Im starting support group gold coast australia

[jan_ET]

Hello all - I cant sit back and take this horrible condition anymore without taking action- I know three people near me at least and need to start a support group for this insidious problem - If you live on or near Gold Coast Australia please reply to my post - I am doing this because this forum has saved my life and sanity just interacting with people the same as me has given me hope and an overwhelming desire to do what I can to help and support others - wish me luck please and thank you to all the caring and courageous people who share on this forum 😍😢

[jan_ET]

oh thank goodness theres someone near me - not sure where to start - hi B - have you been through a lot with RLS Im in Labrador

[Leelee49 in reply to jan_ET]

Sorry, read that last bit as, I’m a Labrador haha was going to say, what a clever dog you are 😂

[jan_ET in reply to Leelee49]

oh very funny ha ha ha actually i wouldnt mind being a labrador dont think dogs get Rls do they im in agony at the moment will have to get up and walk bye for niw

[Joolsg]

Hi Jan,

Have you stopped the amitriptyline and started reducing the Sifrol yet?

I see from your previous posts that your RLS is bad but that will be made worse by the amitriptyline. Trazodone doesn't make RLS worse.

If you still have RLS all over after stopping the amitiptyline, you might be suffering Augmentation from the Sifrol.

Phogan is based on the Gold coast of Oz- look up posts and maybe send message.

[jan_ET in reply to Joolsg]

oh thanks no I havent changed snything uet i am new to this site and mu docis quite afraid of my changing meds but im having iron infusion on saturday and will explain augmentation to her and start a plan going - i think the anofranil or placil is worse than the amitryptanol for me but ive had the worst werk ever this week its been mirder so change has to happen as i cant take this snymore thanks for your message 😋

[kelirock in reply to Joolsg]

I have suffered from RSL for decades. I was diagnosed by a neurologist with bilateral RSL and was commenced on Sifrol. Initial dose of Sifrol was 1mg per day however, it wasn't long before i started experiencing breakthrough symptoms so my GP increased the dose by .25mg. I have been on this medication now for about 2 years and have gained 15kg. I recently went to a new GP who has commenced me on the very old fashioned treatment of Quinine. I had to cease Sifrol for a week which was absolute murder as the RSL symptoms were 20 times as bad as they had been before commencing Sifrol. I have started taking the Quinine and so far the symptoms have dampened down considerably and hopefully in another week will be totally under control. The new GP advised me he prescribes Quinine for all his patients with RSL and has found it almost 100% successful. Like any other drug it has it's side effects but to have the relief from RSL is worth it.

[jan_ET in reply to kelirock]

how much quinine do you take

[kelirock in reply to jan_ET]

I take a half Quinine (50mg) morning and night which seems to be working reasonably well so far but I am still experiencing break through symptoms. I'll keep the dose like this until I see my GP again in 4 days. He prescribed Quinine 100mg at night.

[jan_ET in reply to kelirock]

thanks ill fly that by my doc tomorrow

[jan_ET in reply to Joolsg]

Hi Joolsg - i have had the worst week ever with my legs - my doctor agrees that I have to stop the sifrol but today i had my first IV iron infusion and another one to have later so My doctor wants to wait a week before we start changes but one step at a time but they will happen for sure - I really cannot thank the people on this forum enough - you have saved my life as i now know what i am dealing with and my doctor and I realise the amitryptanol needs to go as well - a big job ahead but a godsend now I am on the right track thanks to my fellow (I wont say sufferers but rather ) kinfolk as you all know what this journey is like. I also contacted Phogan who has been in touch - thanks again for that as well. God bless and warm regards - Jan

[Joolsg in reply to jan_ET]

Glad to hear you’re in touch with people not too far away. I really hope you start to feel the benefit of the iron infusion soon. Your doctor seems helpful and supportive which is such a bonus as he will help you through the Sifrol/ amitriptyline withdrawal.

There are so many on here who have experienced withdrawal that you will be able to ask for help & support.

Take care,

Jools

[Joolsg]

Quinine doesn’t work for RLS so I’m really surprised it’s helping you. However, if you don’t have any more RLS, then brilliant.

[jan_ET]

hello bodziu would you be interested im helping me get a group started on gold coast I find face to face interaction best - please let me know - kind regards Jan

[nathanwilde]

Good luck Jan!

PS, I'm from the UK - but if you ever feel like sponsoring someone to come and move over to the Gold Coast, then I'm your guy! Beautiful.

[jan_ET in reply to nathanwilde]

oh ha ha nice of you to offer but if i had a spare dolla or two i would sponsor myself to england and visit ireland and scotland as my ancesters came from there i sure dont fit in the sunshine and aussie culture - nice offer though😋

[jan_ET]

hello well my group has only one member at present - me!!! im quite overwhelmed with trying to cope with the physical issues of RLS - one good night and 6 bad -in one week - really battling but trying to be positive - how are you doing up the road so to speak?

[ucdailoi-no-1 in reply to jan_ET]

Just read your post about the RLS group for the Gold Coast. I live in Robina.

Are you still operating the group and what has been most successful for you in stopping the RLS?

[Jules1953]

Two nights ago I commenced Buprenorphine 200 micrograms

(As hydrochloride)

In Western Australia it is sold under the label Temgesic Sublingual Tablets.

It is a controlled Drug here in Western Australia so possession without Authority is illegal.

My Doctor went through the appropriate channels to get me the necessary approval. I have had RLS for 49 years and all other medications have been exhausted.

The tablets are dissolved under the tongue. They come in very small doses and I took 3 tablets over a 1.5 hour period after going to bed last night.

So that is less than 1mg of the Buprenorphine.

I immediately stopped all my other RLS medication last night and commenced the Buprenorphine.

I was taking .....

600mg Gabapentin

5mg Endone (oxycodone)

0.250mg Sifrol (pramipexole)

It took me a while to get to sleep but once asleep I slept through to 6.00am

I then stayed in bed till 11.00am sleeping on and off with no RLS symptoms and no jerking.

I will keep you up to date with my progress.