Hi just to update

[Pookie100]

Hi Just to let folk know I eventually got the call last week to go down to London for an iron infusion after previous horrendous week with legs My consultant got me an emergency NHS bed in the National hospital of Neurology and neuro surgery in Queens Square as my iron was very low and I was suffering so much.

Was in from Tuesday to Thursday home now. The Rotigotine patches and Pregabalin consultant put me on in April just weren’t working and sadly I had to go back on Pramipexol which I’d worked so hard to come off since last August.

I’m now on 3 tablets of Pramipexol instead of the 5 I’d taken for years prior to last August.

I still can’t believe I was in hospital in sweltering heat last week lying about for 3 days and I didn’t get RLS while there? Normally heat and immobility would cause this and I only slept 2 hours each night due to heat and ward noise.

I’m going to check out alternatives with my GP to Statin s I take, I’ve seen some recommended here today, I’ve cut out alcohol and caffeine and reintroduced more meat and greens into my diet to help the iron and take iron tablet at night with vitimin c.

I worry I’m nearly back where I started last August on a drug we know causes augmentation, but hopefully with the break I had from it will stay controlled. . I laughed when I read someone feels they know more bout RLS than their GP cause that’s how I feel sometimes.

At lease I have a sympathetic Neurologist who got me the iron infusion within couple weeks, fingers crossed along with your kind tips I can keep it at bay.

When I hear people talking about feeling life’s not worth living I really feel for them the torment of it along with the sleep deprivation are awful it doesn’t help most people have no real idea what a dreadful disease this is, I not sure even friends really understand. Thank you again for contacting me when I reached out in the middle of a crisis it really helped to know you understand.

Sandy

[Jumpey]

Great about the infusion.I pray it works for you.I would definitely off the DA. And maybe ask for an opioid ? Good luck.

[Joolsg]

Hi Sandy. It's great you had the infusion but why were you in for 2 days? My infusion took 30 mins . Did they do other investigations?

I'm so sorry you've gone back on Pramipexole. Sadly, the augmentation WILL happen again. Pramipexole causes the D1 dopamine receptors to become over excited and it won't settle until you get off all dopaminergic drugs.

That was probably why the rotigitone patch didn't work. The D1 receptors were screaming constantly!.

I suggest you slowly reduce Pramipexole by half a 0.088 pill every 2 weeks while increasing pregabalin .

Pregabalin on its own will probably cover your RLS symptoms, but not until about 3 weeks after you've stopped all dopaminergic drugs. Especially now you've had the iron infusion.

I am sorry to put a dampener on things but your dopamine receptors will never settle and repair until you're off Pramipexole.

Opioids can help the withdrawal symptoms - codeine, tramadol or oxycodone. Cannabis is also useful.