Hoping you’ll remember me. I’m Judith & live in uk I’m 74.
my rls specialist In London increased my pregabalin by 100mg. I’m now on 200 mg am, 100 mg late afternoon & 200 mg b4 bedtime, so 500mg daily. I also take thyroxine, cocodamol if needed during the day.
The Neurologist at the neurology hospital in London also wants to study me in hospital over 1/2 nights. Not sure what they do tbh, but mentioned that with the increase of pregabalin, it should help with rls. But doesn’t. I was on 2mg rotigotine and mentioned that with increased pregabalin my rls should improve It hasn’t. She told me to reduce rotigotine to 1mg at this point.
so I’m sitting here at 2.45 am with chronic rls.
im tempted to increase rotigotine to 2mg but May regret it.
I’m waiting to hear when my overnight stay will be at hospital and hang on but getting more worse.
I also suffer with fibromyalgia and chronic osteoarthritis and unable to walk now due to painful knees and hips.
my husband has been diagnosed with dementia and at my wits end. Where have our years gone I say. Stress more than likely makes things worse.
would appreciate your views. Did try Brufen patches but made me ill.
judith.
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As long as you are on rotigotine the pregabalin won't really help much.
Did you go directly from the 2 mg patch to the 1 mg patch? If so that was a much too steep reduction. You should draw lines on it to divide it into 6ths and reduce by 1/6th every 2 weeks.
I would go back on the 2 mg and let your symptoms settle and then start the reduction as above.
I second Sue. And if her schedule is still too tough to handle, go even more slowly and reduce by smaller amounts.
And if the pregabalin is only for the RLS, consider lowering it to only afternoon and evening doses. But take one adjustment at a time. And let your body guide you. The main thing is to reduce the rotigotine.
Having a terrible time with rls or could it be augmentation. Been constant for 72 hours, no sleep. Feeling awful. Cut a tiny piece off the 1mg patch and do that every 2 weeks. Saw gp too as having major osteoarthritis flare ups too in legs so increased my anti inflammatory. Appreciate your comments Sue. Thought reducing rotigotine would be less invasive than Ropinirole but just the same for me. 😩
It's the withdrawal as you cut from the 2 mg patch to the 1 mg patch. I advised you to go back up to 2 mg. let your symptoms settle and reduce by 1/6 every 2 weeks so after your first reduction you would be taking the 1 mg patch plus 5/6 of another 1 mg patch.
HI judith. I've no idea if you drink alcohol, but I have recently stopped drinking purely to lose weight. I'm chronic RLS my whole body, my left side is worse than the right. I'm on Ropinirole, amitriptyline, Pregabalin. However, since not drinking (I would have a drink or two each evening, I'm not an alcoholic. ) I noticed that RLS has massively improved! I have slowly managed to withdraw from Pregabalin totally and will start on reducing my amitriptyline soon.
I am half sad I can no longer enjoy a gin or glass of wine, but it's been worth swapping the alcohol for lime and soda. Not only for my RLS but also losing weight and it's cheaper!
Also, the Pregabalin and amitriptyline are known to increase hunger pangs so it's a win win for me.
Of course I've not cured my RLS and it was bad last night because my feet were cold. My electric blanket can do the foot end of the bed so that's what I did. But it's alot lot less since stopping alcohol.
I'm hoping I can come off nearly all of my medication eventually.
I'm also aware that it may be a fluke and could hit me hard again in the future and I could find myself back on the meds. But for now, I thought I'd share my new and welcomed findings.
Thank you for your reply. Glad that reducing your alcohol has helped you. I don’t drink myself as I don’t really think of it. I use a back positioned electric blanket which helps my back after having 4 ops on spine and hot water bottle for feet plus I use a padded cushion to put under my knees for extra support. That may help you too. Take care
I'm glad you found something that was making your RLS worse.
Ropinirole is no longer the first line treatment for RLS. Actually gabapentin or pregabalin are so I am curious why you decided to come off the pregabalin instead of the ropinirole. If it was because it didn't work, then that is not surprising because it won't work while you are on ropinirole.
Since you still have RLS, it seems likely you are suffering augmentation. 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.
To come off ropinirole first off check if you are on the slow release ropinirole ). The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.
To come off ropinirole , reduce by .25 mg 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.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole (pramipexole) although it won't be fully effective until you are off it for several weeks. After you are off ropinirole for several weeks 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, 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 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)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 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 us know and we can advise you further.
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...
Some things that can make RLS symptoms worse for some people are alcohol as you found out, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (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, C, 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.
Judith, I’ve just sent a reply to someone on here and just read this. I’m not sure I’m going to be any use to you at all except to give you sincere sympathy. I’m also in the UK,
My walking is also compromised due to my MS, and I think lack of exercise worsens things, so would only advise keeping really well hydrated during the day, not being too hot in bed at night and doing what exercise during the day that you can.
Read the answers on here and will try the no alcohol thing again, if only to combat weight gain. Oh joy. Not sure if you drink wine or anything, but maybe worth a try.
Hope your husband is alright, and that things go well with the sleep clinic, at least it’s something. Sending lots of love and positive thoughts x
Very kind of you to send me a message. I live in Bromley, Kent. I don’t drink alcohol simply because if I did it would make me feel worse. Yes lack of exercise doesn’t help. Unfortunately I’m now on crutches as my knee, hip and now back are in severe spasms with osteoarthritis. Can’t win. My only joy has been gardening so I sit and look at it deteriorate. Yes reading answers which are varied and interesting. Unfortunately RLS isn’t the only bugbare others are a lot worse especially osteoarthritis. Not nice getting older☹️ You take care too. Where in 🇬🇧 are you?
I’m in West Oxfordshire. JR Hospital. I like them a lot, but they are still trying to get me on to DAs!!! I think the training for doctors in RLS is non-existent!
I’ve got a touch of arthritis too. Because it’s a challenge actually moving, I tend not to!! Trying to get out of this bad habit.
You take good care, sending positive vibes through the ether!! (sure that will be a great help!!😃 x
hello Judith - just some information about the sleep study - I had one in March at the centre for neurology Queens Square and found the experience much less daunting than I had anticipated, so that was a positive. However on the negative side I still haven’t received any results - this is because my next appointment there is 31st July - so presumably I will be given feedback / suggestions then.
So a positive and a negative… however the ward is very welcoming and the staff were very helpful… food was ordered in the evening and I found the whole experience a good one - I hope that helps. …. Dawn
(Also that’s an awful lot of pregabalin to be taking…. I’m surprised you can move at all- im on 150mg and it still knocks me out and affects my balance - I really hope you manage this find a more effective blend of medication soon )
Yes that’s where I’m going queens square next to grt. Ormond street. Waiting to hear. Won’t be long.Ty for the low down. Sounds good. Pregabalin doesn’t knock me out surprisingly. If anything I suffer from insomnia
I'm afraid that all your health problems and your husband's dementia are due to your diet, you're probably eating far too much sugar and starch and probaby ingesting refined seed oils.
I’ve lost 2 stone so my weight is good and joined weight watchers. I don’t eat sugary food or fatty foods and watch what I eat. Don’t drink either. Don’t have refined seed oils tho not sure what they are. Been watching my diet now for 3 years. No issues there. Dementia has nothing to do with diet! You’re misinformed there.
Refi ed seed oils are commonly labeled 'vegetable oil'. Fat doesn't make you fat, it's an alternative way to get calories without raising blood sugar levels and hence excessive insulin. youtu.be/AgCUcPX77Lo?si=gZj...
Plus I don’t like your comments in 1st sentence. Totally inappropriate, and your assumption. Do not tell me about my husband’s diet is wrong hence dementia. This is uncalled for and you know nothing about our diets. This is meant to be a rls forum/reaching out line not an assumption about diets for dementia.
To get off of a dopamine agonist, most times an opioid is needed and you DO need to get off of it. I don't know if it is possible to get an opioid prescribed where you are but if you look at the protocols for switching out dopamine agonists like ropinerole, opioids are often a short term fix. Methadone at a low dose, like 5-10 mg works wonders, and will help the transition, but you can also try oxycodone ER, codeine or even tramadol (although tramadol occasionally also augments). Very few people taking opioids for RLS have any trouble with addictions. Arm yourself with some documentation from online about opioids for RLS if you think there is any possibility of convincing your doctor. Gabapentin does absolutely nothing for me and often doesn't work with previous DA use. I have better luck with a hot bath or Calms Forte although either is only a little bit of help. And yes, it took me 4 months to wean off of pramipexole and it was hell. I couldn't have done it without opioids. Also, try an electric massager for your legs. Dipyridamole is a new drug that will be part of the RLS protocol that I am adding to my regime and seems to be very helpful. It has something to do with adenosine and iron transport and is an already approved drug for stroke and not a controlled substance. Check it out. I now get at least 6 hours of solid sleep with the methadone and dipyridamole.
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