RLS the saga continues

[careerSquirrel]

Hi fellow survivors

As suspected, my GP refused to refer me for I/V iron suggesting that I persevere with the oral supplements for another few months.

He said it would be nigh on impossible to get an infusion on the NHS but was willing to refer me to a private doctor (I think someone mentioned a doctor in Cardiff)

Waiting lists for neurology in UK is around 12 months but I honestly think you guys know better.

he has agreed to prescribing Pregabalin but suggested I only take 25mg at night which could be reviewed after a month.

I have sent him the mayo algorithm and all the supporting documentation from the RLS uk website but this is where I am.

As always, I am looking to my RLS community to illuminate this for me and guide me with your knowledge and advice.

side effects of Pregabalin????

Really worried about weight gain as also have fibromyalgia and am menopausal so no more weight gain please.

He seems to think these drugs are very dangerous but I’m ready to try anything

[Kaarina Administrator]

In June 2023, username joolsg recommended Dr Jose Thomas (NHS/Private) who treats with iron infusions first. He does phone consultations. He is based at Gwent Sleep Clinic/Spire Cardiff.

A Dr Sarah Jackson, neurologist at Royal Devon & Exeter hospital has also been recommended by a member of the forum but unfortunately I do not have their username. Apparently she recommended a patient's GP to arrange an iron infusion to be done quickly on the NHS. Hope that helps.

[careerSquirrel in reply to Kaarina]

Thank you so much. I assume I would have to pay privately for a consultation. Dr Jose could be a possibility

[Kaarina Administrator in reply to careerSquirrel]

You would have to pay for a private consultation.

[SueJohnson]

Pregabalin is not dangerous. It can have side effects that one cannot live with but one can come off it by withdrawing slowly to prevent withdrawal effects. One not common side effect can be weight gain due to an increase in appetite but you will probably find this out very quickly and can come off it. I am on the equivalent of 250 mg and have only gained a couple of pounds.

[careerSquirrel in reply to SueJohnson]

Thanks Sue.

I had hoped that the GP would have agreed to the iron infusion firstly but he wants to increase it with supplements for the time being.

He only wants me to take 25mg at night. I doubt that will do much. So much bad press out there it’s hard to feel sure about any medication

Appreciate your feedback as always