Getting Worse

[CathyJoH]

I've had RLS for about 12 years taking ropinrole every night .5 mg. I refuse to increase. My RLS is getting worse and I'm starting to lose more sleep. My ferritin levels were taken and its 42.3. My doctor says its normal and doesn't think I should be taking anything to increase that to 100. What is the right thing to do here?

[SueJohnson]

It sounds like 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 have to come off the ropinirole which is no fun. 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. (Pregabalin is more expensive than gabapentin in the US.) 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." 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...

[CathyJoH in reply to SueJohnson]

Do I need to go completely off ropinrole before starting another drug?

[SueJohnson in reply to CathyJoH]

No, although normally one would start gabapentin or pregabalin 3 weeks before you are off ropinirole, you could start it now especially since only being on .5 mg ropinirole you don't have far to go. I wouldn't increase it for 3 weeks though since it takes that long to be effective.

[SueJohnson]

Your doctor is wrong about your ferritin level. What is normal for others is not normal for RLS. And increasing your ferritin may help with coming off ropinirole. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Take two tablets of 325 mg of ferrous sulfate or two tablets of 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every day at the same time so it is at least 24 hours apart, 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. Ferrous sulfate is cheaper in the US and for most people does not cause constipation but iron bisglycinate is much less likely to. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take you iron at night. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. If you take thyroid medicine don't take it within 4 hours. If you can get an iron infusion that will more quickly bring your ferritin up. 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.

[SueJohnson]

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.

[HipHop1972]

Hi Cathy-JoH. I’m so sorry you are suffering so badly from RLS and can fully understand what you’re going through as I’m suffering similar effects from being prescribed Ropinirole and was taking 6mg / day. As symptoms were increasing drastically it was suggested that I should start reducing the dose by 0.25mg / day waiting 2 to 3 weeks before the next reduction when symptoms have had time to settle down. What you are experiencing is a condition called Augmentation where the Medication rather than easing your condition is in fact making it worse. I started my Ropinirole reduction on 23 October 2022 and am now down to 1.75mg / day from the original 6mg /day. It’s not an easy journey but I can assure you it’s worth it, or will be when we have rid our bodies of Ropinirole.

I would suggest that you have a talk with your Doctor and find a Neurologist who knows something about RLS so that a program can be put together to help you through this process. There are alternatives that can be used to help with the withdrawal but I’m not medically knowledgeable so don’t want to give advice on that score. So far I’m not supplementing my withdrawal with anything other than Codeine twice a day to help suppression of the most severe symptoms until I can take my next daily dose of Ropinirole. I’m presently awaiting an appointment with a Neurologist but the way things are with the NHS in England at the moment I’m not holding my breath so may finally have to go and see one privately.

In the meantime take care and I hope you get some support and rest-bite.

[CathyJoH in reply to HipHop1972]

Thank you! I'm sorry you are going through this as well. I don't believe my GP is knowledgeable enough about RLS but she's a wonderful doctor.

[SleepKicker in reply to HipHop1972]

I agree with this advice. You can try 100 different things and find that some will help for awhile and many will not. I think trying to identify the source and possible triggers can help to eliminate the need to try everything. It can be a long road but it doesn't have to be. It does seem - from reading many posts on this site - that this condition is dramatically different for everyone. Be gentle with yourself and make any changes you can in your lifestyle to accommodate to the RLS as you figure this out.

[Graham3196]

1 Get a new doctor. At the very least you need a doctor who is knowledgeable about RLS. You should aim at a doctor who is willing to cooperate with your reasonable requirements. You are entitled to know if your doctor is familiar with RLS and with the Mayo Clinic updated algorithm. If you can get an appointment with a prospective doctor at low cost then you can interview them and ask in person. If its going to cost you time or money then ring and ask their representative on the phone about the doctors experience with RLS and familiarity with the Mayo clinic work. You don't want to waste 6 months finding out how ignorant they are.

You can immediately start on a diet the might help. I have no idea if the diet will help if you are augmenting but it wont do any harm to start now. I can send details of my diet if you like. By sticking to this diet I get relief from RLS symptoms for periods of weeks, I hope it will do the same for you. You probably need a dieticians advice to ensure that you get enough good food to be healthy.

A guide to the diet is the Monash University FODMAP elimination diet with a few extra exclusions. I avoid caffeine, lactose, alcohol, garlic, onion and gluten. Start a food diary now and enter every morsel you eat.

If you see an advantage in avoiding the usual drugs then the diet might work for you.

Iron infusion. The quickest way to raise your ferritin is an iron infusion. Some American doctors who are widely respected report that a few patients need ferritin to be over 300 before they get relief from the symptoms. There are many RLS patients who have ferritin concentration higher than this but who still have RLS but its commonly reported that about 50% of patients get significant relief once their ferritin is higher than 100. If it works its terrific and if it doesn't work you've lost nothing.

[CathyJoH in reply to Graham3196]

Thank you - why do doctors feel the high iron concentration can cause other medical problems?

[Graham3196 in reply to CathyJoH]

How many doctors have told you about other medical problems? If you are suffering from a few fairly rare conditions then I understand that there might be problems. All doctors I spoke to considered 500 to be a conservative upper limit. Many people naturally exceed a long term level of 500 with no ill effects.

When I was trying to get an infusion I asked each doctor who refused to treat me specifically what the danger was. The replies were along the lines that the infusion broke the skin and therefore infection was a possibility. Or more vaguely "any procedure has risks" I though this was ridiculous when a few years later our health experts were trying to inject Billions of people against Covid-19

Ask your doctor just what diseases he was referring to where the threat was greater than the reality of living with RLS and the miserable drugs that the alternative can offer.

Incidentally I have gone from 2 hours sleep per night, 7 nights per week to short bursts where I lose perhaps 2 hours sleep a few nights per week and then return to my new normal of zero RLS for a few weeks with no drugs. I practice a diet that works well.

[DicCarlson]

Oh me oh my - get a new doctor! Years ago now - I had severe RLS - 24/7. I thought it was Parkinson's - absolutely no sleep, maybe 2 hours a night, just had to get up and walk - exhausted! My Ferritin was 49 - docs said OK, nothing to see here! Thankfully I found this forum and other resources at Johns Hopkins University Neurology website. I started on Ferrous Bisglycinate Chelate - severe RLS was gone in 3 months!

[CathyJoH in reply to DicCarlson]

Thank you - how much iron do you take a day?

[DicCarlson in reply to CathyJoH]

Currently - I take none! My RLS was back in 2016/2017/2018. The severe RLS was assuaged with the iron supplements - ferrous bisglycinate (17mg/day, then every other day, then 2X weekly). My Ferritin lately is in the 100 range. I still have sleep issues but rarely any RLS or PLMD.

[ChrisColumbus]

I don't know whether you're in the UK or not as your profile is incomplete.. If you are, very few doctors and even few neurologists here are knowledgeable and up to date on RLS. If you have a doctor who is in other ways wonderful, as you say, I'm not sure that I'd drop them in the possibly vain attempt to find an RLS knowledgeable one.

Instead, share with them the information that SueJohnson has posted: if they are good they'll learn from and act on her good advice.

[ChrisColumbus]

On the subject of ferritin levels, there's some variation in 'normal' estimates: the most common top 'normal' figure quoted is 300 µg/L, but some such as the Cleveland Clinic give higher top figures for men and lower ones for women.

Some people naturally have ferritin levels above 500 µg/L without problems, and indeed according to my local hospital levels temporarily up to 1000 µg/L may not be a problem as long as the reason (e.g. a transfusion) is known.

Higher than normal levels which continue to rise without explanation, and levels over 1000 µg/L, are certainly a cause for concern.

[Nightwalker999]

I'm 82 RLS sufferer from 2016. During 1992 I was prescribed Tramadol and Amitriptyline for FMA.

It was stopped by my GP in 2017. the day after I experienced RLS and this has continued since.

I waited 2 years before approaching my GP. He Px Ropinerol which appeared to be miraculous at first but needed to increase steadily. After 2 years I decided to stop taking it after researched the problems that can occur.

It took me 18 months to get off 2 mg Ropinerol in the hope my legs would be relieved. Since stopping it 3 months ago the RLS has increased and I'm in the worst state. These meds have damaged my brain irreversibly.All meds. Gabapentin & Pregapentin have been tried with adverse effects.It's been 2 years plus since I've rested or slept for more than 2 hrs, Tramadol I obtained, not from my GP, helped but no effect now

I've recently had a blood infusion, 4 weeks ago and it seems no help so far.

I'm due for a neurologist appointment soon and I feel at my wits end. Would he/she suggest anything different? Perhaps he will be able to Px Bupromorphine. I know from here that it has improved their lives so many others

I've read online American chiropractic practitioners do surgery for leg nerves relief with success.

Any ideas wonderful fellow sufferers, much appreciated.

Bless you all. X