What form of iron?

[feetgrind]

I am tormented nightly by RLS secondary to Peripheral Neuropathy of many years standing despite taking 300mg of Pregabalin for years. I have resisted the DA's the Neurologist prescribed - I would rather suffer than go down that route and I am thinking that an iron supplement might be worth a try at least until I can convince him to prescribe a low dose opioid. I also suffer from IBS so I would appreciate some advice, please, on what form of iron would be best tolerated.

[Hidden]

There is a supplement known as "Gentle" iron, which as you'd guess is gentler on the gut. It is ferrous bisglycinate.

Its negative effects can be reduced and in fact its effectiveness increased by taking it alternate days and NOT daily,

[feetgrind in reply to Hidden]

Thanks Manerva for your advice - informed and prompt as ever. I'll give the ferrous bisglycinate a try (every other day) - it would be great to get some decent sleep for a change!

[Hidden in reply to feetgrind]

It may take a while to have any effect. It depends on your ferritin level.

[fishinphil1946 in reply to Hidden]

Manerva,

Formerly Berteau, now fishinphil1946. Went to a local sleep/pulmonary MD yesterday. I told him a few things I learned from you and others. He was pleased with my information. He admitted that the UK was ahead of the US in RLS knowledge. The US standard for iron supplement therapy is less than 50 for ferritin (not sure of the units). I believe the UK standard is less than 200. I am having difficulty obtaining my ferritin test results, but I am quite sure it is less than 200. Therefore, we decided to try 1 tablet of 325mg Ferrous Sulfate (65mg Iron)/day at meal time. I am also trying to get off my 2mg/day pramipexole by reducing 0.125 /2 weeks for about 32 weeks. I take 1200 mg gabapentin/day. I have been on pramipexole and gabapentin for about 9 years. I have gained 60 lbs during the 9 years. I am thinking about the 5:2 diet plan. I am 75 years old. Any comments would be greatly appreciated. Thanks

[Hidden in reply to fishinphil1946]

Hi there.

I'm not so sure that the UK is ahead of the US as regards RLS. You have quite a few RLS centres and RLS experts of international repute in the US.

None here!

The international standard for oral iron supplementation is if ferritin is under 75. The units are not that important as the number is the same US/UK + Europe.

See this link

sciencedirect.com/science/a...

You can use an oral iron supplement if your ferritin is over 75 but it might not work so well. It should be possible to raise it to 100 which can benefit 50% of people.

Ideally, as the article says, it needs to be at least 200. In that case an IV iron infusion may be necessary. You can't really get it that high with a supplement.

It would be a good idea to check your ferritin again then, or find out the result because if it isn't less than 75 you may be wasting the supplement.

Ferrous bisglycinate (Gentle iron) is quite popular as it is causes less problems for your gut. Ferrous sulfate - not a good idea.

To increase its effectiveness it's best to do the following.

1) Take it on an empty stomach, 30mins before or 3 hours after eating.

2) Drink orange or take a vit C tablet at the same time.

3) Take one or two once every alternate day, not daily.

It can take months to work.

It's good that you're reducing the pramipexole. I am horrified that you're taking 2mg, this is over twice the maximum dose. Unless you've written it wrong.

Reducing it by 0125mg very two weeks sounds a good plan at first.

You will probably find that you have withdrawal effects at each reduction.

You may find that these get worse as the dose gets lower. In which case either cut the dose by a smaller amount or lengthen the time between cuts.

I reduced my pramipexole by half a 0.125 tab every four weeks from 0.75mg. This would unfortuntaely prolong the withdrawal.

See how you go.

There are 3 possible reasons you've gained weight. One is that it's a side effect of pramipexole. Two is that it's a side effect of the gabapentin.

Three - I hope doesn't apply to you. Dopamine agonists such as pramipexole in a few cases causes an Impulse Control Disorder (ICD). This can take the form of compulsive eating. I'm guessing you don't have this. It can make withdrawal even more difficult.

It's almost impossible to predict what might happen once you've totally withdrawn from the pramipexole.

If you're currently experiencing augmentation, then as withdrawal effects fade your symptoms will improve.

Once you've completely withdrawn you may find any one of the following -

1) Your symptoms are satisfactorily controlled by the gabapentin

2) You may find you can decrease the gabapentin because it's no longer "fighting" with augmentation or withdrawal.

3) Hopefully not , you may have to increase the gabapentin or switch to an alternative.

As regards gabapentin.

If you're currently taking the whole 1200mg as a single dose then it is better to split it into two doses 900mg (or 800mg if possible) at your "normal" time and 300mg (or 400mg if possible) 2 - 3 hours earlier. Strange as it sounds this will make it more effective.

Alternatively, it may be better to switch to pregabalin, if you can. This is more potent than gabapentin, you would only need 200mg and you only need to take this once a day.

There is no point increasing gabapentin to over 1200mg, it won't be any more effective, so again, best to switch to pregabalin.

Another thing you can do is if you're taking any other medicines for any other condition then there's a quite a long list of medicines that make RLS worse.

I hope this helps.

[fishinphil1946 in reply to Hidden]

Thanks so much. I was taking pramipexole .5mg at 8am, .5mg at 5pm and 1mg at 9pm. The 2 week reductions are 0.125 rotated 8-5-9, etc. The 1200mg gabapentin is taken at 5pm and 9pm (2- 300mg at each time). I get what has been diagnosed as family inherited neuropathy in my feet, ankles and shins all day long. The RLS tingles are generally in the feet, arms, and occasionally my arms want to jump. Most of the neurological symptoms seem to be worse when I don't get even 4 hours of interrupted sleep and or have an above average active day. I find some needed relief in the evenings by wearing compression socks. A simple device called a Sock Slider helps put on the socks.

[Hidden in reply to fishinphil1946]

I only ever took pramipexole once a day at the maximum dose, which is officially 0.75mg.

Certainly the risk of augmentation is increased the higher the dose you take and the longer you take it. Rates of augmentation for people taking 0.5mg is about twice that for someone taking 0.25mg.

The incidence of augmentation in people taking 0.5mg is 7% year on year, i.e.14% after 2 years, 70% after 10 years and virtually 100% after 14 years.

Your case is complicated because you may find some difficuty distinguishing between symptoms of neuropathy and symptoms of RLS.

If you are getting symptoms of RLS in parts of the body other than your legs and are getting them during the day, then it is highly likely you are suffering augmentation.

You are quite right then in reducing the pramipexole and your idea of rotating the reductions is good I'd say.

You may sleep better at night if you split the gabapentin 300mg and 900mg . Unfortunately gabapentin doesn't work so well whilst you have augmentation.

I hope the pramipexole withdrawal goes well for you.

[fishinphil1946 in reply to Hidden]

Thanks and I will try 300 at 8am and 900 at 8pm. I may change my 9pm pills to 8pm. These include 10mg atorvastatin, 5mg melatonin, 50mg trazodone, and 10mg cetrizine HCL. The atovastatin and cetrizine could be discontinued if these make RLS worse. The melatonin and trazodone are sleep aids. I dropped down 0.125 pramipexole yesterday and did not have a good sleep. I started the FeSO4 yesterday, but I probably need a vitamin C supplement or some oranges for the iron.

[Hidden in reply to fishinphil1946]

I'm not sure about the atorvastin making RLS worse, not all statins do that.

Cetrizine is not a sedating antihistamine so shouldn't really have an effect on your RLS.

Melatonin can make RLS worse.

Unfortunately every time you reduce the pramipexole you will get withdrawal effects including loss of sleep. Withdrawals can fade in 2 weeks.

[fishinphil1946 in reply to Hidden]

OK. I have some new ideas to try. Will report back in a couple of weeks. Thanks!

[Hidden in reply to fishinphil1946]

Let us know.

[BoldMove]

I take Easy Iron from Puritan Pride. It contains vitamin C which is needed to properly absorb the iron. It works better taken on alternate nights rather than nightly. I read why long ago, but don't really remember. It's not been a cure, but after a few months on the supplement I found a lessening of symptoms most nights.

[LotteM in reply to BoldMove]

That is good news about the lessening of symptoms, BoldMove. I always like positive news.

I don't know since when you have taken the iron supplement, but it may be wise to have your blood tested regularly and get a full iron panel to see 1) whether and how much your iron has changed, and 2) whether the iron values don't get too high. I aim for a blood iron panel about every six months.

[BoldMove in reply to LotteM]

Both iron and D are checked every 6 months.