Re : Dopamine agonists .. help .. plz ! 😱

[Svengolly]

Hi fellow rls sufferers .. Very desperate at this point …

I tried Ropinirole (Requip) for my pretty bad rls ..

Kind’a masked rls .. but had horrible side effect .. head , stomach , + next 2 days.. wretched .. sick to stomach :((( ..

Has anyone had similar .. or bad reaction … but switched to Dopamine agonist of NONE - ERGOLINE class ie ..

Pramipexole (Mirapex, Mirapexin, Sifrol) and then had good result ??

Btw .. gabapentin & levodadopa kinda work for me but still can’t sleep :((

Also gabapentin only last a couple of hours for me :((

[Joolsg]

What drugs are you taking at the moment? Gabapentin AND Levodopa? What doses and what time? How long have you been taking them?

Did your doctor give you Ropinirole at the same time as Levodopa?

Nausea and stomach pain are listed as side effects of Ropinirole.

[Svengolly in reply to Joolsg]

Hi Jool,

When i tried the Ropinirole ... i was not taking anything else .

I 've used Gabapentin and Levodopa seperately with some success . ... but not so much now.

That is why i am wondering if anyone has had a bad reaction to one Dopamine agonist but a happier meeting with another .. as i would then maybe try such .

[Joolsg in reply to Svengolly]

Ok. So you are not on any meds at all for RLS at the moment.

I would suggest trying pregabalin (Lyrica) as it is better absorbed than gabapentin and would last longer ( I take it an hour before sleep).

Also get your bloods taken and ensure serum ferritin is above 100.

Avoid anti histamines and anti depressants as they make RLS worse.

I can’t personally recommend another DA as I augmented on ropinirole and will never touch another DA.

Hope you find something that helps.

[Svengolly in reply to Joolsg]

Thx .. I’ve tried lyrica 75 ..the only problem is .. it did not fully receive all my rls . I would like to take a 2nd pill .. but they seem to advise waiting a week .. that’s a lot of sleepless nites 🙀

[Pam34 in reply to Svengolly]

I’m also on Pregabalin (lyrica) and was prescribed 50mg the first night, 100 the second and then 150 three days later. You have to give it a chance to build up in your system.

So far this is working for me. Others find it works better supplemented with a low dose of an opioid.

Pam

[Svengolly in reply to Joolsg]

Re iron .. yes it was very low .. been taking supplements ,salmon, etc .. retesting tomorrow..

[DicCarlson in reply to Svengolly]

Get your iron levels up - it could be a dramatic game changer. 25% of RLS suffers respond to iron supplementation. Ferrous bisglycinate chelate - available as oral or transdermal delivery (PatchMD), readily crosses the blood/brain barrier.

[Svengolly in reply to DicCarlson]

Thx ! .. just ordered !

Btw .. last time i had rls .. i raised my iron levels .. .took 6 months but eliminated rls

The list of supplements i took -

Iron

Vitamin D

Vitamin E

Magnesium

[Joolsg in reply to Svengolly]

DicCarlson and Pam have given you excellent advice.

As Diccarlson advises, take ferrous bisglycinate ( both oral pill and transdermal patch from PatchMD in US) EVERY OTHER NIGHT. My levels went up from 65 to 204 over a 2 year period doing this.

Also, as Pam advises- wait for the Lyrica to work. There are no quick fixes you have to be patient and give drugs the time to work. Add 25mg of Lyrica every 3/4 days to build up to 150 mg. If that doesn’t settle RLS after 3 weeks then ask GP for 5mg of OxyContin to be taken twice a day.

The two drugs should work very well together. Avoid magnesium 2/3 hours before or after Lyrica as they interact.

Stay patient and stick with Lyrica.

Good luck

Jools

[restless1973]

Hi there. I too had really bad side effects whilst on ropinorole and pregabalin. I was then put on the neupro patch, and zapain painkillers, and it's a lot better. Still have the odd bad night. But very little in the line of side effects.

[Svengolly in reply to restless1973]

Thx ! .. very good too know . Was your adverse reaction to ropinerole just in the stomach ... or head as well ..like mine was ? Did just feel wretched in the stomach only when on it .. or even for a day or two after like I did ?

[jk3842]

Sorry but dropped my phone. Horizant 600 mg is a gabitention time release. For gapitention to work it has to be time release.

Also take Hydrocodone 10 along with pramopixole .125 mg x 3 a night. Sometimes even this combination will not totally work so will use cannibals (MJ) and smoke it. You don't need much MJ when combined with everything else.

Sleep best I have slept ever. Don't know how long this combination will work but I am riding this horse as far as it will take me. I am 78 and had RLS all my life and was sick of dealing with it. This combination works for me. Good luck.

Your timing of your meds is important. Take Hydrocodone and Horizant early about 5 pm, 7pm start with pramopixole. .125mg, and .125 @ 9pm and 11pm. If still having RLS smoke MJ.

I have about as bad of case of RLS and this works.

[Milefulano]

Get off all that garbage. A 5mg methadone, 50 mg trazodone combination will save your life. Believe me!

[restless1973]

The side effects I experienced were bloating and extreme tiredness. I would fall asleep anywhere and in any position. To the point were my quality of life was nothing.

[Svengolly]

Thx again for sharing .. glad your doing better now

[Mollymum]

I have had the same problems with requip after taking it for a week. I have gone back to taking pamiprexole which does not seem to have any side effects