First diagnosed in my 20s. First medication in my early 40s was Sinamet. Then another drug I think was ropinerole but not certain. I’ve been on Pramipexole for approximately 10 years. Slowly increasing dosage till now on .625 nightly. Thank goodness I found this blog and Sue Johnson and Jools and other treasures.
I am not sure whether to try gabapentin or pregabalin to start. When I last saw my neurologist she said go back to .5 gm Pramipexole and take 100 gm of gabapentin. That made no difference except I felt drowsy during the day and I needed to go back to .625 of Pramipexole. She said just stay on the Pramipexole. We might consider opioids next.
I have now sent her the John Winkler video so I hope she can now help me during add on Gabapentin stage and the withdrawal from pramipexole. I read you keep increasing the gabapentin to a level you can tolerate.
I have few questions that someone might be able to help with:
1. How do you know what you can tolerate .?
2.Approx. How long does it take for symptoms to settle with each increase of gabapentin?
3. Do I wait until I reach a certain minimum of gabapentin before starting withdrawal from pramipexole?
.4. Might I need some opioids to help with the pramipexole withdrawal and then ditch them down the track.
5. Are my dopamine pathways/ receptors etc likely to be too damaged after a decade on DAs to be able to withdraw from pramipexole?
6. Is pregabablin a stronger and therefore more likely alternative to help get off the pramipexole?
7. Is there any chance after years of iron levels in the normal range that I might actually need IV iron ?
8. Anything else I should know?
Thank you in advance for your time and generosity
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Iloverls
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Here is my normal advice for coming off pramipexole and starting gabapentin.
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 (ask for a prescription of these if needed) 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. 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Dopamine agonists like ropinirole and pramipexole and the Neupro patch (Rotigotine)are no longer the first line treatment for RLS. Gabapentin or pregabalin are. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [Since you are over 65 if you are susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If 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 need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects 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.
If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
To answer your questions:
1. You know by trying.
2. Not applicable - or not understanding your question. What symptoms from what?
3. Answered above
4.Yes
5. It's possible they might be damaged but that doesn't affect your withdrawal - it affects whether gabapentin/pregabalin will work.
6. Neither pregabalin nor gabapentin will help your withdrawal and as far as strength they are equal.
7. Ask for your ferritin number. Doctors will say it is normal but what is normal for others is not normal for those of us with RLS. Report back here with what is is and we can give you some advice.
Sadly, as you have spent decades on different dopamine agonists, the withdrawal will be difficult. Gabapentin and pregabalin do NOT stop the severe withdrawals and increased RLS. They start to work about a month after the last dose of Pramipexole. So you will experience withdrawals.So, follow SueJohnson withdrawal schedule and start gabapentinoids about a month before your last dose of Pramipexole.
Gabapentin and pregabalin do work well for many people that have been on dopamine agonists for a long time.
The only way to avoid severe withdrawals seems to be Buprenorphine. It is prescribed in Australia so your neurologist may consider it. Quite a few people have reduced Pramipexole as they slowly increase Buprenorphine. This study by Dr Berkowski shows that it is effective.
Experts recommend serum ferritin levels of over 100ųg, preferably 200ųg/L as it can reduce augmentation and withdrawal symptoms. IV infusions are the fastest way to raise serum ferritin levels but you may have to push for one. They don't work for everyone, particularly if dopamine receptors are damaged.
Good luck and I wish you strength getting off Pramipexole.
Thank you. Very helpful. I didn’t realise that the gabapentin etc wouldn’t help with withdrawal symptoms. And it will take quite some time. Scary but necessary.
The problem is that doctors also do not understand this! If a doctor watched a video of the average elderly RLS patient going through dopamine agonist withdrawal, it would ensure they NEVER prescribed them again.I only know of around 4 or 5 people on this site who have avoided a brutal withdrawal.
But, once through it, the RLS settles and you realise how bad it was on dopamine agonists.
Knowing how difficult it would be actually helped me. Because I knew there was light at the end of the tunnel.
Take 2 weeks off work/family/social occasions for the time when you drop the last dose and arrange for a friend/ family member to be with you for the first 4 to 5 nights. I got zero sleep or rest until day 5. Cannabis gave me 30 mins sleep on night 3 and saved me from throwing myself out of the window.
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Taking Gabapentin and Tramadol whilst weaning off Pramipexole
THC and augmentation
Neurologist appointment tomorrow
