First post… Could someone please share their experience coming off rotigotine patches, and what helped you throughout this experience?
Been on rotigotine for 4 or so years, and more recently started experiencing augmentation.
Was on 2mg, in August GP suggested increasing to 3mg but that hardly helped.
Previously on pramipexole and pregabalin.
Considering coming off rotigotine as not helping as before. Read the latest Mayo algorithm, assume the next option would be to gabapentin or combination therapy. Looking to book an appointment with Dr Jose Thomas to discuss this in Jan if possible (privately) as waiting for an my neurologist appointment for over 4 months now and still haven’t heard back.
Are there any other Doctors you’d recommend in the UK?
In the meantime, waiting for an appointment with the medical cannabis clinic to help manage the symptoms (though cannabis proves to be less effective lately).
Also going to request full iron assessment from my GP in the meantime and hope to get that ready before my appointment with Dr Thomas. The assessment could have been done years ago but can’t recall the results. Should this be monitored regularly?
Any other tips you could give in the meatime, before/while coming off Neupro?
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Artifcial
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You could do it one of 2 ways. 1) get 1 mg patch of neupro and then you would need to cut it in sixths and reduce by 1 sixth 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it. 2) the easier way would be to switch to ropinirole. One neupro = one and a half ropinirole, so with 3 mg neupro you would need 4.5 mg ropinirole. Ropinirole comes in sizes .25, .5, 1 , 2, 3 and 4. Then reduce by .25 mg every couple of weeks as above.
What was your experience with pregabalin? If you decide on gabapentin, beginning dose is usually 300 mg gabapentin Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg 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. Most of the side effects of gabapentin 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason.
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, eating late at night, 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 like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
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.
I have recently come off the patches after augmentation. I moved to gabapentin over a 3 week period. It wasn’t terrible - nothing like the horrors of coming off Ropinirole several years ago. However, even at a dose of 1800mg, taken 3 times a day, I still had difficult nights. I was also taking two 100mg, extended release Tramadol tablets. I have just replaced the Tramadol by buprenorphin, which is working wonderfully I am going to talk to my doctor about reducing the gabapentin. I hope this helps.
That's very interesting. I guess you can reduce more quickly than most. Withdrawal symptoms from Gabapentin: insomnia, headache, nausea, anxiety, diarrhea, flu-like symptoms, pain, excessive sweating, dizziness, confusion, and palpitations.
Others have given you great advice about reducing the Rotigitone and getting blood results.There are very few doctors who know anything about RLS and the few who do are still wedded to dopamine agonists. I used to recommend Prof. Walker at Queen Sq because he knew about the link to low brain iron and will prescribe iron infusions. He also used to prescribe Buprenorphine, but has now decided it causes tooth loss so will no longer prescribe it. Several of us are taking Buprenorphine and it does cause dry mouth and lack of saliva, but, so far, most of us haven't experienced tooth loss.
So, you could see him as long as you stand your ground and refuse to consider dopamine agonists. You've been on Pramipexole and Rotigitone and experienced augmentation on both. So augmentation would happen quickly on another DA.
Dr Jose Thomas in Gwent does not prescribe dopamine agonists, because he sees so many patients who have augmented. But that may be difficult to get prescriptions.
I spoke to Prof. Gavin Giovanonni about this, and he prescribes methadone for refractory RLS in his MS patients. But he's not seeing any new patients.
Dr Guy Lechziner at Guy's hospital is mentioned by a few in London.
I would ask in advance, before you see them, if they will help you reduce the Rotigitone patch because of augmentation, whether they prescribe iron infusions and whether they will prescribe opioids, including Buprenorphine or methadone, for refractory RLS.
Pregabalin when taken WITH a dopamine agonist doesn't help RLS. It can help many once through withdrawal though.
Pregabalin may work well for you after you get off Rotigitone and taken at night only, at the correct dose.
Good Morning Artifcial, my experience with Cannabis is mixed. You definitely want to stay away from the Savita type, as it will produce an altered state of consciousness. The Indica, is more relaxing, and usually very subtle. As for how it helped my RLS symptoms, I noticed little improvement. If you take one called RSO, it will knock you out, and you shouldn’t plan on driving anytime soon. Here in Oklahoma, THC comes in many forms, tablets, liquids, gummies, smokeable etc. I suggest you find a shop that’s been in business for a while and explain to the Technician what you’re trying to achieve. Good luck.
Since experiencing augmentation, I’ve told my GP I wanted to come off them. She said she’d get advice from a neurologist, and send me for some blood tests. 3 weeks later - mo response after chasing. It’s been unbearable, so decided to come off myself. I started missing work due to exhaustion so couldn’t wait for much longer.
I went down from 3mg to 2mg. It was bad, yes, but manageable bad. Like a bad day with RLS. But worth it. Then went down to 1 mg (4 or so days later), and oh man. No sleep for 3 days in a row, complete exhaustion, pain, everything, you name it. Couldn’t bear it so went back to 2 mg. The following day tried to go to 1 mg again but couldn’t cope, so on 2 mg again. Will give it a nighg or two to recover to see how it goes.
The problem is that my RLS is so bad that I cannot go to work, well barely do anything due to exhaustion, and cannot afford to be off work for much longer.
Called my GP earlier today, to ask for some opioids, sleeping pills or anything else that could potentally help to survive the withdrawal symptoms during this period. Was told the next appt in only in 3 weeks time. Blood tests still pending. Neurologist appointment still pending. Can’t get a GP appointment.
Another update - got prescribed medical cannabis, which worked quite well. Not magic, but definitely helps to a certain extent.
Questions:
- any ideas how to get opioids (or anything else that could help) if can’t get hold of my GP? Was thinking 111 or digital GP?
Opioids have not worked in the past, just made matters worse, but that’s probably the only option I’ve got now.
- has anyone been on pregabalin (which didn’t work), but then switched to gepabentin? Not sure if they’re the same drug, and whether that’s even worth exploring.
- any of you tried home tests to check serum ferritin levels?
- I have access to second opinion through a benefit provided from work - anyone tried that? Not sure if that’s an option worth exploring.
- how long have you waited for a neurologist appointment in the UK (on NHS)? Any way to expedite that?
- what’s the best way of exploring other potential treatment options, if GP help is pretty much non exsistent and neurologist appointments are nowhere to be seen - is switching GPs the only option?
- any recommendations for a private consultant in the UK would also be appreciated. Have seen some recommendations on this forum (and thank you @joolsg for recommending some above!) looks like the overall message is - not many know about RLS… will also do my own research.
- random one - what did help me (prior to coming off neupro, not anymore) was a back stroke/tickle before sleep… just put me to sleep, almost straight, almost every night. Too bad I can’t stay still for more than a few mins now due to withdrawal symptoms.
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