Hi Guys new here.

[Dee5164]

Hi guys I have had RSL for about 10 years and have been taking 0.25mg sifrol at night. I now have the same feeling in my left arm and it is getting worse, I have a lot of other medical issues as well and I am taking Mizart 40 mg for blood pressure , I was taking Amitriptyline 10 mgs as well for the nerve pain I have but it wasn't working so I stopped it my Dr didn't ask me why I stopped it. I only have half a left lung and the right has COPD. I'm getting extreme cramps all over my body , nausea , I'm lucky if I hit the 4hr mark for a nights sleep but that' a rarity. My GP is very pushy and never listens and doesn't like me suggesting things. So I'm asking if any the above symptoms could be because I have been on the sifrol for so long. Would really appreciate any advice . I am in Australia, so Dr's really don't like prescribing oxycodone or other opioids.

[SueJohnson]

You are suffering from augmentation. 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. Unfortunately that means you need to come off sifrol. To come off To come off sifrol, 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 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 sifrol 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 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 split the doses with 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. 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 and if you take calcium don't take it within 2 hours. 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. 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. 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... However since you have COPD gabapentin or pregabalin may not be right for you as you can have breathing problems. You will definitely need to discuss this with your doctor. In that case low dose opioids are generally what are recommended. If your doctor won't prescribe opioids you will need to change doctors. If needed show this article to your doctor atsjournals.org/doi/10.1513... although other articles indicate opioids can affect breathing although that seems to apply to the misuse of opioids. You can research this further by googling "opioids and COPD."

[SueJohnson]

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.

[Joolsg]

I agree with Sue. It's augmentation and you have to get off the Sifrol.Shumbah is in Australia and manages to get Buprenorphine. There are a few doctors in Australia who now realise how dangerous dopamine agonists are and they will prescribe low dose opioids.

[Jumpey]

Good luck with managing the augmentation. I empathise with the lung issues.I have lung disease too.Your doctor sounds very difficult. May be worth finding a more open GP.

[Eryl]

All your problems point to a poor diet. The consumption of processed foods is a big contributor to cardiovascular disease, these foods also cause systemic inflammation which is the main cause of RLS. inflammation is a big contributor to the restiction of the airways leadiong to copd, athsma and other respiratory problems.

[Dee5164 in reply to Eryl]

Hi I'm very mindful with my diet I have to be I have several health issues that make it a must. The copd was caused by exposure to chemicals when I was younger, I have had it since I was 21.

[Eryl in reply to Dee5164]

Being "mindful" doesn't explain anything. What aspect of your diet do you minimise or optimise?

[Marmav]

I am taking amitryptiline for restless leg syndrome, 5 mgs before bed. I haven't found the problems you are having, although some nights the tablets have no effect at all. I have debated asking my doctor to increase the dose but this might increase the tiredness during the day, so I haven't as yet.

[SueJohnson in reply to Marmav]

Have you had your ferritin checked?

[Marmav in reply to SueJohnson]

I've recently had blood tests with my doctor but they didn't say anything about a problem with my iron. I take an iron tablet with vitamin C every day.

[SueJohnson in reply to Marmav]

You need to ask for your ferritin number. It may not have even been tested as the normal iron test doesn't test for ferritin. Even if it was tested doctors will say it is normal but what is normal for others is not normal for those of us with RLS. And if you didn't stop taking your iron tablets or any multivitamins with iron in them 48 hours before the test or fast after midnight and have your test in the morning then your ferritin will be higher than it would be and is not representative of the number you want. So ask your doctor for the number. Also for your TSAT. Your TSAT needs to be between 20% and 45% and your ferritin over 100. Post it here and we can give you some advice.

[Dee5164 in reply to Marmav]

My Dr had doubled my dose and it still didn't help with sleeping or anything else for that matter and just made me feel terrible for the entire day, hence why I stopped taking it. There was no benefit from it.

[RestLessLeg]

Im sorry to hear of your suffering.

As suggested by others it may be time to find a new doctor. The one you’re seeing sounds like the typical, arrogant, ignorant doctor one finds in Australia.

I too live in Australia. Most doctors here seem to prescribe only dopamine agonists such as Siffrol and Sinemet. Most doctors Ive seen weren’t even prepared to prescribe lyrica (pregabalin) let alone opioids.

It’s a good thing you stopped the amytripyline as it can make RLS worse (it made mine worse)

You really could benefit from a low dose opioid if you could find a doctor who would prescribe one. You need to arm yourself with information to back up your argument. Have a copy of the latest Mayo Clinic guidelines on hand.

In the short term make sure any medications you are currently taking (other than siffrol) do not exacerbate RLS.

Watch what you eat. Many here (including myself) have discovered that things such as sugar (ie all sweets: chocolate, cakes, biscuits, ice cream etc) ,alcohol, and even things such as sauces and msg can contribute to worsening symptoms.

Towards the end when I was weaning off sifrol I was suffering nausea on even the smallest amount so it’s possible your nausea could be because of the siffrol.

I never suffered nausea on siffrol before when I was taking the maximum amount of .750mg (3 X .250mg) for 5 years or so. Towards the end of taking it I’d take like a quarter .250mg tablet of siffrol and later in the night would be hunched over the basin vomiting. I also had RLS in my arms as well as my legs which was horrible. As Sue and Jools have advised it would be in your best interests to get off the siffrol. Do not increase the dose as your doctor would most likely advise.

Again it sounds like a change of doctor might prevent a lot of unnecessary suffering for you. It took years after trying everything else including sifrol to finally convince a doctor I was seeing to prescribe temgesic at a very low dose. He then retired so I had a very frustrating few months going through a multitude of different doctors (and so called specialists) before I eventually found a kind doctor who was prepared to continue the Temgesic. I’d be lost without her. She accepted a copy the Mayo Clinic guidelines and asked how the temgesic was going instead of just flat out refusing like everyone else. After she consented to increasing the dose 8 months or so ago I now have a much better quality of life, compared to the 11 years of suffering I endured beforehand.

I hope you can find someone too who will help to ease your suffering.

[Dee5164]

Thank You for the advice I will take it all onboard.

[Retiredlady]

I live in Melbourne Australia also and suffer from rls 24/7 caused by long term use of sifrol.I am seeing a sleep specialist who willingly prescribed low dose opioids (codeine) and clonazepam to help me slowly wean off this awful drug.Unfortunately had no help from neurologist who prescribed extended release sifrol and suggested a psychiatrist!I of course never took that sifrol and stopped seeing him…..He had no empathy or understanding of how ongoing sleep deprivation can cause anxiety.

[Dee5164 in reply to Retiredlady]

Seems to the majority of Dr's here in Australia have no real understanding of what people go through, or just don't care. I was told to see a psychiatrist as well by my neurologist. I am currently weaning myself of the sifrol and it's not been easy. I hope you find some relief soon and a good doctor. I'm not looking for a new doctor at the moment, I have no faith in them .