Hi RLS community, I just joined. I have had RLS for 23 years but it has been fairly successfully treated with Mirapex although I have been on the max dose for a couple of years. I have been focusing on my other problems and not the RLS because as long as I took the pills by 7pm I could go to bed. The whole thing has been a mystery because I also have high iron and Ferritin and am back to getting phlebotomies to remove a pints of blood. The iron is in my liver and is effecting that.
Have been ignoring the RLS due to dealing with the leukemia, have been on treatment twice for the leukemia but right now I am off and waiting till it gets bad again and will get back on chemo.
I still have extremely low gammaglobulins and the IVIG treatment is now making me have an allergic reaction so I can't take it. So I am very immune compromised.
Also recently have become allergic to some antibiotics, drugs and bees!
I have been on Healthunlocked for years on another forum and now I just found this one. I had no idea there could be something called augmentation. Still don't understand what that is. Is that what is causing this terrible increase in the RLS? I didn't know there were specialists for the disease. Does anyone know what kind of dr is a specialist. I am having trouble locating one. I am in U.S. near Phila. Baltimore area.
So is it true I have to wean off the mirapex and take narcotics to help the withdraw?
Do any supplements make RLS worse? I am on a bunch.
I don't take anything with iron because my iron is too high already. I have never been able to figure that one out.
Can anyone school me on this? It is affecting my daily living more than all my other problems right now. I have been taking Lunesta for a number of years since a combo of chemo drugs was giving me insomnia. Now I am hooked but it doesn't really work anymore.
I am so tired of taking one drug or another just to offset the symptoms caused by another drug.
I am 63 and I don't know what to do about this RLS. It is affecting my life worse than the cancer!
Any help is greatly appreciated!
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maggiesgrandmom
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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. So it sound like you are suffering from this and need to come off the Mirapex. To come off Mirapex, reduce by .125 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 yes 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 Mirapex and ropinirole are no longer the first line treatment for RLS. Gabapentin is. The beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off Mirapex although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg 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. Most of the side effects of gabapentin 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 daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. 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...
DEAR SUE I VALUE YOUR ADVICE SO CAN YOU TELL ME IF CARBAMAZEPINE (TEGRETOL} IS A DOPAMINE AGONIST? IF SO AM I LIKELY TO SUFFER AUGMENTATION . ALSO SINCE BEING ON THIS MEDICATION ( I ONLY STARTED ON IT ROUGHLY TWO MONTHS AGO ) I HAVE DEVELOPED VITILIGO IS THERE A CONNECTION BETWEEN THE TWO
Yes a number of supplements can make RLS worse. If you list what you are. taking, I can tell you whether that is the case. Since the Lunesta is no longer working you might want to try Ativan or Ambien.
Sue, Thanks so much for all of this info. I take various B vitamins, zinc, quercitin with C, magnesium with valerian root. tumeric (curcumin).
Also thanks for all the info. I can't bear the thought of reducing the mirapex but I will try. I will try to get a specialist to help me. Can you start the gabapentin while weaning off the mirapex?
Yes and you should start it 3 weeks before you are off Mirapex, but it will not help fully until you are Mirapex for 3 weeks and your symptoms have settled down. That said some people find it does help starting it while you are weaning off Mirapex.
As far as doctors, a sleep doctor or a neurologist is best to treat RLS. Johns Hopkins in Baltimore has an excellent quality center for RLS so I would suggest them. 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, 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 if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga.
Thanks Sue , I just tried to get an appt at johns Hopkins and they are saying they are not accepting new patients and have not for 2 years. Do you think this is correct?
Yes - Unfortunately it is possible. I tried to get an appointment there a couple of years ago and they were not accepting new patients although I thought I had heard of some people in the meanwhile being accepted. To find a doctor in the US, use the following link. A Quality Care Center is your best bet if you are lucky enough to be near one. Otherwise check for a doctor. Https://rls.org/treatment/find-a-he... However although the doctors have been submitted to this list by someone who used them and found them knowledgeable. They still might prescribe dopamine agonists which you don't want and/or they might not prescribe opioids if you need them. The best way to find out if they are knowledgeable and uptodate is to ask if they have read the Mayo Clinic Updated Algorithm on RLS.
Sue has given you excellent advice. Augmentation means severe increase in severity of RLS symptoms caused by Mirapex.
You are near one of the best RLS centres in the USA. Dr Earley at Johns Hopkins in Baltimore. However, he usually requires you to slowly reduce the Mirapex and go through withdrawal without any help as he wants to see your baseline RLS without any dopamine affecting meds. That's very difficult. Especially if you've been on a high dose for years.
Most people need opioids to get through withdrawal.
However, many of us have managed to get off high doses of Mirapex or Requip and it is possible.
It's difficult but your RLS will be so much better once off Mirapex.
I just tried to get an appt at johns Hopkins and they are saying they are not accepting new patients and have not for 2 years. Do you think this is correct? Thanks alot Jools.
That's unfortunate but not surprising. There are so many hundreds of thousands suffering badly with RLS, the waiting list at Centres of Excellence will be very long.
You can do it on your own without seeing anyone. Most of us have to do that because there are no knowledgeable doctors.
Start now and slowly reduce as Sue directs.
Print off info on augmentation and ask your main doctor to help you by prescribing low dose opioids for the last 4 weeks of withdrawal and by prescribing gabapentin or pregabalin to start around 4 weeks before your last dose of Mirapex.
I think under the circumstances you would be a good candidate for buprenorphine.
A very wise person said to me if something has changed go back to basics and take a good look at what it could be.
When something changes I look at what I have changed especially vitamins and I stop them. If it fixes the problem I then add them back in one at a time.
Fake sugar in large does can upset RLS.
I’m in Australian however I travels to Maryland Boltimore to the John Hopkins
To be honest Dr Sara was useless.
Dr Glen Brooks New York prescribes buprenorphine also Professor John Winkelman in Boston .
I would recommend that you look for a video on youtube by Dr Thomas Seyfried called "Cancer a mitichondrial disease with metabolic solutions". He recommends a ketogenic diet which would also reduce systemic inflammation which is also contributing to your RLS.
I was going to suggest Johns Hopkins also but see that you have already tried without success. I would just echo joolsg that if you read widely around the subject and print off the important studies etc, you may be able to work with your own primary care physician to find the best course of action. This forum is full of incredibly knowledgeable posters.
I suffer a rare blood cancer and take oral chemotherapy daily. I know it is not the same as you suffer but I need to be very careful what supplements I take so I know a bit about this. I do not think people with hemochromatosis should be taking vitamin C and you say you take this. Also some of the B vitamins are doubtful, especially B12 as it increases red blood cells.
Just be careful with supplements as they can do more harm than good.
Might I also suggest that you might contact Dr. Buchfurher by email. You could tell him all that is wrong with you and that you cannot get an appointment. He might well have some suggestions as to how you would get an appointment.
Someone on this site will tell you how to contact Dr. Buchfurher. He is a leading expert who will answer all emails sent to you.
HI Jelbea , I didn't know that about Vit. C!! And I have been taking it since covid. I will also see if I can find an email for Dr. Buchfurer! Thanks so much!
Hi maggiesgrandmom - There are lots of reports on vitamin c and hemochromatosis on the internet. Vitamin C helps you to hold on to iron which is definitely not what you need.
Hope you get help soon. RLS makes everything so much worse for us when we are already suffering other major ailments. Good Wishes
I recommend Dr. J. Steven Poceta at the Scripps Sleep Center in La Jolla, California. He specializes in RLS. Desperate people like myself travel from far away to see him; he has been a lifesaver for me.
Because of your location, I was going to suggest Johns Hopkins. Are there any other accredited sleep study centers in your area, perhaps affiliated with a local university? Or a neurologist who specializes in movement disorders in your insurance provider list?
For myself, after a decade of moderate success with a daily low dose opiod [10 mg of Norco], my new neurologists at the Mayo Clinic switched me to the new miracle treatment - dopamine agonists, in my case Requip. After some relief, my symptoms always came back worse than before - until I was at the high dose of 6 mg with no relief. When my neurologist disappeared for a month on summer vacation, I chewed nicotine tablets for immediate, short term relief for an hour or so in order to be able to sit so as to review two years of scholarly literature on RLS [found in a database at the university I was employed in], and first learned about dopamine agonist created augmentation and ICD [Impulse Control Disorder].
Informing my doctors, I began weaning myself off prozac and 6 mg of requip - with or without their help. To replace the prozac, I was proscribed welbutrin [told its one of the few antidepressants that does not increase or cause RLS; prozac and other SSRIs DO increase or cause RLS]. I tapered off requip, stepping down .25 milligrams at at time. My ICD improved almost immediately. However, I experienced horrible symptoms of DAWS [Dopamine Agonist Withdrawal Syndrome] for two years, including not sleeping for 3 days each time I lowered my dose. After stalling at 1.5 mg of requip for a year, I drove 5 hours to see Dr. Poceta who prescribed opiods to help with the remaining taper. I now experience moderate relief on opiods. I'll never take another dopamine agonist - they are from the devil as far as I'm concerned.
tldr: Get off dopamine agonists slowly, find a doctor who will prescribe opiods to help with this - I recommend Dr. Poceta at Scripps in La Jolla
So sorry for about all of your health issues. You have received outstanding advice here. Contacting Dr. B is a great idea. He will get back to you quickly. His email is somno5586@outlook.com.
Wishing you the best and stick with this group for excellent support.
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