I'm trying to transition off of Pramipexole (Pram) which I've been taking for over 20 years. The drug has become less effective in recent years, which I recently learned is expected for this drug. I suggested to my doctor that I use Pregabalin in combination with the Pram to gradually eliminate the use of Pram. He didn't like that idea for a 90 year old (me) because Pregablin increases the likelyhood of falling and because of the constipation problem with it. Instead he gave me a prescription forCarbidopa-Levodopa to be used wth Pram. After I got home, I looked up the side effects of C-L and was dismayed to find that one of the side effects is insomnia. Insomnia is already one of my problems, and I certainly don't want to make that even worse.
I would appreciate comments from others to learn what you have found successful in transitioning off Pramipexole.
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robertff3401
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Welcome to the forum. Carbidopa-Levodopa is just another DA (dopamine agonist) like ropinirole. Yes you are augmenting on ropinirole and need to come off it. Yes pregabalin can cause some dizziness, but it is worth it to manage your RLS. I am 82 and have some dizziness but it wears off an hour or so after I get up and it is not bad. In the meantime, I just use the wall or the edge of the door casing or other things to walk around. Even if you had to use a cane, it would be worth it. And I have no constipation and most people do not have constipation on it. If you do, that too can be managed. 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. 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. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 25 mg pregabalin). 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 25 mg every couple of days until you find the dose that works for you. Take it 1-2 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. If you take magnesium take it at least 3 hours before or after pregabalin as it will interfere with the absorption of them. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." 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. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. 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... If your doctor continues to refuse to prescribe pregabalin, change doctors. If you tell me where you live, I might be able to give you the name of a doctor who is knowledgeable about RLS.
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, 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.
might as well be dead [ morning thyroid med then breakfast with minax + irbesartan for b/p 75 mg lyrica then paracetamol for back pain few glasses of water then 5.30 pm dinner, another minax +75 mg lyrica then RLS starts so in between wandering around, showering and sitting on computer with red hot feet with stretched tight skin, i take a sifrol now i have to wait for arms to stop jumping but my thumb and little finger joints become unbearably painful so put deep heat on them and wrap in small crepe bandages, its 9 30 pm my husband goes to bed and i come back into study and onto computer sights that tell me how to cope with constant itching and RLS.... all to no avail.. now ive managed to get a script for paracetamol + codeine while this new doctor does blood investigations only 20 so have to be very careful and make them last i have been told last week i have blood in my urine which isnt surprising all the pills i take. i did have nephrytis as a child and small vessel vasculitis last year all of which affect the kidneys, i also have mild Von Willabrands.. periphial neuropathy in toes and 21 years ago suffered from breast cancer having said all of that my gran suffered from perniciuos aneamia and she lived to be 97 yrs old forgive my spelling if there are mistakes my brain gets quite foggy at times and i was best in school at spelling 70 yrs ago 🙄😂😂😂😂good luck too you all heres hoping for a cure for insomnia oh!!!! there is one the long sleep.
Sue you mentioned to me in a previous post that if I provided a list of supplements I take you could tell me if any are on the list of supplements which make RLS worse. I forgot to send you my list, so I'm doing so now. I would appreciate your comments about any of these that I should not be taking because of my RLS. Multivitamin (Mature Multi from Costco), PreserVision Areds 2 Vitamins for Eyes (recommended by my ophthalmologist), Vitamin B1 (Nature Made 100mg), Turmeric (Qunol, 1500 mg), Vitamin D3 (2000 IU), Probiotic (Nature's Bounty), CoQ10(300 mg. Costco Kirkland. Recommended by my PCP because I take Pravastatin for high cholesterol ), Magnesium(Nature Made, 400 mg. Take every other day), Natrol vegetable/fruit capsules, Iron + Vitamin C (CVS. I just started taking these just over a week ago after I found that my ferritin level was 66), 85 mg aspirin ( I have A-fib) and alpha-Lapoic Acid (400 mg, antioxidant).
Those are all fine. On the iron take it every other day at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. Since you take a multivitamin which contains magnesium and calcium take them at least 2 hours apart since they interfere with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron until you get your ferritin up. Also antacids interfere with the absorption. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after after 3 months.
Thanks so much Sue. I appreciate your input. By the way, you also suggested that I let you know where I live so that you could possibly suggest a neurologist in my area. I live in Arlington, TX between Dallas and Ft. Worth. I received the a recommendation for Dr. Gregory Carter at UT-Southwestern, but looking at all he is in charge of and involved in I suspect it would be 6 mo to a year before I could see him. Any suggestions you have would be appreciated.
The best choice unfortunately is not close to you and is what's known as a Quality Care Center which means it's one of the best in the country is the Houston Methodist Neurological Institute. It's possible they do telehealth so you could contact them to see. All the other recommended doctors are either just as far away or are not neurologists.
I have also been on Mirapex for over 20 years. My GP was supportive of me having a prescription for Mirapex and Pregabalin and for me to manage the transition. That was nearly two years ago. In that period, I very slowly reduced my Mirapex from 5 x 0.088 mg tablets to 2.5 (yes, I am cutting them in half), and my pregabalin dose is now at 250 mg. As I read most posts, I also follow all the other relevant advice posted on this excellent forum. I have found it a prolonged process, but I feel like I am getting there. As for pregabalin - I have no apparent side effects, certainly not constipation or dizziness. I am 18 years your junior, so I cannot comment on the age-related balance issues.
Thank you for your comment Mr. Vimes. Looks like you have the transition from Mirapex well under control. I'm just 3 days into my own transition process, so I appreciate learning about what other people have experienced. My GP suggested that I should be able to safely accomplish my own transition in about 8 weeks. If I encounter problems along the way, I will stretch the process out a bit longer. Thanks again.
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