advice re iron study results

[Minijackrussell]

Hi there,

I’ve posted previously about my husbands severe rls and most recently advised that he started taking pregabalin, this caused low mood and weight gain but did settle his rls a good bit. Since then he has dropped the dose from 175mg to 150 mg of pregabalin but it’s not holding his rls as well and he’s not sleeping as well so may have to increase his dose again. He’s weight is better as he’s watching his intake and doing more exercise. He is also on magnesium, vitamin d and probiotic L plantum. He told me that he stopped taking iron about 2 months ago as he didn’t think it was helping!!!! I took the opportunity to repeat his iron panel (I’m a nurse) and was wondering if he should go back on the iron based on these results. They appear ‘normal’ and gp happy but wondering if they are ok for rls sufferer. He used to take 60mg ferrous bisglycinate at night. Results are serum iron: 15.9 mm old/l, transferrin 2 g/l, %transferrin sat 31.8% and ferritin 113.

I really appreciate your responses.

Thank you

[SueJohnson]

He certainly could if he wants to. It needs to be over 100 for RLS but some experts think it should be over 200 or even 300.

[ChrisColumbus]

Was the test taken in the morning after fasting as per the RLS UK paper on iron therapy?:rls-uk.org/_files/ugd/b0a19...

If not his ferritin result could be artificially high; if the test *was* morning and fasting he's still got space in his TSAT % to drive his ferritin higher towards and above 200 (which is more likely to help RLS symptoms) - although it will be a slow process through oral supplementation.

I've never had a ferritin result much under 200, usually around 250. And I no longer have RLS symptoms, without medication but being careful with sugar, artificial sweeteners and caffeine (although the latter reportedly helps some).

BTW, you'll probably be aware that the usual effective pregabalin range for RLS is between 150 and 450 (see Mayo Algorithm), so he's currently at the bottom of that range. Keeping on top of food intake and exercise is half the battle with higher levels of pregabalin

mayoclinicproceedings.org/a...

[Minijackrussell in reply to ChrisColumbus]

Thanks Chris

Yes I took the bloods at 8am fasting so true result. I’ve shown him the replies and he may go back on the iron to see if it helps. The pregabalin is tricky because he feels if he ups the dose even by 25mg his mood can go quite low at times and he has brain fog with even 175mg. Perhaps the iron might help and he can stay on lower dose of pregabalin. Many thanks for your response.

[ChrisColumbus in reply to Minijackrussell]

Sounds like a plan - good luck to you both! Magnesium can impact absorption of iron, so these should be taken a couple of hours apart.

BTW, SueJohnson reports that some find the side effects that they experience on pregabalin are less on gabapentin (and vice versa). The issue with gabapentin is of course that he'd have to take more and split the doses a couple of hours apart - a 600 and a 300 to be equivalent to his current 150 of pregabalin.. (and take any magnesium a minimum of 2-3 hours away from gabapentin)

[amrob123]

There's a small chance that increasing iron will help but personally i wouldn't be holding out too much hope and would be exploring what other options are available to your husband in the meantime. I have taken pregabalin for well over a decade (various doses) and though it works reasonably well, as i keep saying, the downsides are considerable.

[Minijackrussell in reply to amrob123]

Thanks Amrob, we have explored many different options including lifestyle, non pharmacological and unfortunately he was on pramipexole for 2 years a few years back and had severe augmentation. To wean that he was on gabapentin but again he had a lot of side effects. As you say he needs to keep trying to find a solution but sometimes the side effects to the meds are tricky. Thanks again

[SueJohnson]

He may need to add a small amount of a low dose opioid to get complete relief. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often

[fritzb43]

Most RLS doctors in the US say that a ferritin of 100 is the bare minimum and that some patients need more , often much more, say 200 or even more, depending on the individual.

Discontinuing iron is probably the *worst* thing he could do.

[Minijackrussell in reply to fritzb43]

Thank you, he’s back on it now,