Leg stiffness when reducing Pregabalin

[Moonwalker1967]

Hi all! I am reducing from 200 mg to 100 mg as the side effects are horrendous.

Now getting back to 4 hours sleep and leg stiffness in the morning. Does anyone else experience the leg stiffness?

Side effects of Pregabalin were:

Dizziness (had a couple of falls even), dark thoughts, blurry vision.

I live in the UK and working a 40 hour week.

I desperately need to reduce and my employer has refused to allow part time work.

Please help!

Thanks so much in advance!

PS: Quality of life is non existent! All that money I am earning is no good as I can't use it to make me better!

[Joolsg]

Before you reduce the pregabalin, did your doctor discuss and arrange alternative treatment?RLS doesn't just disappear.

As you stop pregabalin, you will get RLS back again.

As dopamine agonists and pregabalin have now failed, you have refractory RLS.

Have you had full iron panel blood tests?

If not, make a 20 minute GP appointment, send an email in advance setting out that you want to discuss and arrange iron blood tests and low dose, long half life opioids.

You could start on Oxycontin ( Targinact) as it does work well for many. However, it can cause mini opioid withdrawals, resulting in RLS, for many patients. In that case, you can try taking it every 6 hours rather than twice a day. Targinact is licensed for RLS, but is expensive. Many prescribing areas use plain Oxycontin.

If that doesn't help, many of us are now taking Buprenorphine, which has a 25 hor half life. I take 0.4mg at night.

[Moonwalker1967 in reply to Joolsg]

Thanks, Tools! I have a GP appointment for Thursday. This disease is a nightmare and it's so hard to cope with work.

[Moonwalker1967 in reply to Joolsg]

Thanks, Tools! Soz, auto correct!

[Joolsg in reply to Moonwalker1967]

🤣 I quite like my new nickname.

[Moonwalker1967 in reply to Joolsg]

Lol, that's the result of working and trying to message! Do accept my apologies!

[SueJohnson]

I suggested you switch to gabapentin. Did you try that?

You need to reduce the pregabalin very slowly to avoid withdrawal effects. Reduce by 25 mg every 2 weeks. If you do so you will have very few or no withdrawal effects.

Leg stiffness is a symptom of RLS so reducing the pregabalin is the cause of that.

I remember your ferritin was 75. Did you try taking iron tablets to raise it?

Take Joolsg's advice on opioids.

[Moonwalker1967 in reply to SueJohnson]

Thanks, Sue! I just reduced Pregabalin by 100 mg. GP appointment is best option, I hope! Definitely, not reduced slowly as per your suggestion. The lady at the chemist suggested just to take one tablet as it's addictive. :(Yes, I am taking iron, as I don't eat meat. How much am I allowed to take? Taking 14 mg per day. Are there any iron tablets you can recommend? I know that I need to take those with vitamin c!

PS: Just bought some magnesium spray, see if that helps!?

[SueJohnson in reply to Moonwalker1967]

Which iron tablets are you taking?

You need 65 mg of elemental iron which isn't always the mg on the bottle.

[Moonwalker1967 in reply to SueJohnson]

14 mg Ferrous Fumarate Brand Vitaminstore bought at Wilko

[WideBody in reply to Moonwalker1967]

Ferrous Fumarate is 33% elemental iron. Read the label, it may only be 5mg of elemental iron.

[Moonwalker1967 in reply to WideBody]

Thanks, so I need to take more of those tablets. Your help is much appreciated, WideBody.

[SueJohnson in reply to Moonwalker1967]

You would need to take 14 tablets so you will use them up pretty quickly. Then get iron bisglycinate (gentle iron). The mg of the tablet are the mg of elemental iron. You can usually get 26 to 28 mg so would only need 3 tablets.

[Moonwalker1967 in reply to SueJohnson]

Hi Sue, I have just seen my GP and was put onto Gabapentin as per your suggestion.

My GP also did a referral to neurology in Sheffield but it will take a year for me to be seen. Unbelievable!!!

Since, she considers me responsible re. tablet dosage, I am supposed to be dosing my own Gabapentin according to my needs.

I was on 200 mg Pergabalin until now. Can I switch straight to Gabapentin and what dose will I need. GP suggested 200 mg in the first week.

Thanks again for valuable advice.

[SueJohnson in reply to Moonwalker1967]

Yes you can do a straight switch. 1200 mg gabapentin is the equivalent dose (6 times the pregabalin amount). As a reminder since you need more than 600 mg take the extra 600 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. Once a few days have gone by for you to see if the side effects are acceptable you can increase it by 100 mg every couple of days until you find the amount that controls your symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin." Take the amount over 1200 mg 6 hours before bedtime. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.

[Moonwalker1967]

therange.co.uk/health-and-b...

[WideBody in reply to Moonwalker1967]

That is an awful link. What formulation or iron is it? Ferrous Sulfate? Iron Bisglycinate? 14mg is no where near enough.

First don't supplement at all if you are going to take a blood test soon.

After the blood test, you need 65mg of elemental Iron, which is equal to 325mg of Ferrous Sulfate.

Take iron at night on an empty stomach, 2 hour before bed. Take iron with Vitamin C to aid absorption. Nothing to eat two hours before or one hour afterwards. This is really important for me. The iron binds with the proteins in the stomach and for black stools.

Also, check your Vitamin D levels! Vitamin D is important for Iron absorption and metabolism.

Good Luck, pregabalin was a B*&Tch to get off off. I had hot and cold sweats, couldn't control my temperature and a few dark thoughts. Take care of yourself.

BTW, I switched to Dipyridamole. So I am 80 percent drug free.

[Moonwalker1967 in reply to WideBody]

Thanks, for your help.

[SueJohnson in reply to Moonwalker1967]

WideBody answered your question but let me add a little. 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 as WideBody said 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. Since 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.

[Moonwalker1967 in reply to SueJohnson]

Thanks, Sue! That's super helpful!

[Keith1231]

Are you taking other medications, some will have an adverse affect on RLS?

[Moonwalker1967]

I have no thyroid gland and am on L-thyroxin 100 mg. Thanks!

[Fatno]

Pregabalin is a NIGHTMARE drug!!!! It's dangerous & I cannot believe the high doses people take (& are apparently able to function.) I was on a small dose for only 6 months so the only withdrawal symptom was some insomnia. For the most part, getting off that drug was a relief. Best wishes!!

[RiversW in reply to Fatno]

It really is amazing how we all react so differently to medications. I have been on pregabalin for 6 months and aside from some equilibrium issues (not to be minimized) that passed after a few weeks, I have had no trouble with the medication.

I hope you found a good alternative!

[lovedoncebefore in reply to RiversW]

Sometimes it can be down to brand. I reacted badly to two brands even Lyrica. Both had PG in them 3rd one didn't I was better with that one. Its not a good drug to take longterm I know

[Keith1231 in reply to Fatno]

I started taking Pregabalin in December last year 150mg per day. My jumpy legs and arms have gone however, I still didn't sleep that well. My GP increased the does, I got to 275mg after another 6 weeks and couldn't function. My balance was dreadful and the weight gain was also affected. I started reducing the does, I am now on 100mg and getting a few withdrawals which are manageable. Although I am still not sleeping that well I don't have RLS.

[WideBody]

I would like to ask about your leg stiffness. Can you explain it? When I get out of bed, sometimes my legs stiffen up. It's hard to walk the first few steps. It used to happen more frequently. I would call them "mud legs". It still happens, just not as frequent.

Sometimes at night, when my RLS is going, I stiffen up too. It's like I have to tell my muscles to let go.

Or maybe RLS is just driving me crazy.

[Moonwalker1967]

Yes, exactly like having to tell my muscles to let go. It happened when I didn't get enough Pramipexole, when going off it and now when I was reducing Pregabalin. Also my knees seem stiff and I am slow walking.It used to be like that in my toes as well (toe stiffness) and my toes twitch when I am off to bed in the evening as well. It's an uncomfortable toe movement. I can only stop it by holding them. That's new and started with taking Lyrica.

WideBody it's a strange disease. So many different versions of it!!!