I've been on Ritigotine Patches for RLS for several years now and I'm really not sure they help anymore. I don't like being over-medicated, so I weaned myself down to just 1mg per night but I can't seem to stop that last 1mg without an awful side effect. I know, it's such a low dose that I should be able to simply stop, but when I tried this is what happened:
I was a passenger in a car (thank god I wasn't driving), when suddenly I became overwhelmed with nausea, so much so that I had to put the seat down and lie back. Within a few more seconds I had lost control of my limbs and my speech became slurred. Luckily we were close to a hospital and hub took me directly to A&E. Hub tells me that my breathing was very strange also. In the A&E they really didn't do much, just gave me intravenous fluids as they said I was very dehydrated (I actually drink plenty). At the time, I didn't associate the episode with the fact that I had gone a couple of days without the ritigotine, but there were no other changes that I can think of.
I asked my GP how I can wean myself off and she told me that my body was telling me that it needed to keep the ritigotine and I should stick with the low dose. That does sound like nonsense to me.
I really want to cut the 1mg in half for a few nights, then in half again, but I can find no information on this method anywhere so I'm worried that it might be the wrong thing to do in case it leaks the meds all at once or something.
Has anyone experienced anything like this? Any advice greatly appreciated.
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OldTired
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Cut the patch into quarters and reduce by a quarter every 2 weeks 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. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) 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 (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. 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 divide the doses on pregabalin) Most of the side effects of gabapentin or 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 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin) daily." If you take magnesium take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them. 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 atHttps://mayoclinicproceedings.org/a...
Have you had your ferritin checked. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice. It is especially important to get your ferritin up when you are suffering from augmentation which you are currently doing.
What you experienced was withdrawal from dopamine agonists. It causes anxiety, confusion, nausea, sweating palpitations, breathlessness.It's harder to get off dopamine agonists than heroin or crystal meth for the vast majority.
Why am I not surprised that your GP and A&E haven't got a clue? Oh yes, because RLS and the problems with these drugs isn't taught at any stage during medical training.
Go back on 1mg patch for 2 weeks then follow Sue's advice to cut in quarters and reduce by a 1/4 every 2 weeks.
Your RLS will become worse with each reduction so ask GP to read up on dopamine agonist withdrawal syndrome and to prescribe low dose opioid to deal with the increase in RLS symptoms.
Raising ferritin above 100, preferably 200 may resolve your RLS and you may not need meds.
If you're on any meds that trigger RLS like anti depressants, anti histamines, statins or beta blockers or PPI gastric meds, ask for a detailed review & consider RLS safe alternatives.
If your RLS is still bad after raising ferritin, eliminating trigger meds and stopping the patch, you will need to take either Alpha2Delta ligands ( Gabapentin or pregabalin,) or a low dose opioid like Oxycontin, codeine or Buprenorphine.
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.
I was using the patch with success for about 2 years. However, I was augmenting and didn’t realize it. My dosage kept increasing until I reached 9mg and at which point I started to reduce. It took me about 22 months to finally come off. The manufacture indicates that these patches should not be cut, I did. In fact in the end the pieces were so small it was very difficult to apply. My reduction schedule was much slower than suggested here. My body would let me know if I was going to fast and I would simply increase the dosage. My advice would be do this very slowly and go ahead and cut the patches. Good luck to you
well, restless legs syndrome typically does not go away, so moving off of the patches might require that you take some thing as an alternative… Is that what you’re doing or are you just going cold turkey hoping that you can tolerate the RLS?
I really don't know what I'll do once the patches are gone. The Sleep Clinic discharged me once I was on the patches and that was a few years ago. The doctor there said that the clinic was too busy and the team is very small so they could only cope with new patients; once on treatment patients like me were just discharged.
in our clinic, if we are prescribing dopamine agonist like the ropinirole patches, we invariably will have people back on a regular basis to make certain that they’re not having problems with those drugs because they can be problematic. The answer is to withdraw from the drug, but you have to be going on to another one otherwise the RLS problem will Totally recur and probably at a more troublesome level of intensity if you were augmenting to the ropinirole patches!
You need to ask your primary care physician to refer you to a sleep specialist who has more time for patients. If you have to travel a little bit, so be it… Nothing you can do but you want to be under someone’s care who has experience with sleep disorders, such as RLS. The restless leg foundation, and the international Restless legs study group, recommend drugs such as gabapentin or gabapentin enacarbil (Horizant) and pre-Gabalin (Lyrica) for RLS. If you have a primary care physician, he or she may very well be able to prescribe one of these drugs to help you if I sleep specialist is not readily available. I don’t think they will be asking too much of your doctor.
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