Rls is back.

[Katerina22]

Hi everybody!I havent posted for a long time.I am on neupro 1mg and had almost no rls for about 10 months. Suddenly 2 weeks ago i started having bad rls every night. Whats this?Augmentation?or just an outbreak of rls?

Thank you all!!!

[Joolsg]

Hi Katerina,

It’s great to hear from you again but not great to hear about the neupro patch no longer working.

As you augmented before on a dopamine agonist it is more likely you will augment on the Neupro patch.

You will recognise the symptoms.

I remember you couldn’t find a combination of meds that helped but you may have to go back to your doctors/ neurologists and discuss withdrawing from Neupro and starting alternatives.

Is it still difficult to get opioids in Greece? I hope you manage to find something else that will help.

Take care

Jools

[Katerina22 in reply to Joolsg]

But can i augment in a night?No rls before that night!

[Katerina22 in reply to Joolsg]

I went from 0% rls to full rls in a night!

[Shaft1952]

Sounds like you are augmenting, but what does patch were you on? Hope you get sorted soon.

[Katerina22 in reply to Shaft1952]

Could you explain please what you mean when you say "what does patch were you on"?

[Shaft1952 in reply to Katerina22]

It should have said dose ie, the mgs of the patch, sorry predicted text is awful.

[Katerina22 in reply to Shaft1952]

Just 1mg of neupro patch.And it worked very well.Rls started suddenly.

[Shaft1952 in reply to Katerina22]

I think you need to check with GP but you could go up & see if it helps, hope it does.

[Hidden]

Katerina, if you have gone through, what you might had taken like a OTC med that you started or a different med from your doctor for anything else you have going on health wise recently, any food or drink that might have been a trigger to set your RLS off etc etc. then it does sound like augmentation, and as Jools said you should know what that feels like symptom wise, your RLS feels worse than it was etc. When you see your doctor dont let them prescribe any more dopamine meds. You will need to try a different class of meds. Hope you get sorted soon, so you can sleep again.

[Katerina22 in reply to Hidden]

Exactly 2 days after hearing a bad new which really shocked me, my rls turned up and it hasnt stopped although i found out after 5 days that the bad new wasnt true.

[Joolsg in reply to Katerina22]

Stress is a major trigger for RLS. Maybe try yoga & deep breathing. Fear of RLS happening can also bring it on.

I hope it passes soon.

[Hidden in reply to Katerina22]

Then that could have been your trigger, as Jools said stress can be a trigger. Hope it passes soon.

[involuntarydancer]

I would hold tight for now as the stress could well be the reason. Or maybe - as you aren't sleeping anyway - cut the patch in half for a few days and then go back to the full patch. This may trick your body into feeling it is getting enough dopamine again. It might be even better if you cut in half for maybe 6 days, eliminate altogether even for about 4 days then reintroduce. But I do appreciate that would be HARD. Are you sure you are getting enough iron? I forget what your serum ferritin was like.

[SleeplessinOhio]

Hi Katerina22 I'm really sorry you are having a setback and I think that those are all very good comments. I think the summation of them all is that you should try to get off of dopamine agonists by getting something else from your doctor. If your doctor isn't one of the physician members of the RSL Foundation then take info about how he/she can join and get educate: take a copy of the Medical Bulletin for Healthcare Professionals, and maybe also a copy of the algorithm for how to treat RLS and Augmentation (it is one of the slides in Dr. Buchfuhrer's notes from the Augmentation webinar). But I do have this to add to the prior suggestions - things I found out about Neupro during the six months or so that I was on it. There is a big difference in how it's absorbed depending upon where on your body you put the patch. You need to move it often around your body so that the rash/itch is kept to a minimum but it seemed (to me) to get best absorbed when I put the patch on my shoulder or upper arm. If it's not sticking well then it's not delivering the dose you are expecting - try rubbing the application site beforehand with Smith & Nephew Skin-Prep Protective Dressing Wipes - they are cheap and I got them through Amazon. If the Neupro lifts anyway try putting a protective patch on top - I used Transparent Adhesive Dressing Waterproof 4x4s by Areza Medical - also cheap through Amazon. (What did we do before Amazon?). But you may have run into a bad batch of patches. They have a very small temperature range that they need to be kept in - 68-77 degrees F. If too cold (refrigerator is too cold) or too hot (mine once sat on my porch for a couple hot summer days when I had mail delivery...) the adhesive loosens. But please hear this. The maximum dose to accept is 3mg. I had a doctor that ignored that entirely and had me go far above. That leads to a whole new (unacceptable) set of side effects.

[Katerina22 in reply to SleeplessinOhio]

Thank you so much!

[SleeplessinOhio]

glad to help

[Bat3353]

Don’t do it I got up to 5mg on neutro and was hooked god forbid you forget it it will defiantly remind you with a bad rls I managed to switch to ropinorole which is also a bad medication because the meds contain dopamines now my specialist that I located from the rls foundation is lowering the dose until I’m off the dopamine the switch to a different drug that’s not addicting don’t make the mistake I did thanks to this site I’m now on the right track

[btthemd]

WHO KNOWS? Could be both...RLS is known to wax and wayne. This is all part of RLS....I have been using Tramadol HCL for over 20 years....It works most of the time but then all of a sudden stops working then starts to work again. Crazy sickness....need to work with health care provider to try different meds, when one stops working try the other....Works for me.