Ongoing RLS symptoms mostly during the day. Had a few months of respite this year where it just seemed to go away mysteriously, but is now back with a vengeance.
Gabapentin 400mg three times per day doesn't seem to touch it. I take it throughout the day instead of in the evening because the RLS mostly affects me during the day.
Going to see my neuro again. What are the next steps if gabapentin isn't working? Worth trying pregabalin, or are opioids the only way forward?
(Iron levels are well into the healthy range; had an iron IV last December; have tried everything else to no avail including magnesium, iron tablets, vitamins. Tracking caffeine and alcohol intake and no obvious patterns emerge, nor from food)
Currently taking duloxetine 60mg for depression (which I'm open to reducing), minoxidil 2.5mg, finasteride 1mg/3 times per week
Written by
howbeit-abroad
To view profiles and participate in discussions please or .
You reported almost complete resolution of your RLS with an iron infusion. What was your serum ferritin 6 weeks after the infusion?Some people need several infusions to maintain the RLS free stage. Kakally reports that she has to keep serum ferritin above 300.
Can you ask for another infusion? It seems counterproductive to take medication when you can be RLS free after iron infusions.
In the meantime, there's room to increase the gabapentin. You're on 1200mg a day. The average is 1500-1800mg and many take higher doses.
Duloxetine, like all anti depressants will worsen your RLS. Safe options in the UK at present are limited. Bupropion stopped production, so there is only trazodone.
I guess I'm just not sure if that was a fluke or not! 2 months after the infusion my ferritin was 162ug/L with a transferrin saturation of 53% (so right at the upper limit). I could try and get another infusion but I'm not sure they'd approve me as the transferrin saturation is so high.
Meantime I will ask for an increase to the gabapentin, thanks. Will also try to reduce the duloxetine, perhaps adding in bupropion to 'fill the gap' so to speak (I have a source).
Another detail - six months after the infusion my iron was 202ug/L. I don't think I had symptoms then (but definitely had them badly in January, which was the month after my infusion). I guess I'm not sure I'm actually a responder to IV iron.
I suspect it can be difficult to be sure. I was reading yesterday that it can take 6-8 weeks for the effects of an infusion to be felt but equally it possible something else triggered the January bad patch. The ideal would be to have monthly blood tests to track the ferritin but I imagine that might be hard to arrange.
Joolsg Part of me is tempted to supplement with oral iron to cover all the bases, but with a tsat of 55% presumably there's actually plenty of iron in my body.
Question for you and SueJohnson - when an antidepressant aggravates RLS, is that an acute effect? For example, if I skipped a couple of duloxetine doses would that be enough to see if it was worsening my RLS, or is it a chronic effect that would require me to come off the duloxetine altogether to know if that's what's triggering the RLS?
Basically I've been in such a bad state mental health wise over the past year I'm reluctant to make big changes to my drug regimen now that I've found something that works. Ideally I'd be able to test whether the dulox is causing the RLS without having to come off it fully.
Your mental health has to take priority. Just skipping the odd dose of Duloxetine won't show if that is the trigger. Anti depressants have to be reduced slowly under a doctor's supervision. If the Duloxetine helps you, please stay on it.
In your case, I would suggest seeing a specialist haematologist as you responded to iron infusions ( it takes around 6 to 8 weeks to have an effect) so further infusions might be possible under close monitoring and supervision of a haematologist who will know about the link between TSAT and ferritin levels. And your mental health needs would be covered by the Duloxetine.
If gabapentin doesn't help after increasing it, pregabalin won't as they are basically the same drug. Then low dose opioids will be the next step unless you want to try dipyridamole.
I have been through the same journey with both Gabapentin and Pregabalin not working, and being on Citalopram (anti depressant) that makes RLS worse.
I am now on 150mg Trazodone (I believe now the only anti depressant that does not aggravate RLS), 150mg Pregabalin, and 5mg Oxycodone (opioid that is used in the treatment of RLS when all else fails).
I have been on this cocktail for just over a week now, and for the first time in years, I have not had RLS (and depression is under control).
It might not work for everyone, but at the moment, this combination of drugs is a miracle cure for me.
So glad to hear you're found something that works. I might consider a switch to trazodone then (or reduce the duloxetine and add trazodone; I've been reading some case reports where they can be combined).
Some of the common anti epilepsy drugs are now being used off label to combat depression such as lamotrigine and carbamazepine. I know several people who have had great success treating their depression with lamotrigine. The mechanism of action for these meds effects glutamate and aspartate as opposed to serotonin. May be worth a try if bupropion or trazadone aren't effective.
On a personal note, bupropion side effect of inceased agitation was a no go for me. Didn't take it long enough to notice it's effectiveness on depression.
Lamotrigine I was on for about a year with no effect on my RLS. The depression and anxiety relief was great for awhile but slowly lost effectiveness. Not uncommon. It's on my go to list to try again in the future if needed.
Gabapentin alone did not work for me.I am now still on my 1,500 gabapentin plus low dose buprenorphine and thus far am having NO RLS. Bliss! In fact I can't stop feeling sleepy during the day!!!
I am actually wondering if I should lower slowly the Gabapentin?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Gabapentin, RLS, PLMD feeling lousy next morning
Gabapentin not working
The Next Step
Recent Iron test values and next steps 
