Augmentation with DAs in RLS but what about Parkinson's - A question I've pondered...

[restlessstoz]

Hi all RLS sufferers who like to ponder.... Auldreekie18's post raises an interesting question which I have pondered lately. If one suffers from RLS and has taken dopamine agonists in the past with augmentation setting in- then develop Parkinson's, I wonder what the treatment for Parkinson's will be when/if dopamine agonists are the primary treatment? (In fact I don't know if it's a primary treatment...or what other drugs are used.) Do people with Parkinson's augment on DAs or is it just RLS sufferers?

Any thoughts to keep the early morning- or late night brain active?

[Guitarpickin]

I don’t know the answer to your question. But I do review medical evidence all day and for the past two years I’ve been assigned to review Parkinsonism and Parkinson’s disease. In that time I have never seen a doctor refer to augmentation for any of the patients. I also haven’t heard of any of them having the impulse disorder side effects we all think about. I don’t know if it is because it isn’t happening with the patients or just not discussed at all.

[restlessstoz in reply to Guitarpickin]

So then, if (hypothetically) I've augmented on DAs due to my RLS I can't be treated with DAs for my Parkinson's because it will have an impact on my RLS! What else is available for Parkinson's?

[restlessstoz in reply to Guitarpickin]

I just Googled Impulse control Parkinson's Dopamine and it came up with a whole list of papers which talk about it so perhaps it's just we haven't heard about it with regard to Parkinson's before?

[Guitarpickin in reply to restlessstoz]

oh, no. Really? I’m sorry to learn that. Maybe it’s never talked about in the records I’m reviewing because the other problems take precedence. Thanks for letting me know.

[wendersgame]

I was literally only just reading about this - augmentation apparently only happens with RLS - it doesn't happen with parkinsons

[restlessstoz in reply to wendersgame]

Thank you Wendy. Now I can put my mind to rest! Until I start to question 'Why?'

[Munroist in reply to restlessstoz]

A thought which is based solely on my non-medical experience and limited understanding of the two conditions. Most people with RLS generate enough dopamine during the day, and it seems to be the overnight circadian, fall in dopamine levels that triggers the restless legs, although as soon as you move, or do other things to stimulate dopamine, it normally improves. That means that in the day you are over receptive to dopamine which may be why you get the RLS. Parkinson’s, however, is a much more serious loss of dopamine 24 hours a day so the DAs are always struggling to bring dopamine back up to normal levels. I have two relatives with Parkinson’s, and they both experienced the same problem with the medications, namely that it’s very difficult to provide precisely the right amount of dopamine because that varies according to peoples’ activity minute by minute, but essentially, when they take medications, they have slightly too much initially which causes large involuntary movements and shaking, and then, eventually, when the drugs start to wear off they experience, loss of mobility, stiffness, and sometimes immobilisation if they get caught out, which is where the drugs are not providing enough dopamine. The periods of shaking and excessive movement seem very similar to RLS augmentation. Basically I’m saying that the dopamine levels in Parkinson’s are so low that it’s quite hard for drugs to raise them to the level where augmentation will be experienced. Possibly.

[restlessstoz in reply to Munroist]

That sounds a good description of the problem and why they don't augment Munroist. I'm particularly interested at present because my oldest and dearest friend has just been diagnosed with Parkinson's. It's set my mind thinking about things. Following your theory then, if with Parkinson's means there's very little dopamine at all, then RLS would be hugely bad but because there isn't even enough dopamine to stimulate enough to augment, so it would be safe to be on DA's???

[Munroist in reply to restlessstoz]

Again, a massive caveat that I am not in any way medically qualified. I can’t explain why a small drop in dopamine (I assume it’s small?) caused by circadian rhythms, should cause restless, legs and involuntary movements, while a much more severe loss of dopamine causes almost the opposite. There may be other compounding factors for RLS such as low iron levels or neuropathy, which cause the specific RLS movements. However I’m not aware that either of my relatives with Parkinson's had the RLS problem with sleep issues.

[restlessstoz in reply to Munroist]

It's all very interesting isn't it! Low ferritin seems to be a factor for some as back injury and neuropathy for others with RLS... diet alone seems to help some... So many questions and not enough answers. Still, I am very thankful to have found a solution for the time being at least and now have the energy to think of different questions other than 'how do I survive'! I will be interested to see if any others reply to the post and if so what ideas they have! Thanks for your interest.

[restlessstoz in reply to wendersgame]

So then, if I've augmented on DAs due to my RLS I can't be treated with DAs for my Parkinson's because it will have an impact on my RLS! What else is available for Parkinson's?

[wendersgame]

I know I wonder the same myself I'll see can I find the info on it.

Here it is - see under the medication info here - it mentions augmentation in RLS but not parkinsons symptoms

parkinsons.org.uk/informati...

[restlessstoz in reply to wendersgame]

That's interesting... I wonder if anyone knows why? and what can one use for Parkinson's that aren't DAs when one has augmented on DAs and and RLS as well?

[Magenta53]

Hi, I’m new to this forum and am finding it very helpful. I have had bad RLS for years and am currently in the process of getting off of ropinerole because of augmentation. The neurologist has started me on Gabapentin in the meantime. It is a miserable process. But to answer your question, my husband was diagnosed with Parkinson’s 3 years ago. His neurologist put him on Carbadopa/Levodopa, which is not a DA, but gets the dopamine straight into the brain I think. The neurologist has adjusted his dosage a few times. He doesn’t have any noticeable side effects, other than the Parkinson’s itself. He didn’t have RLS to begin with, so I don’t know how the meds would have affected that.

[restlessstoz in reply to Magenta53]

That's interesting Magenta53. Thank you for your response. Levodopa was the first drug my doctor put me on for RL but I can't even remember now how long I was on it for. My friend who has recently been diagnosed with Parkinson's is now on it with wonderful results.

I know how awful it is to get off DAs so you have my full sympathy. I did the same (only off pramipexole) three years ago and it was a dreadful experience. I hope the gabapentin does the job once your free of the DA.

[Anne_liz]

A friend of mine was recently diagnosed with Parkinson’s and soon after this she developed rls as well. She had never had this before, but apparently it can happen with Parkinson’s. She has now been prescribed gabapentin and it seems to be working well for her.

[restlessstoz in reply to Anne_liz]

Thank you. I will make sure if my friend gets it, she get's the best advice.

[SueRytt]

something I’ve wondered for a long time is whether there is a link between RLS and Parkinson’s.

[restlessstoz in reply to SueRytt]

As far as I understand it, if you have RLS, it doesn't make you any more likely to get Parkinson's but if you already have Parkinson's it can be more likely you'll get RLS. Good news for 'us' but not for 'them'.