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Restless Legs Syndrome

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1)Successfully Weaning Off Pramipexole 2)Antibiotics Causing Flareups

WendyBea profile image
10 Replies

Thank you, Sue and Jools, for your advice many months ago. You rightly suggested I was suffering from augmentation. I didn’t think that was my problem, as I was already on half the Pramipexole that I had been started on years ago. A long time ago, I had replaced some of my previous dosage with Codeine 30s x4 per day.

However, you were correct. In February, I begin reducing my daily dosage of 2x .25 mg tablets per day (.50mg total) by cutting the pills into quarters. I reduced my dosage by 1/4 of a .25 mg tablet every 2 to 3 weeks and added Gabapentin. At first, my Gabapentin dosage was too high, and I was like a zombie. I slowly reduced it as well over the last seven months. I am now down to one half of a .25 mg Mirapax tablet and 2 x 400 mg GABA +120 mg of Codeine daily. I expect that well before Christmas I will be completely off Pramipexole . Hooray!

This is a remarkable achievement considering I first was put on it by a sleep specialist specialist in the mid 1990s. I am now 82 and have had severe RLS since my forties. I think I have tried every other drug recommended for it over the years, and I have finally hit upon the right combination and hope to soon be on just Gabapentin and Codeine 30s. I still have mild to moderate symptoms most days, but nothing s severe as before. I was diagnosed by one doctor as having. “ refractory RLS.”.

So again, thank you!

What I am also writing about today, though, is something new I have noticed. The last couple of times I have been put on antibiotics , I have had to stop taking them after two or three days because of unbelievable RLS attacks. When I got to the point where there was simply no living with them, I stopped taking the antibiotics. I would like to know if anyone has ever mentioned qthis problem before with antibiotics? The first time it happened, I was taking a cocktail of three for H-Pylori, and the last time I was on Ceflex for a bladder infection. I am now terrified of needing an antibiotic again.

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WendyBea profile image
WendyBea
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10 Replies
Madlegs1 profile image
Madlegs1

This is a conversation from a while back on this site.

healthunlocked.com/rlsuk/po...

WendyBea profile image
WendyBea in reply to Madlegs1

Thanks so much!

SueJohnson profile image
SueJohnson

That is great that you are down so far. You have probably forgotten since it was so long ago about how to take gabapentin so let me repeat it. My apologies if you do remember.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. Since you are taking more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, even in a multivitamin, take it at least 3 hours before or after gabapentin as it interferes with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason.

I haven't heard of antibiotics making RLS worse but everybody reacts differently to medicine. That is terrible because there are going to be times you may absolutely need them. If that happens I would ask for a low dose opioid temporarily to stop the RLS.

WendyBea profile image
WendyBea in reply to SueJohnson

Thanks for the encouragement and the reminder! No need to apologize for the reminder, as I did forget some of it. I usually don’t get to bed until 1 a.m. and I take one 400 mg. Gabapentin around 5-7 p.m, then one around 10:30-11 p.m., so I guess I should adjust the earlier dose and take it later.

Aren’t my Codeine 30s a low dose opioid? Maybe I could just take extra of those, or do you mean something stronger? I am so grateful for your knowledge. Thank you again.

SueJohnson profile image
SueJohnson in reply to WendyBea

Yes they are a weak opioid so you might need something stronger.

WendyBea profile image
WendyBea in reply to SueJohnson

Thanks again.

SueJohnson profile image
SueJohnson in reply to WendyBea

After saying I hadn't heard of antibiotics this post came up today healthunlocked.com/rlsuk/po...

SueJohnson profile image
SueJohnson in reply to WendyBea

I would ask for a prescription for 100 mg of gabapentin and then add two 100 mg capsules to the 400 mg and take it at 11:00 and then take 200 mg at 9:00.

WendyBea profile image
WendyBea

You’re terrific. As it happens, I have some 100s left over, so I’ll give that a try. My doctors all seem willing to let me experiment with dosages, and I’m fortunate to have a retired family physician living with me ( my spouse! 😊’ ) who does a lot of reading and research on the subject, too. However, as he says, my case has been refractory. Maybe this will help at least get me off Mirapax completely.

CsiguZ profile image
CsiguZ

Regarding the antibiotic topic, you might experienced a Herxheimer reaction. In short this means that due to the bacterial die off in the beginning of the antibiotic treatment, symptoms caused by the bacterial infection can be worsening, which means the treatment is effective (and you should not stop the treatment). The temporary worsening happens because most of the pathogen bacteria (Helicobacter Pylori for example) has LPS in their cell wall, which is a toxic material for our bodies, thus in case these bacteria are killed by the antibiotic way more LPS toxins enters into your bloodstream.

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