My experience with pregabalin.

[TeddyRupert]

I have suffered with RLS for approximately 2 years. I'll cut a long story short. At the moment I take 150 mg of pregabalin before sleep. It seems to be working for me and I rarely go on the middle of the night pacing of the bedroom. During the day I do get episodes of RLS which seem easier to deal with. This condition is so strange and difficult to predict. My verdict on pregabalin is positive at the moment with no discernable side effects.

[SueJohnson]

That's great. So pleased for you. Although it is a shame you still have it during the day.

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, 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, magnesium glycinate, fennel, low oxalate diet, selenium, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

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.

[TeddyRupert in reply to SueJohnson]

Thanks Sue for advice. I've never had any help from my GP and even consultants. It is very difficult to get a face to face consultation with my GP. I have spoken to him only on the phone. How can this be right. I'm only on pregabalin because I was suffering from nerve pains. I have mentioned this on my profile page. Along with you and others I have learnt so much about RLS. Thanks

[Joolsg]

Insist that your GP arranges the full iron panel, morning fasting blood tests. NHS and NICE guidance on RLS do state this.Raising serum ferritin above 100ųg, preferably 200ųg/L can resolve the majority of RLS.

Are you taking any meds that triggered RLS 2 years ago? Or did you have operation on your spine or hips or legs?

It's unusual for RLS to suddenly start aged 72.

Common triggers are statins, beta blockers, anti depressants and sedating anti histamines.

[TeddyRupert]

Thanks Joolsg for advice. I'll relate some of my medical history. 10 years ago I was diagnosed with a melanoma. After 2 operations the melanoma was removed. Unfortunately a tumour developed in my leg and was successfully removed. After a biopsy rogue cells were found. My oncologist suggested immunotherapy to clear up any problem cells. The course lasted 1 year and was completed in August 2022. As part of the ongoing treatment I have 2 scans - CT and PET - every 6 months and so far I have the all clear. Sorry it's a long read. Shortly after my immunotherapy treatment ended I was diagnosed with a Baker's cyst. From then on everything went downhill. I was crippled and found it difficult to walk. In November 2022 I was referred to a rheumatologist. A large injection of steroid helped me walk better. But I was left with a painful left hand and told I had a condition whiched mimicked arthritis and was prescribed steroids. Later I was put on weekly dose of methotrexate which I still take. In this time I developed RLS. I've spoken to my oncologist about RLS and she seems to think the treatment I received has damaged my nervous system. No one seems to understand this condition. As for meds the only one I've taken constantly is simstatin soon to be changed to atoravastatin. Thanks for reading this message. It's good to know there are people out there who listen. Thank you

[SueJohnson in reply to TeddyRupert]

That's terrible! You have had a really rough time.

Unfortunately all statins can make RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

Since you take pregabalin you should be closely monitored as it can raise the bad LDL and lower the good HDL

[Joolsg in reply to TeddyRupert]

I'm sorry to hear of the health issues you've suffered. I agree with your oncologist. Damaged nerves can cause RLS.However, your RLS is controlled at night, but not in the day. That is unusual as RLS follows the dopamine cycle and dopamine is lowest between 7pm and 6am.

It's possible that the chemotherapy has caused peripheral neuropathy and that is what you now have.

Pregabalin works well for peripheral neuropathy, so discuss taking a daytime dose to cover the daytime symptoms.

You can add a small 25mg dose around 2 hours before the time you normally get daytime RLS.

[Nikos64]

Glad to hear it’s working for you. It didn’t provide much relief for me … it also caused me to gain lots of weight … so make sure you keep track of your weight regularly ! Weight gain and daytime sleepiness are common side effects of this drug.

[TeddyRupert]

Thank you Sue Johnson and Joolsg. Your replies were so helpful. I've been pleased with my experience with pregabalin so far and haven't had any weight gain problems. I do feel sleepy at times during the day but that could be age related. I'll take your advice and speak to my GP and take a small dose of pregabalin during the day. Anyway thanks for your advice. Much appreciated .

[Marilynn]

Hi Teddy. I was on Pregabalin for some time and to be honest it worked really well for me. I've suffered with RLS for many years and it's the only thing which ever worked for me. However I did find that I put on a considerable amount of weight and I couldn't cope with that so I came off them. That was the hard part. I found it took quite a while and a lot of determination to come off it but I'm completely off it now. But if you can cope with the side effects I found it was the only thing that really worked for me. Wishing you success if you decide to stay with it.

[TeddyRupert in reply to Marilynn]

Hi Marilyn thanks for reply. Sorry to hear about your negative experience with pregabalin. So far I've been lucky and haven't had weight gain problems. At the moment I take 100g per night. You have stopped taking pregabalin what do take instead ?

[Marilynn]

Hi Teddy. I don't take anything for the restless legs any more. I seemed to be ok after stopping Pregabalin for a whole but then I started a new antidepressant which I think is maybe my trigger for RLS and almost immediately it started up again. I also struggle with sleep which of course makes matters worse but now I take cocodamol which usually helps ...but not always unfortunately. I do try not to take it too often though as I know it can be addictive but I prefer it to pregabalin because although P worked for the legs I was always falling asleep at the most inappropriate times. A kind of devil and the deep blue sea kind of situation. Glad to hear that you're having no problems with it.