My GP diagnosed me with severe rls in 2010. I started with .25mg pramipexole (Sifrol) now taking .75mg and olmesartan/amlodipine for high blood pressure.
I have had rls before this but only occasionally.
He has now suggested an iron tablet Maltofer which I am starting today. I have a history of low iron, borderline anaemic at times. A few years ago I had two iron transfusions, I felt no improvement.
For at least one year my rls has been unbearable, daily. Very little sleep. I can have up to at least 14 attacks at night of having to thrash my legs about, tossing in bed only relief is to walk around at night. Hardly sleeping. I can get restless even in the morning. I'm standing and sitting from afternoons to bed time. This is also affecting my feet, plantar fasciitis. I have fitted orthotics now and no pain when wearing them, but have to wear them pretty much all of the time. So night time I also have pain from my feet.
I'm overwhelmed with all here, how the suffering with rls is affecting so many people.
Are we stuck with this for life? My friends do not understand it, I felt so alone.
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Pramipexole - and other dopamine agonists ropinirole and rotigotine - are no longer first line treatments for RLS amongst experts because for the majority they eventually lead to augmentation making RLS worse.
Amlodipine/olmesartan (Azor): some have no problems with amlodipine, but for others it can exacerbate RLS.
Presumably you had an iron test before your doctor suggested Maltofer - what were the actual numbers in the results?
You need guidance on very slowly weaning off pramipexole and moving on to either gabapentin/pregabalin or a low dose opioid. You might also move to an RLS safer high blood pressure med.
I've not been on these meds so look for replies from Joolsg , SueJohnson and others.
RLS symptoms can be controlled and you can get your life back!
Welcome to the forum. You will find lots of help, support and understanding here.
As Chris said the 2 blood pressure medicines you are taking may or may not make your RLS worse.
Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. 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. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....
As Chris said you need to ask your doctor what your ferritin and TSAT are. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Take your iron with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night 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. If your transferrin saturation (TSAT) is below 20, you may need an iron infusion. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
By the way I notice Maltofer is OTC so you probably have to pay for it and it is very expensive. You could instead get 75 mg to 100 mg of iron bisglycinate which would accomplish the same thing .
If your ferritin wasn't tested and a normal blood test doesn't, the next time you have a test ask your doctor for a full iron panel. Stop taking any iron supplements 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.
The maximum pramipexole dose is .5 mg so you are taking one and one half the maximum dose and it is still not working. You are suffering from augmentation and need to get off it as it will only get worse.
Although this seems counterintuitive I suggest you increase your dose slightly until your symptoms are bearable. Then To come off pramipexole reduce by half of a .125] tablet (ask your doctor for these if you don't have them) 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. Dopamine agonists like pramipexole and ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off pramipexole 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 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)."
If you can get an iron infusion to more quickly bring your ferritin up, that will help you as you reduce your pramipexole.
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...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, 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, 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'm so sorry that you are another patient let down badly by medical ignorance and lack of training. There are very few knowledgeable doctors in Australia or UK.Iron therapy, via pills or infusions is first line treatment now.
As you have a history of low iron/ anaemia, you would have responded well to an iron infusion BEFORE Sifrol was prescribed. One day, they will be first line therapy everywhere.
In the meantime, follow SueJohnson advice.
Until you get off Pramipexole (sifrol) completely, your RLS will keep getting worse. The drug feeds the disease.
Withdrawal is very tough, but your RLS will improve once you're off that poison.
You are on a VERY high dose.
Get the iron panel test and start iron supplements if percentage saturation is below 45%. Take 65mg ferrous bisglycinate every OTHER night to raise serum ferritin. It might lessen the severe drug-induced worsening you are experiencing.
In the UK, if a doctor fails to take full panel fasting iron panel blood tests, and fails to advise of the risks of Impulse Control Disorder ( over spending, gambling, overeating, hypersexuality) on Sifrol, that is a breach of duty and he can be sued for negligence. As Australia follows UK law, the situation is probably the same.
So, follow SueJohnson schedule and start to withdraw NOW.
Read all you can on this site, RLS-UK website and Dr Berkowski site at Relacs. The more you learn, the better you'll be treated.
There is hope.
I went through dopamine agonist withdrawal and my RLS is completely controlled by Buprenorphine.
Shumbah, in Australia is also on Buprenorphine. Read her posts and replies.
Thank you so much for all information. I will be reading a lot over this weekend especially your recommendations. I have now made an appt with my doctor and see him Monday 19th Feb.
My doctor had said Sifrol is not good to stay on for more than ten years, but that was all I thought there was. Last year the dose did go up to 4 tablets (.25mg per tablet) made no improvement. He said 3 tablets was the max. I dropped to 3 1/2 tablets Nov/Dec last year, then last month went back to 3. Would it be okay to drop to 2 1/2 tablets? To start getting off them. I am confident my doctor will help with new treatment.
Since July 2023 I have lost 28 kgs and regularly exercise with swimming and walking. No longer want to eat ice cream, sweet foods and now drink a lot of water daily.
I do not smoke or drink. I enjoy my one coffee I have in the morning. I make, with fresh ingredients, a lemon/ginger/tumeric/lemon mix that I have with soda water daily, is this something best to not have anymore if I have to take an iron supplement?
I have PTSD/Complex Trauma and been on medication since about 2012. The last 6 years I've been getting wonderful support, still ongoing. My mental health has improved, still much to work on. I stopped all my meds with that about 18mths ago. I do get overwhelmed with information and do not remember all information/facts. My support network understand and I feel safe and comfortable with them.
Sifrol should be reduced very slowly over 6 months minimum. You are on an extremely high dose and have been for years. Your dopamine receptors will be so accustomed to dopamine, that any reduction will produce withdrawals.The usual schedule is drop half a 0.088 pill every 2 weeks.
You can take your iron supplements while taking turmeric and ginger.
Dietary triggers do not affect everyone. Obviously a healthy diet low in sugar and processed food is good for everyone.
All anti depressants trigger/worsen RLS so it's good that you are off them already.
Good luck with your GP appointment. I hope he/she agrees to research and learn the basics of RLS and help you through withdrawal.
Hello and congratulations on your new healthy lifestyle! Be proud of all the changes you've made in taking care of your body and mind. I wish you well with getting off Pramipexole and feeling better with the RLS treatments to come.
No you probably are not stuck with this for life if you change your diet permanently. The most common cause of RLS is inflammation and the most common cause of that inflammation is the food we eat. To reduce the inflammation you need to avoid all processed food which only includes sugar and alcohol but even incudes bread and fruit juice. This will remove the refined carbohydrate, seed oil and artificial preservatives from your diet.
I live in Melbourne, Australia and have found a wonderful doctor who understands what we go through.He recently moved to Queensland so now our consults are via zoom.
He helped me get off sifrol using opoids to help me cope.I am now on Targin long term but my RLS is definitely less severe.
Google Dr David Cunnington(Sleep Specialist).. I thoroughly recommend him to everyone.
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