Just back from docs pain

[beady3]

Hi folks just back from the doctors , I do like him and we can talk, I have gone on to 1mg patch and 50mg Simmemet he said to come of patch steady but take simmemet with it , I have got to ring him in a month ,he said not to come of Tramodol yet as I would get in a mess with what works ,I hope I have some success

[Pam34]

Hi Beady

I’m sure someone will correct me if I’m wrong but I didn’t think they prescribed sinemet for RLS anymore? Isn’t the risk of augmentation much higher?

Pam

[beady3 in reply to Pam34]

Well Pam that’s all I need

[Pam34 in reply to beady3]

I know, I’m sorry. I may be wrong, let’s see what the others say.

Don’t lose heart yet!

[Yakester in reply to Pam34]

I thought sinemet was a DA and therefore not a good thing to be on.

[Pam34 in reply to Yakester]

You are right. If you read the rest of the thread you will see Beady was advised against it.

[camperqueen]

So glad you feel you are getting somewhere. It’s nice you can talk to your doctor and he takes the time. Hope it all works out.

[beady3 in reply to camperqueen]

Thanks for reply just been told they are the worst thing as I have already had augmentation x

[Pam34 in reply to beady3]

Hi beady

I was hoping someone else more knowledgeable than me would jump in - maybe they still will.

I gather you are on the patch at the moment and believe you are augmenting in which case sinemet is not what you need.

What else have you tried?

Pam

[martino]

Interestingly it was suggested to me a couple of years ago that if I couldn’t manage Neupro I should go on to Levedopa. I haven’t got there yet as the patch is ok. I have read that Levadopa is used with other drugs on a rotation basis to prevent augmentation starting. I am glad that the doc listens and appears to know about RLS!

[Sunflowergirlem in reply to martino]

I have been talking levadopa for four years. I have to take it around 7:30 pm or my legs start. Works well. But now I'm getting rls during the day. Especially if I'm sitting in the car more than hour. I have sciatica as well. Sometimes I think that triggers my rls.

[Pippins2 in reply to Sunflowergirlem]

It's augmentation from the Levodopa causing your symptoms to start earlier in the day. Lots of posts about it on here. Put augmentation into search

[Joolsg]

Hi Beady,

You received excellent advice from Nightdancer a few months back. She seemed to think you were not augmenting but had become tolerant to the patch and to consider a drug holiday to reset your receptors.

I agree with Pam. Sinemet is an older dopamine- L- dopa and is not favoured by experts as it’s the drug that leads to Augmentation most quickly.Get an alternative.

If you are not in Augmentation but have become tolerant to the patch, then some doctors do switch dopamine agonists . According to Dr Buchfuhrer, “it is not rare for some patients to rotate two doamine agonists every few months as they become less active “.

This is drug rotation as opposed to the drug holiday suggested by nightdancer.

I therefore think, as long as you are not in Augmentation, but have just become tolerant to the patch, you could rotate to another DA for a few months. However, I agree with Pam. Sinemet is not a good choice. Speak to your doctor again and discuss a newer DA like Ropinirole or pramipexole but at the lowest possible dose for relief and do not increase the dose if it stops working.

Obviously you have to look out for Augmentation. That is a worsening of the symptoms, starting earlier in the evening/ day and moving to other body parts.

If you are still on tramadol and pregabalin, keep taking them for now as they may cover the withdrawal from the patch until the alternative DA becomes effective.

Rotation is possible but do watch out for Augmentation.

I hope it works and helps.

Jools

[rls_optimist in reply to Joolsg]

Hi, Beady, Jools' information is spot on, and I second everything she says. If you are considering rotating to another DA, I just want to emphasize her recommendation to stear clear of Sinemet. As Jools says, "get an alternative". That would be ropinerole or pramipexole. The latter may be the better bet: one study comparing these showed that fewer subjects dropped out due to augmentation, when taking pramipexole. Sinemet is said to have an augmentation rate as high as 70-80% if taken regularly. It can be kept in reserve and used as a "rescue" drug on occasion when symptoms break through your regular meds, as it is faster acting. But the RLS experts say not to take it more than once or twice a week. So be careful if you do this. Good luck!

[beady3]

What lovely advice thank you so much , that’s what I think I needed a break from the patch then start again xx

[Hidden]

Hi Beady,

Feels difficult for you. Have you tried adding Turmeric? I use Nature's Garden 400 mg Turmeric available from Holland & Barrett and it is greatly enhancing the Neupropatch and helping my RLS. I also take Magnesium and B12. Good luck.

[Pam34 in reply to Hidden]

Hi Beady

Seems sound advice from Jools as you would expect! Thanks for jumping in Jools!

Pam

[beady3]

Thank you all for your kind emails and I am taking your advice but I feel in such a mess I feel low , well tomorrow’s another day and I know I will feel betterxx

[Pam34 in reply to beady3]

Hi Beady

At least you have a plan of action now so take strength from that.

Have you been able to make an appt with your doctor?

You’ll feel better once you have got things in place. Let us know how you get on.

Pam

[beady3 in reply to Pam34]

Thank you Pam yes I can speak to doc next Wed so I will have got myself together ,will let you know xx

[Pam34 in reply to beady3]

Beady, if it makes it easier take a copy of Jools and RLS optimist’s emails to the doctor so it’s all clear in case you forget. I know I do if I don’t make notes!!!

Pam

[beady3 in reply to Pam34]

Pam it is a phone chat also he was quite shirty when I mentioned this site , I will be ok thanks I will have it in writing in front of me

[Pam34 in reply to beady3]

Ha - they hate to think we may know more than them! Be firm 😊

[martino]

In my limited experience some docs don’t like us being informed by anything or anyone but them. That is, of course, a bit odd. We are all dealing with something very life affecting and it seems very reasonable that we will want to know as much as possible. The neurologist I see was quite dismissive about sites like this so quite how to mention perhaps a new DA or other med change has to be handled carefully. I hope the chat goes well!