Just thought I would say Hi

I'm new to the site and its good to share with people who know exactly what I'm talking about. When I first had RLS a hot bath seemed to help but eventually that stopped working and I was prescribed Pramipexole by my GP without any discussion I might add. I found that 3 tabs worked best and I have to take them at about 8 ish any later and I will be up until 1 or 2 in the morning. I forgot to take them about 3 months ago and got no sleep at all that night. Recently the pharmacy has given me two different makes and I have found they work differently not sure why. I have been taking it for quite a long time now and it does worry me that they will stop working. I also find during the day RLS can be a problem if I am forced to sit still in a meeting I just figet all the time, stretching and bending my legs. Thanks for all your comments it just helps knowing other people have it too.

13 Replies

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  • Hello Jigglylegs.

    Yes, if you forget to take the meds.your RLS will let you know, thats happened to many of us.

    Not sure about the difference in the pramipexole cause i have only tried one make. Someone else might have found them different in the way they work.

    If and when it stops working, there are other choices of meds you can use..

  • hi, i have heard a few people comment that generic brands dont work the same, but luckily ive never had to find it out on a personal level.

    sorry you have had to join us though, as its a horrid illness, but good luck with your treatments

    jean

  • HI Jigglylegs

    I have never heard this before, do you mind sharing what names these went by?

    Kindest

    Bob M

  • The Pramipexole that I have been having for a long time and usually take about 8 in the evening are made by Teva Pharma B.V. The ones that I have had more recently are slightly bigger in size and made by Glenmark Generics (Europe) Ltd and I have to take these earlier in the evening to give them time to work although they are the same dose.

  • thank you

  • Although I'm probably not suffering as badly as some people on this site, I've found (accidentally) that soluble aspirin helps me in the daytime. I take Aspro clear once a day, usually around midday. My g.p. approves and prescribes one 300 mg enteric coated aspirin daily. But I find the soluble aspirin is best at relieving daytime symptoms.

  • Thank you for that information I will give soluable aspirin a go in the day.

  • jigglylegs: have you had your ferritin level checked. This is a blood test that isn't normally done as routine, it usually has to be specifically requested. Some docs will reckon that a level of 20 is normal but my understanding is that for us folks with rls we should have a level of around 100 before even starting requip or pramipexole. These meds work best if you are way ahead of your symptoms, they don't work so well if symptoms have already started. Also, be sure that you aren't aggravating your symptoms with any other stuff that you are taking, over the counter stuff like benylin or anti-histamins, alcohol etc.

  • I have been taking anti-histamines as I have hayfever I did not realise they affected my rls. It has been worse come to think of it since I started taking citirazine. I have found out by accident that I have to take my meds early in the evening as when I was originally prescribed them the GP told me half an hour before bed was the right time. If I take them later than 9 I will be awake until 1 in the morning before I can sleep. I have been so tired sometimes unable to stand up properly but not able to keep still. I end up leaning on a wall or the end of the bed flexing my legs.

  • try the support stockings. its worth a try.

  • Hi, I can only take one brand of Pramixole which is the Mirapexin Brand anything else and it really doesn't work. I don't have the box so I cant say what the makers name is.

    Margaret/Cardiff

  • Jigglylegs thanks for you blog your description sounds so familiar. I have days very similar. If I forget my medication I'm in for a really bad night. I've been on pramipexole for some time now. I've had flair ups during the day also. Compression seems to help also. If I wear compression stockings during the day I've been getting even more relief. The past six months I have one or two days a month that have been totally sleepless. One or two days are not to bad considering how life was!! I was referred to a new doctor about eight months ago by my GP. Every thing has been getting much better.

  • Thanks for all your support people. I will try the support/ compression idea. I have been awake early this morning due to heat I think but also had to get up legs started so couldn't just lie still.

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