for a few minutes helps with that. However I use IcyHot and within five to ten minutes they stop. I feel like I’m managing my RLS and feel accomplished with my journey to say good by to dopamine agonists. I know it took along time, but I didn’t have any real strong withdrawal symptoms and I thank Sue for advice and encouragement. It was great to tell the pharmacy that I won’t refill that prescription again, and I save hundreds of dollars a month.
That's great that you are off the patch !!! If you are taking 1800 mg of gabapentin, I hope you are taking them in divided doses of 600 mg each. One 1 to 2 hours before bed, the second 4 hours before bed and the third 6 hours before bed as they are not well absorbed above 600 mg. You could switch to 300 mg pregabalin and not have to divide the doses. And if so you might want to increase the dose to 325 mg to completely control your RLS. For sleep you might ask for a prescription for Ativan or Ambien. Or safe OTC options for insomnia include: valerian, chamomile, hops, L-tryptophan, 5-HTP, glycine, and GABA
Just a quick update I’ve had 3 wonderful nights sleep so keeping to the current mix of meds till after my holiday on the 31st Oct for a week hoping that It continues to work. Will then reduce the patch further. I’m also taking iron and magnesium. Deesee well done for being patch free these journeys are a nightmare for us! We don’t have cannabis legally in the UK for many but glad it helped your sleep.
I'm now taking 1 patch and 900mg of gabapentin I did have some RSL last night for the first time in a few weeks. I forgot that I needed to split the dose of gabapentin as Sue suggested so that might be the issue I'm hoping. I need to speak to the doctor about another prescription for gabapentin would you stick with the 900mg and reduce the patch again after 2 weeks at this dose that will be the 21st Nov. ?
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