Iron Levels

[JOBAN1uk]

79yo male with classic tale of RLS. Started at 17yo. Progressing over the years. Augmentation last Christmas on Pramipexole and a hell of a time transitioning to gabapentin. Unfortunately though I could not stop the attacks even on high doses and taking it as advised by Sue Johnson.

Helpful doc allowed me to switch to Pregabalin and self medicate to find a working dose. Have had two new knees in the last year which meant I had to raise the dose at times. For three months after the operations the RLS always started up severely in and below the operated knee.

When there are no triggers I am on `3x200mg of Pregabalin which I take about 7.00pm

When there are triggers then I have to take an additional Pregabalin plus 2x Tramadol which normally stops the RLS

Triggers are Red wine - the worst and rarely drunk-,other alcohol, heavy leg exercise, cold legs and tiredness. Most likely in that order.

After continued recommendations I have finally had an iron panel taken as advised by Sue Johnson

Results

Serum B12 500ng/L

Serum Folate 4.05ug/L

Serum Ferritin 87 ug/L

I would really appreciate your advice as to any necessary treatment needed.

Also on would basis would I be able to justify an iron infusion as my doctor wasn't very keen when I mentioned it before.

My RLS continues to gradually worsen so what would be my next change of drugs you would recommend.

Thanks John

[SueJohnson]

Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout, don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

[Joolsg]

As you've been on gabapentin/pregabalin for over a year, and your RLS is still bad, it is now refractory.You are very unlikely to get an iron infusion in the UK on the NHS. St George's in Tooting and the Royal Cornwall in Truro are aware that iron infusions resolve majority of RLS, but they are all under pressure and are rationing infusions.

If your transferrin saturation percentage is below 48% you may be able to get a private iron infusion. The Iron Clinic in Harley Street will do one for around £800.

If that doesn't help, you can ask for Buprenorphine.

[ChrisColumbus]

I presume that you are in the UK based on the end of your profile name? It can be very difficult to get an NHS infusion here unless one is diagnosed with anaemia. But perhaps as your GP just 'wasn't very keen' rather than just ruling it out you have a chance locally?

(I see that Joolsg has responded while I've been typing so have edited)

[Joban1 in reply to ChrisColumbus]

Thank all of you for your very helpful replies. I will study them and form a plan.