RLS for 30 years

[Magna7789]

Hi Judy here from Australia. I have had RLS for 30 years or more. I think my mother did too but it wasn’t diagnosed. My daughter has had it since being pregnant with her first child.

After much research and realising what I had I saw a sleep doctor about 10 years ago who commenced me on Sifrol which was the first line of treatment at that time. I was so grateful to him as I was then able to have a decent sleep without being awake most of the night.

Over time I gradually increased the dose to 0.75mg - 3 tabs but unfortunately started to develop augmentation.

I tried to reduce the dose but started to have quite bad RLS and became sleep deprived.

Anyway I just wanted to give everyone hope as I now manage my RLS with Sifrol 0.25mg and Gabapentin 300mg taken together at 8pm every night and don’t appear to have any side effects including augmentation from the sifrol.

Just as an addit I cannot have wine or anything containing sugar in the afternoon/evening because if I do I have the worst ever sleep to the point that it feels like I haven’t had any medication at all.

I hope this may be helpful for some

[Madlegs1]

Thanks, Judy, for sharing your experience.

I hope it keeps good for you, although still being on Sifrol may be a concern in the future.

As you know, any of the DAs may cause augmentation, so don't let anyone put you on them.

All the best.

PS. The fact that your daughter got RLS while pregnant, points to iron deficiency being a factor.

Both of you should get your serum ferritin checked. The number should be above 200. If it isn't, then ask your doctor for ways to raise the iron. Ferrous bysglicinate (gentle iron) or in extreme - infusion. Just read up any of Sue Johnson's replies on this site.

[Magna7789 in reply to Madlegs1]

Thanks Madlegs1. I’ve had my Ferritin checked over the years and levels have always been close to upper limits so I’m a bit puzzled there. However my daughter is on iron tablets and she seldom has restless legs now.

[Joolsg]

I'm glad to hear you've delayed the augmentation by reducing to 0.25 of Sifrol. But as Madlegs says, keep an eye out. These drugs over stimulate the D1 receptors and even a small amount can set off augmentation again.

Enjoy this respite and I hope it lasts years rather than months.

If it flares up, at least you are now on a small dose and it will be easier to reduce.

Here's to a long period of no RLS!

[Magna7789 in reply to Joolsg]

Thanks Joolsg. I’m very happy that I’m sleeping well now. As we all know RLS can be so unbearable and I’ve spent many nights when I’ve been just so distressed and very exhausted by morning.

I’m hoping that my relatively small doses of Sifrol and Gabapentin might encourage others to try these.

[SueJohnson]

Have you had your ferritin checked? 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 multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. 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. Also Improving your ferritin is one of the ways to help avoid augmentation which it is still possible even on .25 mg of sifrol.

[Magna7789 in reply to SueJohnson]

Thanks Sue. My Ferritin level in the past has been quite high but I haven’t had it checked in a few years so will when I next see GP. I am very lucky to have a supportive GP who is happy to support me with what I suggest for management of RLS. I found the Mayo Clinic’s website has been helpful.