I have augmentation and have only reduced my sifrol from .250mg to .125mg in 9 months.My body is screaming for me to increase it back up again.
My sleep specialist is happy to keep prescribing codeine which I now need every night around 3am …. I am now addicted to codeine as I get no sleep at all if I do not take it each night.
I am not motivated to continue to wean off sifrol as my sleep specialist told me that 50% of people end up going back on to sifrol eventually and the other 50% become reliant on other meds( targin, bupremorohine etc) to control their rls symptoms.
Is there ANY member out there who has successfully weaned off sifrol and doesn’t need to take ANY meds for their rls???Are we just replacing one horrible drug with another to keep our sanity?
I fully understand that sifrol actually makes rls worse over time but I am 75 and just want some quality of life.
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Retiredlady
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Yes many people have gotten off sifrol which is known as mirapex or pramipexole is other parts of the world. Your sleep specialist is wrong. Very few people go back on sifrol having gone through the suffering of augmentation and finally getting off it. I would suggest several things. Try reducing it by a very small amount. Shave just a little off the tablet and wait until the increased symptoms have settled before shaving a little more more. One person used a compounding pharmacist who took the solid medication and rendered it into a liquid so that they could reduce it in incredibly small amounts. You will suffer but the end result will be worth it. Second, codeine is a weak opioid. Ask your doctor for buprenorphine which is stronger and whose half life is at least 24 hours so you won't be waking up at night. Third since your transferrin percentage is so low at 16%, even though your ferritin is 174, ask for an iron infusion. Many people need a ferritin of 300 to 400. And the iron infusion will help with your augmentation. Fourth, although you gained weight on gabapentin you might want to consider pregabalin. Although they are 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. If you take calcium don't take it within 2 hours. You will find very quickly if you have the same problem and can come off it. Start at 75 mg and wait 3 weeks and then increase it by 25 mg every couple of days but I wouldn't increase it to more than 150 mg until you are off sifrol and your symptoms have settled. Or you could stay on 75 mg longer to see if you start to gain weight. And yes it is likely you will have to take other medicine after you are off sifrol. 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...
I to have struggled to get off Sifrol been on it for 13 years. During covid I managed to reduce my sifrol from 2.5 tablets a night to 1.5 tablets a night but really struggling as now impacting me in during the dat. Have tried gabapentin but didn't find it helped much. Also tried clonazepam which left me feeling sleepy and not a medication I want to be on long term. I used to take pain killers with codeine which worked well but are no longer over the shelf. I could try Buprenorphine but the opioids scare me and dont want to replace one problem with another. Would love to get off Sifrol as the dose I now take doesn't really do anything but if I reduce the dose I get no sleep. I have recently tried medical cannabis which I find helps as makes me feel sleepy and so fall asleep quicker.
It's hard but you can do it ! We are all here to support you.
You can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. Taking it slow will reduce the symptoms you get from withdrawing.
Ask your doctor to prescribe the codeine since it worked and don't be afraid of opioids. At the low dose they are prescribed for RLS they don't make you high and you can always wean off them.
Gabapentin won't help much until you are off Sifrol and your symptoms have settled, usually in a few weeks. Start it 3 weeks before you are off Sifrol 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 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. 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin 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 . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not 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. 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.
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... It is the bible now for RLS and discusses opioids.
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.
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.
Most people with severe RLS will need to take meds for the rest of their lives. We are 'dependent' on them. Not 'addicted' to them. There are some who increase their brain iron via iron pills/infusions and manage to be drug free. However, most of us will need meds.Your doctor is wrong. Many of us get off Sifrol( Mirapex) and Ropinirole and never go back on them.
They make RLS so much worse. The other meds, like pregabalin, gabapentin and opioids do not.
I suggest you follow Sue Johnson's advice. Get bloods, increase serum ferritin, avoid trigger meds ( anti depressants, anti histamines). Reduce sifol slowly.
Shumbah is in Australia and is prescribed low dose Buprenorphine by her doctors. Several other Australian members are prescribed Buprenorphine.
Read the Mayo algorithm and ask your doctor to read it to update his knowledge.
Hopefully it will help get you off Sifrol. Your RLS will never settle until you're off Sifrol. It makes the disease worse.It is possible. Many of us have managed to get through the withdrawal.
I spent two years slowly weaning off Sifrol. I was taking 3.00mg each night. When I got down to 0.125mg per night my whole body was jerking and I did not sleep for days. I then introduced 5mgs of oxycodine each night, this helped me in the last stages of weaning off the Sifrol. I don't consider we are addicted to medications, we take prescribed medications to control our RLS. And to calm our bodies enough so we can sleep. Most people take sleep for granted, we cherish the few good hours we can get. The quality of our lives is diminished due to this awful, cruel condition.
I turned 70yrs in April this year. I have suffered every night with RLS since the age of 18yrs.
Take what ever you are given that gives you relief. I would never go back to Sifrol. It is an evil drug as far as I am concerned.
Worked well initially, then had to be increased overtime.
I have slowly lost 30klgs since weaning off the Sifrol.
It can take 6 months or more for our brains to adjust after finally weaning off Sifrol. So it can take time for any new medication to be fully effective in controlling our RLS. Patience is important.
I also take Temgesic sublingual medication (between 2-2.5+ tablets per night, depending on my symptoms or if I’ve consumed a trigger food)
I got off the dreaded sifrol in 2020 after 5 years on it. It was a terrible time that altered my views about suicide forever. Like you the binge eating/ weight gain also ended with it.
Good luck with your new doctor.
I’ve been worried about the future prospect of having to change doctors here on the Gold Coast (Australia) due to either my current doctor retiring or moving away… leaving me to the ‘wolves’ essentially.
After mentioning this my doctor suggested seeing another doctor in the practice. I’m have an appointment next month and wonder how I can plead my case in under 10 minutes. I’ll be armed with my printout of the Mayo Clinic guidelines etc plus pages and pages of diary notes and other material I’ve amassed these past few years. But will it be enough?… He’ll take a glance and wave it all away most likely.
In the end I can see myself having to just ask him to ring my actual doctor to get her to write me a script.
I don’t crave temgesic in any way. I don’t get a high. It is merely as you say a means to be able to lie in bed and sleep… a thing that most people on this planet take for granted. It’s not too much to ask. Is it?
But convincing doctors in Australia that you’re ‘dependent’ and not ‘addicted’ to a schedule 8 drug such as Temgesic is like scaling Mount Everest without oxygen.
Great to hear from you.I will contact you soon as I am really interested in learning more about how u r going on Buprenorphine and why u no longer take Targin.
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