Meds and rls

[BenAZ]

Was on pramipexole for over 15 years was up to 3mg. Have slowly tapered off of it and switched to a lower dose of requip hopefully don't have to deal with as many side effects mostly hypersexuality. My rls symptoms seem to be starting earlier in the day by 3 in the afternoon. Is it worth it to start gabapentin? Or possibly taking requip earlier? Has anyone had hypersexuality with requip? My Dr seems to think requip didn't have the same side effects as mirapex.

[Lapsedrunner]

Hi,

Requip aka Ropinerole is in the same group of drugs (dopamine agonist/ DA) as pramipexole, it therefore is highly likely to give you the same side effects as far as I’m aware.

Hypersexuality is an aspect of “impulse control disorders” linked with DAs (can also manifest as compulsive gambling/shopping/eating etc)

Those things didn’t happen to me but augmentation did (symptoms increased, occurred earlier and in other body areas) Sounds like this may be happening to you too.

Overall I would say you need to get off all DAs and get onto a helpful dose of gabapentin.

There are some useful links to be found on this site regarding first line treatments and augmentation that would be worth tactfully bringing to your doctor’s attention.

Getting your iron/ferritin levels tested would also be worth doing (there’s a pinned post regarding iron on this site too, have a look)

All the best 😊

[BenAZ in reply to Lapsedrunner]

Are you able to manage your rls with just the gabapentin?

[Elffindoe]

Hello, Lapsedrunner is correct.

You have two problems.

Your main problem is that after taking pramipexole for 15 years it's almost 100% certain you would be suffering augnmentation as well as an Impulse Control Disorder (ICD) i.e. your hypersexuality. Augmentation is greatly more common than ICD.

In addition, augmentation can takes years to develop, but ICD usually develops quite quickly.

The treatment for both is largely the same. This includes withdrawing ANY dopamine agonist (DA) because it is the DA s that casue these two.. Since ropinirole is also a DA simply switching from pramipexole to ropinriole in the long term isn't the best plan.

Your second problem which may not be so obvious to you, I'm afraid is that whoever prescribed you these drugs appears to be virtually clueless about how to manage RLS.

I won't dwell on that, but if you seek further assistance from this same doctor or doctors it appears that you can't rely on them to effectively manage your situation.

I'm sorry, all I can do is tell you what the recommended measures for managing your current situation are and you take it from there.

Firstly, I should WARN you about DAWS (Dopamine Agonist Withdrawal Syndrome).

Normally, for anybody withdrawing from a DA, every time the dose is reduced they can experience quite severe withdrawal effects. The greater the reduction the more severe these will be The usual way to manage this is to make gradual small reductions.

Withdrawal effects often fade after about two weeks.

However, unfortunately some people experience DAWS, this comprises of more severe withdrawal effects plus mental health problems and can last for months or even over a year. Some people are unable to withdraw from a DA at all because of this.

It's not easy to preedict who will suffer DAWS and who won't, but it is known that it is mainly people who have an ICD that suffer DAWS.

You will therefore need to be very, very careful weanbing off the ropinirole.

How to manage RLS/Augmentation/ICD

First : Iron therapy -since iron deficiency is the main cause of RLS this shouod be the first treatment considered, in ANY case.

Doctors often neglect this, or misinterpret blood test results. The recommednations for people with RLS are :-

1) IF serum FERRITIN is less than 75 (and all other results are normal) then start on an oral

iron supplment.

2) If serum ferritin is between 76 and 100 then seek an IV iron infusion.

Second : identify and if possible eliminate any aggravating factors i.e. things that can make your RLS worse.

Common everyday triggers for RLS are akcohol,m sugar, nicotine, caffein and other stimlants.

The two other main aggravating factors are

a) Other medications

b) Diet, inflammation and gut health.

You can read more about these in other posts or in the pinned posts on this site.

Possibly useful supplements include magnesium, vitamin B12/folate, vitamin D, probiotics or a strong anti-oxidant e.g, selenium or celery juice.

Third : as previously stated wean off the DA. Some people fiond thatr a low potency opioid or a benzodiazepine helps reeduce with drawal effects.

The recommended replacement for this is an aplha 2 delta ligand either gabapentin, pregabalin or gabapentin enacarbil (in order of effectiveness, but also cost).

It is advisable to start taking the ligand before stopping the DA.

Unfortunately, once somebody has suffered augmentation from taking a DA, especially for years, then it is possible that the ligands will not work. You will only be able to tell oince withdrawal effects have worn off.

This is why the ligands are now recommended for the FIRST treatment of RLS, not the DAs. This wasn't known 15 years ago.

If the ligand doesn't work on itsown then the next opiton is either

a) a combination of any of a ligand, a DA, a low potency opiod or a benzodiazepine

OR

b) a low dose of a high potency opiod i.e either oxycodone, methadone or buprenorphine.

Note I have taken this information from several authoritative and official sources. The main one is this -

mayoclinicproceedings.org/a...

I'm afraid that your ICD may fade as you withdraw from the DA, but it may not disappear entirely.

If you need more information please don't hesitate to ask.

[BenAZ in reply to Elffindoe]

Thank you for all the info. I really appreciate it.

[Sillylily]

Hi BenAZ,

I had ICD from Mirapex - gambling/spending money. Also had DAWS. Nearly lost my life. But am a totally different person off of the DA. Please listen to the advice you have been given. Do you have access to an RLS specialist? Most doctors I saw only made things worse for me until I finally found a true RLS specialist. Hold on. Things will get better.

[Graffamj in reply to Sillylily]

I’m so sorry to hear about this, Sillylily. I was there too. 9 years ago my requip dosage was jacked up from 4mg to 9mg, over the course of 3 months. I then went on an 18 months gambling and thievery binge. When a wise doc realized the issue and got me off DAs, neither of us knew about the withdrawal. I’m still shocked I didn’t kill myself because DAWS definitely can and does include SI. So yeah, please consume people’s stories and consult a trusted physician. If you’re feeling augmentation and ICDs right now, it will only get worse.

[Suhavard]

Effindoe and the others have all said it best. Good luck to you.

[Josana13]

Hello, YOU said u tapered off of pramipexole. How did u do it, and how long have u been taking Prami

[BenAZ in reply to Josana13]

I was on pramipexole for about 15 years. Was on 3 mg. I just started by cutting my pill in smaller doses. I probably did it faster than I should have. Unfortunately my Dr switched me to requip so I will eventually taper off of that as well.