Am now taking pregabalin 200mg and this mostly seems to be working. Recent evenings I've been getting some 'aggitation' but so far walking a bit has helped. I have 0.25 mg tablets to increase dose if needed but am reluctant to do this yet! What's the maximum I can take? My serum ferritin results were 129ug/L 20.0-275.0 All of this means nothing to me. GP says normal but has prescribed iron tablets
Mostly I can report that coming off ropinirole has been amazing so hang on in there anymore who is attempting this. It's not easy but is so worth it
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I can't answer the pregabalin question but many others here will be able to help.
Your ferritin level of 129 is within your doctor's reference 'Normal' range that he gives as between 20.0-275.0. (This varies a bit from authority to authority).
While the recommended serum ferritin range for RLS sufferers is over 100 and ideally nearer 200, few doctors know this and most would have accepted 129 as perfectly OK. While perhaps your doctor is RLS knowledgeable and feels getting nearer 200 would help you, in my view it is more likely that something else in your blood test results indicates that you could use an iron boost.
From WebMD:
"There are several different tests to check the level of iron in your body. These tests show how much of the mineral is moving through your blood, how well your blood carries it, and how much iron is stored in your tissues.
Serum iron. This test measures the amount of iron in your blood.
Serum ferritin. This test measures how much iron is stored in your body. When your iron level is low, your body will pull iron out of “storage” to use.
Total iron-binding capacity (TIBC). This test tells how much transferrin (a protein) is free to carry iron through your blood. If your TIBC level is high, it means more transferrin is free because you have low iron.
Unsaturated iron-binding capacity (UIBC). This test measures how much transferrin isn’t attached to iron.
Transferrin saturation. This test measures the percentage of transferrin that is attached to iron."
The maximum dose for RLS is 450mg, so you can safely add 25mg every few days and observe effects. You could even try splitting the dose to extend the half life/effects. Perhaps 50 -75mg about an hour before your evening symptoms normally start, and the rest just before bed.I'm impressed that your GP has prescribed iron to further increase your serum ferritin. Most would say a figure of 15 was fine!
Some need serum ferritin above 200 before they see improvement. Kakally needs her levels at 300.
Thanks Jools. Great advice as always. Maybe I'm just beginning to get on the GP's nerves now!? I'm going to take the iron for a while and see if it makes any difference. At the moment I'm enjoying the feeling of going to the cinema in the afternoon or watching some telly in the evening without the dreaded RLS kicking in thanks to the pregabalin
As Jools says, 450mg is the maximum dose but increased dose tends to mean increased side effects. The aim should be to stay on the lowest dose possible. Even when I took 300mg of pregabalin (which I did for years), it only worked around 80% of the time. I could live with that as I didn't wish to go beyond 300mg - the side effects at that dose were already considerable.
In terms of iron you should buy ferrous bisglycinate and take 28 to 50mg on an empty stomach about two hours before bed. I can’t recall if it needs to be away from the Pregabalin. Doing this relieves my RLS in one hour, or so, for one night.
If you feel like testing the validity of my treatment then the next time you feel that break out restlessness while watching TV, pop one or two capsules of the iron and see if you can feel the RLS melt away as below:
Many thanks for this. I had a terrible 'session' last evening and into the night so feel very tired and depressed at the moment. Really hoping I just need to find the right dose of pregabalin because I don't know what other options there are, if any. I'm going to try your advice re iron as it certainly sounds good to me.
And you might want to try magnesium glycinate by day. At night try sleeping on your stomach, wear a night cap and eat nothing after 7pm. Here’s magnesium success story:
Greekstudent profile imageGreekstudentdavchar23
1 month ago
I buy magnesium capsules from Bettervits and take two in the morning (I guess that time is arbitrary and others might choose different timings). I think the max daily dose is around 300mg, and I think it is dangerous to take too much daily. As I said, I started on M having read of its efficacy in reducing leg cramps and periodic leg movement disorder(which it has); it had not occurred to me that it might deal with RLS also. In fact from my reading it seems that M plays a major role in many pathways and systems in the human body. The capsules I take include several forms of M and also Zinc which apparently helps the body to take up the Magnesium. I hope this is helpful.
davchar23 profile imagedavchar23Greekstudent
1 month ago
Thanks for your reply. if you changed to Gaapentin how can you be sure that alone did not improve your RLS not the Mg?Kind regards
Greekstudent profile imageGreekstudentdavchar23
1 month ago
I deduce that magnesium is the cause of my RLS ceasing from the fact that I no longer have to take gabapentin at all.
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.
Hi I take 350mg Pregabalin with iron tablets but you can safely go up to 450mg. However, my RLS is so bad that I take Targinact too (opiod with anti opioid to avoid addiction). Good luck, and hope you never get as bad as me.
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