I have had restless legs since early my teens. All through my life ( I am 72 ) doctors have basically said poor you and that was that. Five years ago I had a sleep apnea test which was fine but the consultant concluded that I had acute RLS (which I obviously already knew and had previously told him) and he put me on Mirapexin. And it worked very well.You can imagine how happy I felt. Symptom free. He started me on 0.088mg and that worked very well for about 6 to 8 weeks. As it became less effective my GP upped the dose to 2 x 0.088 mg and that worked well for another 6 weeks or so. This continued for almost a year with the dosage being increased each time the efficacy waned until I reached the maximum accepted dose for RLS, which is 0.54 mg (roughly 6 times the strength of the starting dose). Eventually this maximum dose stopped working so I weaned myself off them during which time the RLS was very very bad. (This was probably the augmentation that I have recently read about on this site).
Anyway, after a few months I asked to go back on the Mirapexin and the same process started again and while it did work pretty well the efficacy wore off on each step more quickly than the first time and I was at max dose again within about 8 months and facing the awful withdrawal period followed by abstinence before starting the cycle again.
I had started this phased withdrawal before seeing my consultant last May. I have COPD which is the main condition he sees me for - but he was also the one who prescribed the Mirapexin for RLS. I told him about the cycle I was again facing with Mirapexin and asked had any alternative therapies been found. He said no. Nothing.
Shortly afterwards I found this forum and read about Gabapentin and followed the link to the Mayo Clinic’s research on it and armed with that knowledge I went to my GP and asked him about it. He said yes, we could try Gabapentin and he started me on 100mg. He said it was okay to start the Gabapentin while weaning off Mirapexin. I had nearly weaned myself off Mirapexin at that stage (I’m now down to 0.088mg and should be fully off it within another week). Which will leave me on 100mg of Gabapentin - which is not working AT ALL ☹️.
Reading the posts on here it seems to me that 100mg of Gabapentin is a very very low dose. My GP said that we could review it in a month and perhaps increase it to 200mg. Again, this seems very very low. If anyone could give me advice on the best way to handle this I would be very very grateful. Best of luck to all my fellow sufferers.
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Finn2
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Show the Mayo guidelines to your doctors. Average gabapentin dose for RLS is 1200-1800mg. Read SueJohnson's replies to recent posts and she sets out how to increase the gabapentin and the iron tests you need.You may need an opioid to help deal with the withdrawals from Pramipexole.
Don't try another DA like Ropinirole or the Neupro patch because your RLS symptoms will just get worse.
Hi Jools your advice on here is amazing and I am grateful for that. I knownI have jumped in on another persons post, sorry Finn2 but I wondered if you could advise me on when to take my gabapentin. My RLS is so bad that at the moment I’m averaging 7 hours sleep per week! I have been trying to take my meds at different times of the day to see if it makes any difference. My problem is because I don’t sleep it’s difficult to decide on when to take my gabapentin. I’m currently on 900mg per day and take it split between the day ie 8am 8pm and midnight. Also I take magnesium supplements which I already know that it needs to be taken at least 3 hours apart. Will taking my gabapentin help if i take it differently? I also must point out that I am taking gabapentin for a nerve damage issue which has currently subsided but am still taking the gabapentin anyway as since finding this forum I found that out. My gp have never prescribed anything for my RLS. I took an extra gabapentin at 5am this morning because it was so bad and I had done 48 with no sleep and I was desperate so am I doing it all wrong? Sorry for the long post.
If you're taking gabapentin for RLS, it's best to take only in the evening as that's when RLS is at its worst.900mg is a very low dose. The average dose for RLS is 1200-1800mg.
Anything above 600mg in one go is poorly absorbed so it's best to take 600mg 1 or 2 hours before sleep and 600mg 4 hours before sleep.
If your RLS is that bad you should get your bloods checked. Ensure serum ferritin is above 100, preferably 200.
Also check all other meds as sedating anti histamines, anti depressants, statins, beta blockers & PPI gastric meds all trigger/worsen RLS.
If upping iron, avoiding trigger meds and increasing gabapentin doesn't help you may need to see your doctor to discuss low dose opioids.
Thankyou Jools I am very grateful for your help I will start taking my meds in the evening as you have pointed out. I shall let you know how I get on thanks again x
Hi just an update it’s only been 2 days and taking my 600 gabapentin at night is already making a difference. I have had 5 plus hours sleep each with very mild symptoms as opposed to 1 hour sleep or none. It’s early days i know but 2 days with sleep is an absolute godsend. Now I need to tackle the menopause and I’ll be on top form! Thanks so much for your help x
It really is terrible that UK doctors have no knowledge of RLS. Like you, I originally joined this forum when augmenting on Ropinirole 6 years ago.Sadly, nothing has changed in that time. Doctors still know nothing & the Royal College of GPs refuse to teach it.
It’s so bad because it really impacts peoples lives and doctors need to understand how difficult living with this condition really is. Let’s hope this will change
Here is what Joolsg was referring to (I'll save you trying to find my previous replies). First off, have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. 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 your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If as it interferes with the absorption of iron. 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. It's great that you have been weaning off Mirapexin and are down to such a low dose. On the gabapentin, beginning dose is usually 300 mg gabapentin or 100 mg if you are over 65 which is why your doctor started you on 100 mg, although I was 80 when I started on it at 300 mg. It won't be fully effective until you are off Mirapexin for several weeks. After that the usual recommendation is to 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." as Joolsg mentioned. If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Print out the section on the Mayo Clinic article that says gabapentin should be increased every couple of days and show it to your doctor.
My heart goes out to you. I can testify to the suffering you have endured, having had RLS since my first pregnancy in 1979. I too have gotten myself off mirapex..3 times…never again! Gabapentin worked at 900 mg for awhile…it really helps some folks, so i would not counsel you on pros or cons. But it is another hell to get off of, so my counsel is to take it if you plan to stay on it. It sounds like you need a dr who is an expert on RLS…your dr is dabbling and not addressing your extreme circumstance. Here are my questions: what medications are you on for other health conditions? Many Rx’s cause RLS, eg antihistamines and PPI’s. Work to get off any meds that are making this worse.. what do you eat? This aspect has been completely transformational for me. I have cut out oxalates…this cannot be done overnight. There is an expert online who can guide you, with her inexpensive and free material: sally k norton…she has a website and she is the most reliable source for information on oxalates, which can be a neurotoxin for many people. She is also on instagram and i have learned so much from her. I am now off all meds for RLS after 16 years of he**. I am 70. I am also off my antihistamines and working on the PPI…Oxalates make all these conditions worse. Sadly, most health information today encourages us to eat more and more oxalates. My personal opinion is that one has to find their own answers. Doctors are not educated in the finer aspects of foods and nutrition. And even alternative medicine can give us way too many conflicting answers. I had to find the answers that worked for me…
A person on this site, can’t think of the name just now…helped me a great deal. Suggested cutting out gelatin products..eg that yummy gelled broth leftover from roasting meat…oh that was a huge source of RLS for me! Also i cut out cooking with non-stick pans. And gluten is another huge problem.
Potatoes too. Look at oxalates. Look at what poisons are in your system, eg fluoride, health and beauty products. And give up all alcohol…another huge factor.
Yes getting off gabapentin can be hell, which is why one should always reduce it very slowly. If one does this, than there will be no withdrawal effects. So if you mention this to others, I hope you will mention this.
Thanks for the reminder sue. Each of us is different. In my case i was on 900mg per day and took 5 months to get off and it was still he**. But that’s why a forum like this is valuable. One hears the variety of experiences that the average website of side effects does not tell us.
Which just goes to show how each of us is different and can react differently to medicines. A great example is coffee. For many it makes RLS worse and for many it helps and makes RLS better.
Dopamine agonists are awful drugs IMHO. Gabapentin even at 1800mg barely touches my RLS. My doctor started me on Tramadol after he took me off pramipexole. It’s an opioid unfortunately, but it has been the most effective medication for me.
Be forewarned : it is difficult to get off once you’re on it. So please make sure you try everything before having to resort to that !
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