My OH often suffers from restless legs he has GPA vasculitis.
He has obtained some tablets from the US that are not available in the UK and I wondered if anyone had used them and is there any contra indication with MMF.
The tablets are called Restful legs produced by Hylabds Naturals.
thank you. He will not be taking the tablets until he is reassured by consultant but wondered if anyone had used them .
what do you mean by restless legs. I have GPA for over 10 yrs and i have just started suffering from severe night cramps in my legs and feet ?
Restless legs different from cramp
I get them and they are awful it’s like you can’t sleep or lie still your legs get jumpy
I was very interested to read this about cramps, so thanks for posting it! I have GPA (diagnosed 2012) and also had massive night cramps in my feet which was complete agony for up to 1-2 hours each episode leaving me in tears with pain- it used to blow in and out with no notice and after a few years (maybe 5) stopped completely.
I wonder if you have, or will also get chronic joint and muscle pains? In 2021 after about 5 years of no cramps at all, pain started in my lower back, then my shoulders then moved into my hips as well and then my hamstrings, it built over 8 months and the last 6 weeks I was completely disabled and couldn't dress myself, had to have toilet seat raisers on crutches the lot - super scary. I went to see my GPA Consultant assuming I had something else wrong with me but just to get a view as I was desperate and he confirmed it was a GPA flare. Steroids sorted me out and now I still have grumbling issues with joints and muscles which I control with very low dose steroids (5mg or 3mg once or twice a week). If I don't stamp it out with low dose steroids fast it gets really bad again and needs more like 10mg for a couple of weeks and a taper.
For what it's worth GPA first hit my airways and ears but appears to have moved on now and I haven't had airways issues for years. Bizarre!
Hi, I totally sympathise with your husband as I also get this and it is such a weird feeling. It will wake me up and keep me up at night, where I just have to keep pacing around until it subsides as I cannot even sit. I have been given Pregabalin to help these symptoms, but not sure if it does help, but wary of stopping in case symptoms get worse. I have heard, although not worked for me, that drinking tonic water can help, something to do with quinine in it, so might be worth a try.
I hope your husband finds a solution, best wishes 😊.
Hi, l have EGPA - 15yrs + now.. My consultant has prescribed Pregabalin for pain/discomfort, which also helps with restless legs that l get occasionally. I take one tablet with my mycophenolate in the evening, usually 2 hours before bed but not until any leg fidgeting subsides (neuropathy). If restless leg is persistent l try 2 paracetamol and/or another pregabalin and wait for them to take effect. It does disrupt my sleep regime. I just think my restless leg (usually the left one) is associated with neuropathy. My consultant has advised l can increase my one pregabalin tablet to 2 or perhaps more for any pain/discomfort but l choose not to as the can be addictive. Sorry for the lengthy explanation but each of us may react to tablets differently.
yes I have used them- bought some OTC the last time I was there. They do work well.
Were you on any medication at the time if you don’t mind me asking. He takes MMF
My partner suffers badly from restless legs often keeping him awake until the early hours of the morning. What with my night pain and his legs (and sometimes arms) suddenly jerking, we sleep in different rooms!
He has tried everything from the'natural remedy' range including the ingredients shown on this label (despite my efforts to point out that they don't have double blind trial data to back them up). He did think that the lycopenes (present in coloured fruit and vegetables) helped a bit but it seemed to wear off...the same with zinc... A hot water bottle worked (or was co-incidence) for several months!
The medications that are suggested by the conventional medical establishment all have such horrific side effects that he's given up on those too.
I wish someone would do some research into the condition and find out why people get it and what would stop it. It is very distressing to be kept awake by the sudden jerking of your limbs!
Hi, I have had restless arms and legs for years even before I was diagnosed with EGPA and I take an oral vitamin D spray usually a couple of thousand IU betteryou one from Amazon as it is starting, pace round the house a bit and it subsides.
I was diagnosed with EGPA two years ago, and at first I couldn’t sleep because my legs just wouldn’t stop moving. Once I started taking prednisalone they calmed right down, but I still got the occasional twitch until a few months ago. Since then the problem’s gone away. I hope you follow a similar path.
Thank you. He has had vasculitis for a number of years and the restless legs come and go tbh .
a renowned neurologist now retired said you could have both (restless legs and Erythromelalgia, secondary to MPA). I rely on maintenance Rituximab plus Amitriptylene at night to gain some sleep. The latter was shown by a world-wide meta analysis to come top for neuropathic pain. I remember that the indicator for restless legs was serum ferritin, not a wider measure of iron, as it shows the level of iron storage in the brain. Introvenous iron was said to help. There is a really good booklet by Chaudhuri in the Oxford Neurology Library ONL called Restless Leg Syndrome published by Oxford University Press. It also refers to leg cramps and Periodic Limb Movements PLM.
Good luck. It’s not easy
Thank you for your input, it’s annoying and we did wonder if someone in the group would come up with some suggestions which they have.
I have had restless legs for more than 40 years. I am 66, 8 years ago diagnosed with diabetes. I started with neuropathy in just my toes. Then it got worse as the pain, muscle cramps, and burning involved my entire legs. I assumed it was due to the diabetes. 2023 brought another autoimmune diagnosis - MPA vasculitis. After much research, I believe most of my symptoms are from MPA. As far as treatment I am taking 600MG of GABAPENTIN at 10 am and 9 pm. I would not want to live if I did not take Gabapentin. Just last week, at about 6 pm my legs hurt so bad I could not stand. I could not find any relief no matter what I tried. I was in a bit of a panic because I thought I would have to increase my dosage of Gabapentin and was unsure if my doctor would agree as it was just increased a few months ago. I suffered until 8:30 and decided to take my 9 pm Gabapentin a little early. It was then I realized why I was in so much pain. I had forgotten to take my 10 am Gabapentin.
I have found that extra potassium tablets and compression socks help.
Hi I have had restless legs syndrome for 40+ years this disease is a nightmare I have been taking a drug prescribed called ropinirole for many years which helps most of the time I also suffer with gpa pr3 with lung and kidney involvement plus other problems believe me restless legs are a really debilitating disease the lack of sleep is relentless but as I said the ropinirole does help I have seen doctors neurologists but they don't fully understand the cause of this disease I hope this helps
After Three years I am been taken off my medication for my illness Anca vasculitis.
Restless leg syndrome??
Uncomfortable heavy painful legs with WG and Stage 4/5 Kidney Failure. 
Joint and muscle pain after remission. 
