Creepy Crawlies

[PollyH59]

I am weening off the pramxi but I am experience extreme creepy crawlie feelings in my legs. More so than usual. Has anyone experienced this when weening off this drug? It's a terrible feeling, but I am putting up with it until I get this drug completely out of my system. Seems to be worse when I sit, and gets better when I get up and move around.

[Pippins2]

Hi well what you are describing is restless legs syndrome! Unfortunately when you start weaning off a Dopamine agonists like the Pramipexole it dies result in an increase in the severity of RLS. I was able to get down to half of my original dose of Pramipexole by myself but I needed a back up med to get off it completely. I see you are already taking iron and magnesium but you may need a strong painkiller too. The painkillers work on the creepy crawly urge to move sensations as well as on pain. Many find Codeine or Tramadol effective. Are youweaning down under your doctors supervision? How difficult it will be depends on many factors such as your dosage, how quickly you are wearing, how long you have been on it and individual response. Best to wean down slowly under your doctors care. Good luck

Pippins2 x

[PollyH59 in reply to Pippins2]

Pippins2 - I went to see my doctor about my RLS getting worse instead of better and he wants me to increase the dose of the Pramipexole I am currently taking ( 3 x .25) nightly. I don't want to increase the dosage so I am slowly taking myself off it all together. I am down to taking 1-1/2 pills at .25 now. I take myself down one half a tablet each week. So hopefully in another three weeks I will be off the prami completely. Last night was my second week of cutting back and today I am really noticing a difference in my RLS. I don't want to take these drugs anymore and if my doctor won't help me then I will do it myself. I know eventually things will get better, but it seems it will get worse before it gets better. Am I correct in assuming this?

[Madlegs1 in reply to PollyH59]

Yes- you are doing everything correctly - despite your doctor- who would have you in the horrors by increasing the dose.

If you can get Tramadol for a while- that would be good. Also Ambien sleeping pill for the odd night when you really need to geta nights sleep. Clonidine is also useful to help.

Rest plenty , take vit C and multi vits.

If you're inclined - cannabis oil or kratom can also help.

Take alook at Matt Finch site for opiate detox- some good strategies that I found helpful.

Good luck , and keep in touch.

Epsom salt baths help some people.

And you can check out iron - fer bisglycinate - search on this site.

[Pippins2 in reply to PollyH59]

Most people find getting off the last pill the hardest part. Well done for getting this far, it isn't easy x

[datsoon1 in reply to PollyH59]

hi there,remember doctors dont know everything,mine wont even accept rls as a bad condition!!

[Bkc1777]

Hi there,

Yes, it is very likely to be get worse before it is better. It is through hell but But you will get there! Stay strong.

I take iron bisglycinate only on a empty stomach before bed and it works for me but please get your ferritin levels checked before doing this.

We are all different so you might need some painkiller while weaning off (like Pippins said)

What helps me when rls is bad is bending my toes for 30 seconds, lying down on my knees for a bit, cold press, sex (:))...

I hope you get that evil prami out of your system very soon..

There is a light at the end of the tunnel, trust me!

You will feel like a different person!

Hang in there and help is in hand,

B.

[datsoon1]

hi there,your creepy crawlies sounds like what i called the Ants,cos it felt just like millions of them,it was when i was allergic to a drug, it was almost as bad as rls,

[gmf43]

My partner is on 8mg Ropinirole which the Dr increased from 6 mgs for creepy crawlies in legs and across his chest and down his arms. I was not happy with the increase (he is 80) and spends a lot of time asleep during the day, perhaps because of the Ropinirole, I don't know. ??? He now takes Vit B 12 slow release in the morning and Magnesium before bed plus a hot water bottle. It seems to be working. ? Is it the drug or Vit B and Mag making the difference or all 3.

[Joolsg]

Does your partner have Parkinsons? Only asking because that dose of ropinirole is double the highest dose for RLS and even 4mg is now regarded as too high for RLS. The fact he was getting creepy crawlies across his chest and down his arms screams AUGMENTATION and that means reducing ropinirole very slowly and getting off it with the help of an opioid. Most doctors do not know about augmentation which is why they increase the dose when symptoms of RLS get worse.This is a copy of Pippins2 recent post explaining all about augmentation. It's really useful:

"Lots of new members, welcome to the group!

Augmentation is something that comes up every day on RLS groups so to save me repeating myself over and over I am putting up this post for information

Augmentation is something that can happen when you are taking one of the Dopamine Agonists meds eg Mirapexin(Pramipexole, Mirapex, Sifrol ),Requip ( Ropinerole ) and Neupro patch.

Symptoms of augmentation are needing to up your dose of medication, it helps for a while then symptoms come back so you need to up the dose again

Symptoms start earlier in the day

Symptoms start after shorter periods of rest and relaxation

Symptoms spreading into other body parts most commonly the arms

Med not working so well at night

Basically your symptoms are worse than when you first started taking the Dopamine Agonists

The Neupro patch has the lowest rate of augmentation of all the Dopamine Agonists.

Due to the problem of augmentation the experts are now advising patients to keep the dose very low, no more than 2 mg daily for Requip ( Ropinerole ) or 2x 0.088mg of Mirapex ( Pramipexole ) and no higher than 3mg Neupro patch

If you think you have augmentation do not just stoptaking the medication. You need to wean off very slowly under doctors supervision and will most likely need a back up med to help as withdrawals can cause very severe RLS symptoms.

Unfortunately many doctors are not aware of augmentation and keep increasing the dose which is the exact opposite of what needs to happen.

It may be helpful to say where you live as there are very few RLS experts especially in the UK and another member may be able to recommend a good Neurologist.

This is for general information. Always seek medical advice. rls-uk.org has excellent information including information about augmentation and a section for Professionals. It may be helpful to print it off Pippins2 x"

Hope this sheds some light on the matter,

Jools

[gmf43]

Thankyou for your reply which is most useful. Yes, my partner was diagnosed with Parkinson's about 12mths ago and was given 2mg ropinirole. Every time he mentioned his restless legs the dosage was increased either by the Parkinson's nurse or GP. Apart from the RLS which is now under control as explained in my email he is very tired and feels very vague and lifeless. Could this be the side affects of Repinirole?

Regards

[nick-the-turk]

Did not have these feelings in legs but thought i was going mad and RLS did get extreme it is a horrible time and you can beat it and believe me how you will feel after coming off pramipexole is certainly worth the fight stay strong

[PollyH59 in reply to nick-the-turk]

Thanks for the encouragement Nick. Things did get worse for me before they got better, but each day is a new day and each day I feel better and better!

[NoMoRLS]

I had horrible spasms getting off prami. Take it slow. Lots of water...walks...ask your Dr for an Rx to relieve pain. Lots of good suggestions on this site.

Best to you

[PollyH59 in reply to NoMoRLS]

The spasms are horrible, but they seems to be getting a little better with each day that goes by. Last week I was going out of my mind trying to work and deal with the spasms. I had to keep getting up from my desk and stretching my legs or walking around for a bit. I am getting better though! Each day is a new day and a better day!

[NoMoRLS]

Glad to hear relief is coming more and more.