Re: Restless legs (Kate)

[Guest guest]

Hi Kate-

I am not sure if we have met before, my name is Keri and I have had the dragon

for gees going on 6 years now the coming April. I am in and out, reading

everyones posts and sometimes putting in my too cents. But I have been a member

of this support group since I was diagnosed.

I wanted to respond to your restless legs, I have them every once in awhile. I

find that I get them when I sit in a chair for long periods of time and even

when I am in bed and I am not feeling well, I notice that I can't stop moving my

legs around. Anyway, my doc seems to think mine is muscle related so I have

muscle relaxers. Which I don't like to take it I don't have too, so sometimes I

just try walking around and stretching. I don't know if this will work for you,

becuz everyone is different of course but... I also take a REALLY warm bath and

relax and it seems to help.

The Enbrel question, I was Enbrel for 2 years. Wasn't for me obviously, I

should of changed meds after giving it a year. I never really felt relief from

the Enbrel. Which isn't to say that it might not work for you. You'll never

know until you try. I too did the splitting up the dosages, didn't work. But

don't give up, seriuosly, everyone is different and you might respond to

splitting up the dosages.

After the Enbrel, they put me on Remicade, which I have to say is my best friend

right now. It is great. I know there are alot of down sides with going the

Remicade route and the inconvenience of having to go into the dr. office instead

of self injecting at home, but you know what the way I have been feeling, almost

normal,if there is such a thing, I will deal with those issues when they show

their ugly heads. Becuz right now I have felt the most relief then I have in

the past 5 1/2 years. It is really doing wonders for me.

Good luck on the Enbrel. Be positive and I hope that you find some relief with

your restless legs.

Love and support,

Keri in CA

Restless legs

Hi all,

Sorry if this topic has come up before recently but I just wanted to

pick your brains about restless legs. It's causing me untold amounts

of distress at the moment, probably 3-4 nights a week. I can do

nothing but keep moving around and, with bad joints anyway, you can

imagine the consequences of a midnight impromptu aerobics session the

next day!I've had it very mildly for a long time but it's far worse

now and it spreads to my arms too. I get some relief with tramadol

and oramorph (both morphine based) but I'm very wary of getting

reliant on opiates just to get some sleep.I'll mention it to the doc

at my next appointment but I just wondered whether anyone had any

tips in the meantime.

As for other things, I'm doing ok with the enbrel. I'm getting 3

really good days out of it which is much better than 7 awful ones

that's for sure. The doc has got me splitting the 50mg into 2x 25mg

now per week to see if that allows me to feel the benefit for longer.

If not, we're loking into having 100mg (50mgx2/week) but we have to

get round the UK licensing laws for enbrel first on that one.

Hope you've all had a reasonable weekend. Take care everyone

Kate (UK)