The Next Step

[Dires]

Here I am again!

I’m feeling pretty desperate this morning, so tired after yet another bad night. My symptoms are worsening in that they are now apparent in the evening as well as night. I’m now twitching and jumping in the night as well as restless legs. The symptoms don’t settle early morning as they used to. I used to rely on the few early morning hours to get some sleep.

So far I have been taking Ferrous Bisglycinate 20mg alternate nights, Vit D, Vit B12, Magnesium.

I was hoping I could manage with the symptoms using Zopiclone on the odd night until my Ferritin Levels came up above 50 OR that the GP would refer me for infusion , but GP is reluctant to prescribe more Zopiclone. I cannot manage another 3 months waiting for levels to rise.

I have to admit that I have been resistant to using Pregabalin ( Sue’s suggestion) due to the side effects. I have not actually been offered any drug treatment apart from Codeine 30mg at night which has not helped at all.

As you may have read, my GP has been less than helpful and I am in the process of writing to the Practice Manager.

My questions are:-

Do I request Pregabalin while waiting for Ferritin to improve. I am going on holiday in two weeks time (in the uk) and wonder if I could manage the side effects while I’m away?

OR do I ask for something to help me sleep and start Pregabalin after my holiday?

Do I insist on referral for iron infusion ?

I am considering asking for a private referral to a neurologist but need to manage my RLS in the meantime.

Sorry for the ramble but any suggestions gratefully received.

[Joolsg]

Yes insist on referral for an iron infusion BUT be aware that it will not help everyone with RLS.In the meantime, you are not getting sleep and you do need some help. As 30mg codeine is not helping, you should consider pregabalin. The side effects are dizziness and water retention and increased appetite. But not everyone experiences them and they do settle after the first few months.

Your GP is right to refuse more zoplicone. It should only be taken short term for insomnia and it doesn't stop RLS symptoms so you are wakened by RLS but feel groggy, increasing the risk of falls. Pregabalin would be a better option as it reduces RLS symptoms AND has a sedating effect.

[SueJohnson]

Yes it is time to ask for pregabalin. I'm sure I have given you this information before but you weren't ready for it so let me repeat it. Beginning dose is usually 75 mg . It will take 3 weeks before it is fully effective. After that increase it by 25 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. Most of the side effects of will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg daily." It's also best not to take calcium within 2 hours of taking pregabalin as it may or may not interfere with its absorption.

I would start it now. The side effects aren't likely to kick in in 2 weeks time, and if they do, stop it until after you get back.

I would also insist on more Zopiclone until the pregabalin kicks in. Since that will be a short time, mention that fact to your doctor.

Good luck.

[Dires in reply to SueJohnson]

Thank you again Sue. You are right, you have mentioned it to me before and I was resistant.

I assume, as I’m 71 years, that I start on 50mg. Do I still increase by 25mg at the same rate?

How long before I feel the benefit?

Will I be on this for life or will it’s effectiveness reduce in time?

I’m sure I’m asking the same questions over and over. Sorry.

[SueJohnson in reply to Dires]

The usual recommendation is 50 mg to start if you are over 65 but the reason is because he "elderly" are more likely to fall if they are dizzy in the morning which can be one of the side effects. I am 82 and started at the equivalent of 75 mg and haven't noticed this is much of a problem nor do I think of people over 65 as elderly which is why I recommend 75 mg, but it is up to you. Yes increase at the same rate. Yes you will be on it for life. It's effectiveness may decrease after a number of years in which you simply increase the dose by 25 mg.

[Dires in reply to SueJohnson]

Ok Sue, thank you again. Let’s see how it goes, fingers crossed 🤞

[SueJohnson in reply to Dires]

Oh and how long before you will feel the benefits is generally at least the 3 weeks and after that it really is different for each of us.

[Dires in reply to SueJohnson]

So is it ok to take something like Zopiclone while waiting for it to kick in? Maybe not every night?

[SueJohnson in reply to Dires]

That's fine.

[Munroist]

I would try pregabalin because it may help and if not, or if the side effects are too much then it's pretty easy to come off it.

I used Pregabalin with very minimal side effects although it was prescribed for neuropathic pain at the time. It didn't do much for my RLS as far as I remember but it also wasn't that noticeable at that time anyway .

I started at 150mg a day (2 x 75 mg) and then doubled the dose to 300mg a day after a week at which point the benefits were much more noticeable. I came off it after a year, reducing in 75mg steps, each separated by a few weeks so I could understand the changes and not panic. I'd say it's better to take it slowly so the changes are not too dramatic and you are not tempted to increase the dose again, although it wasn't a big deal either way.

I did find the pregabalin made me slightly "foggy" in the same way that a couple of drinks might affect you and once off it again there was an increased clarity of mind that I hadn't noticed I'd lost. However it was quite subtle and if I was not sleeping at all then it would definitely be a price worth paying to get some decent rest.

[Jetto]

you would be better off with 10mg of Methadone than Iodine

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