Next steps for my Dad?

[ymf12]

My 90 year old Dad has had RLS since his 40s. It got much worse the older he got, with him often having no sleep at all. He was on Ropinirole for many years then it was clear he was augmenting so he was referred to a neurologist who prescribed the Neuro patch. He had cut the ropinirole dose down to 1 mg before he started the patch. After a couple of weeks he went down to half a tablet then none.

The patch seemed to work well for some time, he had the odd bad night and issues with skin rashes but now he is regularly back to daytime RLS and bad sleepless nights. His Ferritin levels are around 80 and he is taking iron.

As it seems to me he is augmenting again I was hoping his GP would refer him to a movement disorder consultant but no she prescribed Ropinirole to be taken with the patch. From what I have read on here from all you knowledgeable people this seems to me to be completely the wrong thing to do.

Getting to see a consultant could take months so just wondering what treatment would be best for him considering his age. He is a very healthy 90 year old who has some memory loss that is not being helped by lack of sleep. I’m going to go with him to his next GP visit so would like to go armed with some recommendation. Thanks in advance for any help.

[Dogdoo]

I'd print off some info by Dr Buchfurer or othe RLS specialists.

I believe you can search the site for those.

Seems you are right on the money regarding the medications.

Adding back ropinirole that he already augmented on while he is augmenting on the patch is probably not a good idea.

I switched from ropinerole to mirapex and the mirapex works wonderfully but i think my case is not the norm.

Your dad probably needs an opiate and/or gabapentin to help withdrawal from the DA's.

I wish you luck and hope your dad can get a referral to someone who knows what they are doing.

[Madlegs1 in reply to Dogdoo]

Absolutely agree with dogdoo.

Just google 'Mark Buchfuhrer and augmentation' and it will come up.

At his age, opiates are the obvious way to go. I'm 72, and on Oxycontin. Hopefully for the rest of my life . And, I actually have a life now.😆

[Joolsg]

Oh good god- another clueless doctor. Keeping your dad on any dopamine agonists is quite literally pouring petrol on a fire.

Your dad will need to reduce slowly ( and it will be really tough!) and the doctor will need to help him do so by prescribing opioids during withdrawal. As Madlegs advises, opioids will probably be the best option for your dad after he’s got through withdrawal.

Print off the articles on Augmentation and take to the doctor and hopefully you’ll be listened to. Sadly doctors have no idea how dangerous dopamine agonists are and how horrendous withdrawal can be.

I wish you both well.

[Kaarina Administrator]

sleepreviewmag.com/2015/02/...

rls-uk.org/augmentation-reb...

[involuntarydancer]

I totally agree with all the others.

It might also be worth getting his serum ferritin checked - and make sure you get the actual figure - not just that he is ‘normal’. If he is below 100 he should start a supplement. Raising iron can help rls symptoms a lot in many sufferers.

There is no doubt that memory function deteriorated with lack of sleep.

On the up side it returns quickly once sleep is regularised.

[slim1953]

I take oxycodone hydrochloride 7ml only when its it's bad at night. It works for me. I have had plmd and restless legs for 45 years. He needs to see a specialist asap

[TheDoDahMan]

Find an MD (e.g. Dr. B) who will prescribe 5mg. methadone twice per day. Those who have already been lucky enough to do so, know what I'm talking about.

[Graham3196]

What country are you in?

[ymf12]

Thanks so much for all the replies and confirming that adding back the ropinirole was not a good move. My dad is in South London so I'm hoping to get him referred to St Georges Tooting where they have a movement disorder clinic.

Have to say I am a little concerned about him taking opiates as he is not the best for taking medication correctly and I guess they could be dangerous if he was to take too many?

I'll let you know how things go with the next GP visit.