levodopa and augmentation

[Covenant1962]

I have had RLS for over 10 years and controlling symptoms with oxycodone. I have also been diagnosed with Parkinson’s disease and prescribed Levodopa. Can someone please confirm whether or not this is a dopamine agonist like Pramipexole. If so does it also lead to augmentation?

[Madlegs1]

As far as I know --For some reason the dopamine meds at the rates given for Parkinson's don't cause augmentation.

[Covenant1962 in reply to Madlegs1]

Many thanks Madlegs

[SueJohnson]

It is not a dopamine agonist but acts like one but as Maglegs1 says people with both RLS and Parkinson's do not typically develop augmentation.

Gabapentin which helps RLS is used in Parkinson's to improves rigidity, bradykinesia, and tremor.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Covenant1962 in reply to SueJohnson]

Many thanks Sue

[Joolsg]

apdaparkinson.org/what-is-p...

I actually have to disagree with others. Levodopa can cause augmentation if you have both RLS and Parkinson's.

I spoke to the Parkinson's neurological team at Bart's several months ago and they said they are moving away from prescribing dopaminergic drugs for PD because of ICD and other complications.

I suggest you talk in detail to your PD team and ask for other options and how they will treat augmentation of RLS.

[Madlegs1 in reply to Joolsg]

Good to get that update!👍💚

[Covenant1962 in reply to Joolsg]

Thanks Jools will do

[Covenant1962 in reply to Joolsg]

Jools do you think I should come off the levodopa anyway regardless of what the PD team say?

[Joolsg in reply to Covenant1962]

No. Because you need to control your PD. However, there are other medications that are now used.I can't remember what Professor Alistair Noyce at Bart's said they now use. But Bart's, London are moving away from dopaminergic drugs.

I would call your PD nurse/team and ask for a Face to face appointment to discuss your concerns about Levodopa and the fact you have RLS as well as PD.

Ask them to discuss alternative meds and your concerns about augmentation and Impulse Control Disorder.

Hopefully they will switch you to another med.

If not, ask how they will treat augmentation and prevent any withdrawal symptoms.

[BTABKWJ4561]

l have been taking praprexole for about three years and generally it has been good

[Joolsg in reply to BTABKWJ4561]

That's not true. You have said you had to get off Ropinirole 6mg and are now expecting RLS at 6pm on 5 x 0.088 Pramipexole pills.This will just get worse.

You need to follow the advice we gave you over 2 years ago.

Until you do, the RLS will keep increasing in severity, start to affect you all day and move to your hands, arms and back.

Have you experienced overspending, gambling or addictive behaviour?

Has your GP reviewed you and carried out full panel fasting blood tests for serum ferritin and serum iron etc? Has your GP warned you about drug induced worsening or Impulse Control Disorder?

Please follow our advice or you will be too old and frail to get through withdrawal safely.

Withdrawal is really difficult and needs to be done with the help of a good, knowledgeable doctor who can prescribe low dose opioids to settle severe withdrawals and who can prescribe replacement meds.

[BTABKWJ4561]

I’ve been using praprexale for about three years no problems

[SueJohnson in reply to BTABKWJ4561]

You were previously on 6 mg of ropinirole which is one and a half times the maximum dose and are now on 5 tablets of pramipexole which is 1 and 1/4 times the maximum dose. You are suffering from augmentation and were told this back then. As you well know they are no longer the first line treatment for RLS and you really should get off it as it will only get worse.

[ChickenTwisty in reply to BTABKWJ4561]

Ignore Sue's advice (and evidence based consensus) at your own risk. As previously pisted after 10 years graduating to 1mg my symptoms had gone from in legs one evening every couple of months to near 24/7 in arms and so very close to suicide.

[Joolsg in reply to BTABKWJ4561]

It has already caused augmentation again.

You have been treated poorly and negligently. Any doctor who allowed you to take 6 mg Ropinirole and then switched you to high dose Pramipexole does not know the basics of RLS treatment and should be sued.

Doctors should stop rotating and switching patients between dopamine agonists. It doesn't solve the problem. It just delays the inevitable.

And the longer you've been on these drugs, the higher the risk of Impulse Control Disorder and permanent damage to dopamine receptors.

It's the reason the American Academy of Sleep has now relegated these drugs to 'end of life scenarios'.

Please look through Andy Berkowski website, listen to his webcasts and do your research.

And please follow the advice on here. Denial and fear is strong. But getting off these dangerous drugs is possible.

But the RLS will continue to get worse and you won't be able to sit still in the day.