Ropinerole and joint weakness from withdrawal?

[Newmomma567]

I realize this is probably an odd question, but I am trying to titrate off of ropinerole because it is affecting my milk supply as a new mom, and the medication has always made me feel like I had the flu about 20 mins after I take it. I was to find an alternative, but in the meantime, am trying to mitigate the effects.

I have noticed that my knees feel... weird. Like the are very unstable, and could give out at any time.

I would chalk this up to a weird postpartum issue, except it only started in the last few days- the same time I started to lower my dose of ropinerole, and added in gabapentin (to ease the nerve pain from titration). I gave birth four weeks ago, and I would just assume it would have surfaced before now if it was a postpartum issue.

It’s unnerving, as I dont want to feel unstable while I’m carrying around a new baby, and trying to climb/descend stairs on a regular basis. Thoughts?

[Hidden]

It's the gabapentin! A known side effect.

I'm not sure what you mean by "nerve pain from the titration" reducing ropinirole doesn't cause nerve pain.

Gabapentin however does help relieve RLS symptoms. It won't work too well at this whilst you may be suffering withdrawal symptoms from reducing the ropinirole, but it can be used to replace ropinirole.

It does take about 4 weeks for gabapentin to start working during which you may have side effects which hopefully will fade.

What you describe is one of those side effects. It may wear off then, but there is a possibility it won't.

[Newmomma567 in reply to Hidden]

Interesting. I was prescribed the gabapentin to ease the withdrawal from ropinerole, because in itself, it does nothing for my RLS.

But now you have raised an interesting question for me... I always assumed gabapentin never worked for me because it didn’t work RIGHT AWAY. It takes several weeks of taking it to see benefits for RLS?

[Newmomma567 in reply to Hidden]

I should mention too... (and you were very helpful previously in another post I where I asked about RLS and breastfeeding) that i had no idea I couldn’t just stop taking ropinerole “cold turkey.” I was in *a lot* oh physical pain in my joints, and my TLS symptoms skyrocketed so that I couldn’t even sit still to give my son a bottle to feed. It was only because of this site that I discovered I had to titrate down, and when I told my doctor she agreed. Told me to take the gabapentin to help with withdrawal symptoms (including pain, I assume?) and so far it has mostly worked. I just assumed that the one pain I was feeling was nerve pain? Because, isn’t that what gabapentin is usually prescribed for?

This whole situation has me angry and absolutely floored that no doctors seem to know anything about anything. I am praying that the neurologist I see in a few weeks can help me more because this is ridiculous.

[Hidden in reply to Newmomma567]

I don't know what exactly your Dr has told you but gabapentin is used "off label" for treating RLS. Prescribing it then doesn't mean you have nerve pain.

In fact it's one of the two meds now recommended as the first treatment for RLS NOT ropinirole.

"Off label" means it isn't licensed for RLS, but it is licensed for epilepsy and nerve pain.

However, although it might be a "replacement" for ropinirole, i.e. when you've stopped taking ropinirole entirely, it may not be effective for reducing withdrawal effects.

It may not work for up to 4 weeks and additionally the dose has to be high enough to be effective. I often see people taking 300mg for only week or so then saying it doesn't work. You may need 900mg or more.

Pain is not a normal withdrawal effect from the ropinirole. Furthermore the pain you describe doedn't sound like nerve pain.

The usual withdrawal effects from ropinirole are a worsening of your RLS symptoms and sleeplessness.

If withdrawals are severe then the best med for this is an opiate, e.g. codeine or tramadol. If your Dr won't prescribe one of these, then cocodamol may help, but it wouldn't be a good idea to take this regularly or for any length of time.

[Joolsg in reply to Newmomma567]

Ropinirole should be reduced very, very slowly over a MINIMUM of 3 months. The withdrawal can be horrendous with constant RLS and little or no sleep. As you're a new mum, please reduce very slowly and ensure you have help for the 10-14 days after you drop the last dose as it can be hellish. You may need opioids to deal with the withdrawal and if you're still breastfeeding check whether these drugs cross into the milk.

The gabapentin won't stop the withdrawal symptoms and so won't be fully effective until you're off Ropinirole.

It took me about 6months after withdrawal to find the right combination of meds and, as you're discovering, doctors and neurologists know very little about the condition or the drugs used to treat it.