An update on my husband’s battle with RLS

[DreamerTED]

We’ve asked this group for help and followed your guidelines re:  timing and type of iron, timing and amounts of Gabapentin and advocating for an iron infusion.

We live in Ontario, Canada.

1st Infusion - May 4/ 22

Slightly more sleep - going from 2-3 hr/night to 3 or 4 hrs/night.  RLS bad every night, often going to bed at 6:30 because he couldn’t stand it.

Slowly reduced Gabapentin from 1200 mg. to 500 mg. (Had gained 50 lbs. in past year)

2nd Infusion - July 22  (Ferratin went from 48 before infusions to 120 a month after second infusion.

No increase in sleep after second infusion.  Some nights awake all night.  Bad RLS, going into the back.

3rd Infusion - October  17 2022

RLS so bad, going to bed at 6:30 and getting 5 hours of sleep despite 13 hours in bed.  Up and down all night.

Reduced Crestor (5 mg) to every other day - November 4/22

Nov. 9 Slept a lot.  Other days slept around 4 hours, RLS bad usually to midnight.

Past 6 nights:  at least 6 hours/DEEP sleep and 9 last night.  Still needs to go to bed between 6:30 and 8:30 because the RLS is driving him crazy.  BUT, from midnight RLS is gone and he can sleep.

Do you think the reduction in Crestor is helping him or did the 3rd infusion finally give him enough iron in his brain to help with the RLS?

[SueJohnson]

Crestor like all statins can make RLS worse so that is likely the cause.

[DreamerTED in reply to SueJohnson]

Thanks so much for your quick response and affirmation.

[Joolsg]

This is Interesting.I see from previous posts your husaband was on Mirapex but stopped that and started gabapentin.

Now he's reduced down to 500mg gabapentin due to gaining weight. He's had 3 iron infusions. He's just stopped Crestor, a statin and the RLS is improving.

It could be the iron infusion or dropping the crestor or both that has allowed recent good sleep.

There's no way of knowing which one is responsible.

However, now he is reducing the gabapentin, the RLS may flare up again, despite the benefits of the 3 iron infusions.

If your husband is still suffering RLS every evening, it would indicate he has severe RLS still so he will possibly need to consider alternative meds as per the Mayo Clinic Algorithm. Perhaps a low dose opioid as that doesn't cause weight gain.

[DreamerTED in reply to Joolsg]

Thanks for taking the time to add your expertise, Joolsg.

[Hidden]

I don't see that it's necessarily one or the other it could be a combination of both The only real way to know is by continuing to reduce the Crestor, and then ultimately iron levels will return to pre-infusion levels and you will get a true picture then.What struck me about your post was that hubby's ferritin didn't increase all that much with the 2nd infusion. Unless he was given a lower than usual dose, you'd expect to see more of an increase...

[DreamerTED in reply to Hidden]

We are awaiting our doctor's interpretation of the blood test that took place a month after the third infusion. They've changed their terms and we need clarification. Not sure what his ferritin level is now.

[ChrisColumbus]

Crestor = Rosuvastatin. While it's not generally as bad as Atorvastatin for exacerbating RLS, which is why my GP asked me to try it, I still had to give it up. Both my stroke consultant and my GP eventually (reluctantly) agreed that I couldn't tolerate statins because of RLS and put me on Ezetimibe. It's not as fast acting as statins against cholesterol but it does work, and doesn't trigger my RLS. Talk to your doctor about changing: most are still wedded to statins, but there are alternatives. (Changing to a vegan diet is probably even more effective, but I can hardly recommend that as I can't stick it myself! But I have reduced my meat intake, eat more vegetables, and don't use milk)

[DreamerTED in reply to ChrisColumbus]

Thanks! I hear you on the vegan. We try one or two dinners/week. So tough.

[enjoy2013]

Just trying to see how we can help:

- does he exercise? Some exercise may help (not too much, get the legs to get fatigued by the exercising.

- I'd suggest, if ferritin levels allow, to try iron tablet in the evening. Taking it in the evening can make a difference

- avoiding triggers such as sweet foods, icecream and many othersa

[DreamerTED in reply to enjoy2013]

He does take the Iron Bisgycinate then. No coffee for 25 years, virtually no alcohol in past year, no ice cream, and often a piece of chocolate helps him to go to sleep.

[Shir_11]

I am surprised that he can go to bed at 6.30 - 8.30 because the RLS is driving him crazy. I cannot lie down in bed when RLS is bad. I have to move around for hours.