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Carbidopa/levodopa withdrawal symptoms

Posted: Sat May 18, 2013 4:04 am
by Restless in Chico
I have been on Carbidopa/levodopa for over two years. For the last six months I have experienced rebound from the drug while I tired to see if acupuncture would help. (It did provide me with some relief.) My doctor is switching my meds to the Neupro patch. I am on my fourth day with the patch and I am experiencing some benefits from the patch. my concern is how best to come off carbidopa/levodopa? I can't find anything about withdrawal from caridopa/levodopa except for Neuroleptic Malignant Syndrome (NMS). Is there other concerns that I should watch out for. I am already down by half as I no longer wake in the middle of the night and need to take another pill.

Re: Carbidopa/levodopa withdrawal symptoms

Posted: Sat May 18, 2013 4:11 am
by ViewsAskew
You were a LUCKY person to get that much time out of carbidopa/levadopa without rebound or augmentation!

As I understand it, you should be able to stop it cold turkey. We're not usually taking high doses that PD patients take. But, I'd write to Dr Buchfuhrer and ask. He maintains the So Co RLS site - rlshelp.org. He has thousands of responses to patient inquiries. You could search the site and see if he answered it, or you could just write to him and ask. If you do write, let us know what he says.

Re: Carbidopa/levodopa withdrawal symptoms

Posted: Sat May 18, 2013 2:41 pm
by Restless in Chico
Sorry, I am new to these discussion boards, the above was my first posting. How do I get to the So Co RLS site?

Re: Carbidopa/levodopa withdrawal symptoms

Posted: Sat May 18, 2013 4:59 pm
by jakesmom
Welcome to the site.

The web site they are referring to is below.


http://www.rlshelp.org

Re: Carbidopa/levodopa withdrawal symptoms

Posted: Sun May 19, 2013 9:56 pm
by badnights
If you are only rebounding and not augmenting, you might be OK, and it sound like you are. Some people find that withdrawing from levo-carb causes their symptoms to get worse, temporarily, but that might be restricted to people who augment from the drug.

Re: Carbidopa/levodopa withdrawal symptoms

Posted: Mon Jan 22, 2018 12:55 pm
by Caitrin
Three weeks ago was bedridden with acute bronchitis and due to long periods of inactivity increased my usual once daily 50/250 ml. carbidopa/levodopa to half pill in a.m. and then another in afternoon for a total of two/day. Now that I am feeling a bit better and can be on my feet half the day I cannot taper the C/L to one/day. I am absolutely miserable a.nd fear waking up in middle of night thus taking another half pill which takes another hour to kick in. I live in New Jersey and none of the doctors will dispense opioids which I used two years ago for severe sciatic pain. I would appreciate any advice or suggestions and if someone knows of an RLS specialist in NJ please give me name of the physician. My primary is clueless. Many thanks.

Re: Carbidopa/levodopa withdrawal symptoms

Posted: Wed Jan 24, 2018 8:52 am
by badnights
Oh I feel for you! Quick answer, but hopefully some other people will provide more advice, is to quit for 10 days, clean it out of you and let your body re-set. Then you'll probbaly be able to resume at the original dose, or lower. To quit, you need to clear your calendar - don't expect to be able to do anything for 3 or 4 days at least, the whole 10 would be best to take off work and not expect anything of yourself.

With dopamine-type meds, there really is no other way. It's much easier, not so much torture, if you have an opioid. But not essential.

Instead of resuming on a dopamine med, though, ask your doctor if you can try Horizant, or if that's too expensive, pregabalin/Lyrica or gabapentin/Neurontin. Those are all alpha2- delta meds used for WED/RLS.

And soon as posisble get your ferritin levels checked. Regular people can have levels of 20 but WED/RLS people need much more - at least 75, oreferably 100.

Re: Carbidopa/levodopa withdrawal symptoms

Posted: Thu Jan 25, 2018 9:13 pm
by ViewsAskew
How far are you able to travel? While not that close, there are Quality Care Centers in Maryland, Massachusetts, and Connecticut. In the General section of the board, toward the top of the list, there is a post about favorite doctors. I seem to recall someone listed a doctor in New York City that they felt was good. Would that be doable for you?

Re: Carbidopa/levodopa withdrawal symptoms

Posted: Fri Jan 26, 2018 3:54 pm
by Caitrin
My husband continues to give me a 50 ml. tramadol each day until I see my primary next Tuesday. He has lived through this terrible disease with me for 30+ years. He had an ileostomy late Sept. and was in hospital 9 weeks. He is able to drive me to doctors' appointments. Soon he will have his left hip replaced and should be able to walk without walker. Things will get better for us both. I need name of doctor in NYC please. Many thanks, Caitrin in northwest NJ.

Re: Carbidopa/levodopa withdrawal symptoms

Posted: Mon Jan 29, 2018 6:22 am
by ViewsAskew
If you need to find this info again, we have a thread in the General section that lists people's favorite doctors. Here is what I found for New York.

Montifore Hospital
Neurology Department
Bronx, New York

I mostly work with the peds department (my 8-year-old daughter is the RLS sufferer) She sees wonderful doctors there. But I have also had the opportunity to work with the adult department of Neurology (they directed me to Peds) They too are fantastic and very open minded and will not dismiss RLS