Any success from Pramipexole Augmentation to Gabapentin or similar?

[FloridaRN]

Hello,

Has anyone successfully transitioned from Pramipexole to Gabapentin and had success with their RLS symptoms?

Thank you. 🙏

[SueJohnson]

I successfully transitioned from augmentation on ropinirole to gabapentin and my symptoms are under control.

[FloridaRN in reply to SueJohnson]

This is wonderful news! VERY encouraging. I'm delighted for you.

[Josana13 in reply to SueJohnson]

How much Gabapentin are you taking?

[SueJohnson in reply to Josana13]

1500 mg

[marigold60]

I went from pramipexole to gabapentin after augmenting. It took a while and it wasn't a pleasant experience but I got through it and I rarely get even mild rls symptoms now

[FloridaRN in reply to marigold60]

Fabulous news.

May I ask how long it took to come off Pramipexole and did you commence the Gabapentin before you completely stopped the Pramipexole? Did it take long for the Gabapentin to work fof you?

[marigold60 in reply to FloridaRN]

It took me about 3 months to get off pramipexole, gradually reducing the dose. The neurologist had originally expected me to stop it straight away, flush it out my system and then start the gabapentin! I lost faith in him then and did it my way following good advice from this site. I begun the gabapentin alongside reducing the pramipexole, slowly. I also took painkillers to help with withdrawal symptoms and used ibuprofen gel. This was about 3 years ago. It took a while to feel normal again maybe a couple of months after stopping pramipexole altogether, but the gabapentin is really working for me. I hope this helps.

[FloridaRN in reply to marigold60]

Thank you so much for your good wishes and VERY helpful advice. I'm so happy for you. 🙏

[Simkin]

no one mentions Rotigotine Neupro patches. I was on them for years with HUGE success until they stopped working.

Then had great results from pramixepole but they then stopped working.

Coming off them was frightful. After a few days break I was put on gabapentin with thus far no success.

[Joolsg in reply to Simkin]

Dr. Buchfuhrer says that many RLS patients who have been on Dopamine Agonists for years and suffered augmentation do not respond to gabapentin or pregabalin.

What dose are you on and when do you take it?

They didn't work for me and that's why I had to switch to low dose opioids.

[Simkin]

Very interesting what Dr Buchfuhrer says.

I am on 600mg for breakfast. 600mg at lunch. 900mg at night????

[SueJohnson in reply to Simkin]

Do you have symptoms during the day? You asked previously if you should increase your gabapentin, and the answer was yes, but apparently you have not done so. Increase your nightly dose by 100 mg every couple of days until you find the dose that works for you. According to the Mayo Clinic Updated Algorithm on RLS, "most patients required 1200 to 1800 mg". Take 600 mg 1 to 2 hours before bed, and up to 600 mg 4 hours before bed, and if needed 600 mg 6 hours before bed as it is not absorbed as well above 600 mg.

[Simkin in reply to SueJohnson]

thanks Sue. The reason I have not increased the gabapentin yet, as you suggested, is because my GP says at 2,100mg a day I am already way over the maximum dose recommended by the Mayo clinic. Also he & the neurologist think my problem is that my ferritin levels are 40 instead of 75, so they are hoping to bring that level up with iron tablets. You seem to have a huge amount of knowledge of RLS. I wonder if you yourself are a GP or simply speaking from your own experience.

[SueJohnson in reply to Simkin]

From the Mayo Clinic Updated Algorithm on RLS - " Most RLS patients require 1200 to 1800 mg of gabapentin daily, but doses up to 3600 mg daily can be used. " Https://mayoclinicproceedings.org/a... Show this to your doctor. The problem is I assume that your night time RLS is not under control, and 900 mg is not in the 1200 - 1800 range. You never answered my question whether you have symptoms during the day. If not, there is no reason to take it during the day. Yes get your ferritin up - but to 100 not just 75. But that will take at least 3 months and you are suffering in the meantime. After you get it up to over 100, you can reduce the gabapentin very slowly to avoid withdrawal effects and see if the ferritin is enough. Since your ferritin is less than 75 take your iron tables with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. When your ferritin becomes between 75 and 100 or if your transferrin saturation was below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after after 3 months since you are taking iron tablets or 8 weeks if you later have an iron infusion. No I am not a doctor. I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others. Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.

[Simkin in reply to SueJohnson]

Sue thank you so very much. This is all extremely helpful and I will indeed discuss this with my doctor. No, I never get RLS during daylight hours but only from about 1am onwards and it drives me insane. I survive by having a rest in the afternoons. You give me hope at the end of the tunnel. I am 72 and as I have got older the symptoms have got worse (like most things!!). Having read your email I now feel I have lots of options to try.

[SueJohnson in reply to Simkin]

Then don't take the gabapentin during the day. Instead take it all at night. However you may not need that much. Ask your doctor for 100 mg capsules and add 100 mg every couple of days to your night time dose and reduce the daytime ones by the same amount. Don't stop your daytime ones yet. Once you find the dose that works for you then very slowly stop the daytime ones or you will have withdrawal effects. Remember to take your night time dose divided into no more than 600 mg as I mentioned above.

[Simkin in reply to SueJohnson]

thanks Sue. Lots to think about but all positive.

[Purpleyam in reply to SueJohnson]

Hi Sue, I've just started Pregabalin 50mg for 4 weeks now, in order to reduce and quit Pramipexole. I'm encouraged by your results and thanks for all the information. I have afternoon-early evening augmentation. I can't ever sit and read in the afternoon as I'm immediately squirmy. It just worsened from recent hip surgery and all the meds interfered with my RLS. I am taking .125mg twice a day, with the Pregabalin in between. I am 63 years old and have been on Pramipexole for over 10 years. I see my family doctor tomorrow for the 'next step' - likely an increase in Pregabalin I hope. I'm learning that this weaning may take up to 3 months, I'll be patient as long as the symptoms are managed. Any advice or cautions for me? thank you. Teresa

[SueJohnson in reply to Purpleyam]

Welcome to the forum. You will find lots of help, support and understanding here.

Hip surgery can definitely increase RLS for 2 possible reasons 1) withdrawal from opioids they gave you and 2) they may have given you anesthesia medicine that can make RLS worse. Luckily both will wear off.

As far as reducing the pramipexole, I would wait until the above settle down. Then to come off pramipexole, reduce by half of a .125 mg tablet every 2 weeks or so. 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. If you find even that is too much to reduce by you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

On the pregabalin you can increase it by .25 mg every 2 days up to 150 mg but I would stop there as it won't be fully effective until you are off pramipexole for several weeks and your symptoms have settled. After that you can continue to increase every 2 days until you find the dose that controls your symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin daily."

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...

If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let me know and I can advise you further.

If you haven't had your ferritin tested, since you are suffering from augmentation, it is important that you do so.

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, eating late at night, estrogen including HRT, 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, fennel, 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, CBD, 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, vibration devices, using a standing desk, listening to music, meditation 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.

[Purpleyam in reply to SueJohnson]

Thanks for this great information. Yes I'm getting ferritin tested, I am careful with the food and supplement triggers. I do add collagen into my morning decaf coffee though. Last night I started on 100mg Pregabalin and had a very decent sleep. However, whoa! was I drowsy this morning and through the day still. Is this 'hangover' going to normalize and dissipate over the next few days? I'm likely going to need a bit higher dose in order to slowly slowly stop the Pramipexole completely.

[SueJohnson in reply to Purpleyam]

Most of the side effects of pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms

[Symbionforlife]

I was taking Pramapexole, experienced mood and back pain side effects and transitioned back to Ropinirole from which, over several years time, devepoloped significant augmentation. In an attempt to transition to Gabapentin on the advice of my neurologist using 100 mg steps I found no relief up to 300 mg. I was encouraged to increase this dose until I could find relief and finally just quit Ropinirole "cold turkey"and maintained a Gabapentin dose of 1200 mg per day, taken nightlty. A week of Hell ensued during that transition but I just hung in there for that week and came out of it with my RLS about non-existent! I reduced my dose of Gaba to 900 mg per night, taking 600 mg around 7:30 - 8:00PM and another 300 mg around 10:00- 10:30PM just before bedtime to aid absorbtion. My RLS is well under control with occasional dificulty, likely as result of alcohol or sugar intake. As additional notes, I take "Gentle iron" in the morning and before bedtime (to maintain a ferritin level of 100 mcg or more) as well as 1/2 dropper of CBD oil (1500 mg strength). That allows me to sleep like a baby and control my RLS. I wish you a successful transition and control of your RLS!

[SueJohnson in reply to Symbionforlife]

Two things - you should take the 600 mg of gabapentin 1 to 2 hours before bedtime and the 300 mg 2 hours before that. You will find it works better that way. Secondly, there is no advantage in taking iron twice a day - the second one is practically cancelled out. Your are best to take it in the evening and if you want twice as much, take twice as much at one time being sure to have it separated by 24 hours from the next dose.

[Symbionforlife in reply to SueJohnson]

Thank you for your advice and suggestions Sue. I've attempted a few iterations with GABA dosage and found the 600/300 better, for me at least, in controlling RLS in the early evening better. Having said that, I will reverse as you have suggested and give it another try. Iron at night, as opposed to the morning, has been suggested by others on this forum as well. I'll definitely try the PM approach and observe results. Many thanks.

[SueJohnson in reply to Symbionforlife]

iron is absorbed better in the evening which is why that is suggested.

[Cobobay]

hello, ive just come off Pramipexole as ive been on them for around 10 months and they have stopped working so have now been put on Adartel and will swap back when they stop working and go back o Pramipexole, ive had no side effects from either or any problems.

[SueJohnson in reply to Cobobay]

Why would you want to switch from one dopamine agonist to another. You said in your profile that "I'm totally fed up with this RLS " If so wouldn't you want something that continues to work instead of bouncing from one dopamine agonist to another?

[Amrob]

I went from pramipexole to pregabalin. I had augmented on pramipexole (took it for just over one year). I came off it with absolutely no difficulty. I started pregabalin and have been on it since (approx 7 years).

[Purpleyam in reply to Amrob]

That's very encouraging to hear. I've just started my 2nd month of pregabalin and look forward to weaning off pramipexole. I hope I have your success!

[ChrisAIA]

I transitioned off Ropineral due to augmentation and am now taking 300 mg of gabapentin about 1-2 hours before bedtime. it works very well. I have only been on Gabapentin for 45 days so this is a small sample time, but I'm pleased with the results and haven't had any augmentation.

[Salisbury71]

I have recently transferred from Pramipexole to Pregabalin. But it has taken some time to work out the required dose and when to take it. The data sheet with Pregabalin Lyrica doesn't mention RLS and my GP has no experience of it. To be honest the best thing I have found is that I need to take 300 mg Pregabalin and one 0.18 Pramipexole at about 5-6pm in order to get a night sleep.