I have been on Dopamine meds since 2010 and am presently on 2mg Neupro patch which I was switched to in 2016 by a Neurologist.
The inevitable Augmentation is now so bad I need to come off it. I had a trial of Gabapentin in 2015 but developed a very serious depression ( never suffered it before or since). I now rely on my GP as we moved to a different region and I lost access to the neurologist.
Please give me some advice about how to reduce the patch in order to stop dopamines completely…. Not as easy as tablets to reduce! Any suggestions as to how I can minimise DAWS and future medication???
I would like to go with a positive plan to my GP. I live in the NE of the UK.
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Annieapple
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If you don't have 1 mg patches you need to have your doctor prescribe them. To come off it cut the 1 mg patch in quarters and reduce by one quarter 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. But in the long run, you will be glad you came off it.
Since you suffered from depression on gabapentin there are 2 possibilities. You could ask for a prescription from your doctor for trazodone or Wellbutrin antidepressants that don't make RLS worse. Or you could try pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose.
Sue thank you so much for this comprehensive reply!! I will go armed with this information. I have always checked any medication against the RLS list so not a problem. Thanks to the original advice of the Neurologist in Cambridge my Ferritin levels are checked every year (TSAT) and are good.. I had chemotherapy in 2004/5 that caused peripheral neuropathy & RLS although the latter wasn’t diagnosed until 2010… my internet research & a willing GP at the time to refer me to a Neurologist.
I am ever so grateful for your input on the patches and will make a GP appt to discuss the whole thing! Xx
What RLS list are you talking about? I doubt it includes everything. I have 42 pages single spaced of medicines that are OK or not OK for RLS although I include the alternate names for each so would probably be only 1/3 as long if I didn't.
Do you know what your ferritin is? Doctors will say it is good when what is good for others is not good for those of us with RLS.
Both of your medicines for high blood pressure can make RLS worse. Some medicines that are safe for high blood pressure propranolol (Inderal, Hemangeol,InnoPran), Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. And then there are the ace inhibitors such as Zestril (Lisinopril, Qbrelis, Prinivil) and Perindopril (Coversyl). Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Discuss these with your doctor.
The usual advice is to start pregabalin 3 weeks before you are off Neupro. Beginning dose is usually 50 mg . It will take 3 weeks before it is fully effective. After that increase it by 25 mg pregabalin every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin daily." With gabapentin you don't want to take calcium within 2 hours as it will interfere with the absorption of gabapentin but I am not sure not sure that is the case with pregabalin.
One problem is that withdrawal from Neupro can also cause depression so it may be difficult to know if the pregabalin is causing depression and so can a low dose opioid that you use to help you get off it at the end.
Have you had your ferritin checked. If so what was it? 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 and fast after midnight. Have your test in the morning. 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.
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, 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.
A non pharmacological thing that usually helps blunt some of the RLS symptoms for me is taking a hot bath with Epsom salts before bedtime. I think the warm feeling afterwards helps calm the nerves a bit. I don’t think the epsom salts do anything but I add them anyway.
Yes, you only need a small dose and in my case after suffering since I was a young teenager (hereditary in my family) and also I have fibromyalgia and rls is also a big side effect so double bubble. Totally got rid of it after, going on 40 years, I had extremely severe RLS which could literally last for days at a time and I've tried every medication known to man..Good luck and let us know how you get on xx
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