New Side Effect with Neupro

[Lmhaake]

I’ve been on the Neupro patch off and on for 4 years. My neurologist prescribed 4mg. That was quickly not enough and he wouldn’t prescribe higher. I discovered by accident that wearing one for 48 hours and adding a new one each day actually gives me enough medication. I’ve been doing that for 2 years. Three months ago I started having major edema in my ankles. My doctor ran tests to check my heart, kidneys and liver. All are good. Then he just let it go. Today I read that a side effect of Neupro is swollen ankles. Any ideas why I’m having this now after all these years? I’m concerned that developing a side effect now might mean I need to try something else and unfortunately, I’ve tried almost everything.

[Rustsmith]

Sometimes it takes some time for side effects to appear. I have to switch opioids every six months because that is how long it takes for the undesirable side effects to appear. Augmentation is to some degree a side effect of taking dopamine agonists, and we all know that it takes some time for augmentation to appear. In your case, your doctor has checked you out and doesn't seem too concerned.

[badnights]

Any ideas why I’m having this now after all these years? I’m concerned that developing a side effect now might mean I need to try something else and unfortunately, I’ve tried almost everything.

What else have you tried? There are many opioids, and if one doesn't work there is almost always another to try. Also, there are anti-convulsants besides the big three (gabapentin/Neurontin, pregabalin/Lyrica, and gabapentin encarbil/ Horizant).

Then there are combinations of medications - a low dose of Neupro or pramipexole along with a low dose of a potent opioid like hydromorphone, or along with a higher dose of something like codeine. Or the anti-convulsant + dopamine agonist combo. Or the anti-convulsant plus opioid combo. Lots of us survive by combining meds.

There is much more you can try.

But the biggie is iron. Have you had your iron status checked periodically? Do you have the numbers handy?

[Lmhaake]

Thanks for all the info. I’ve tried the gabapentin and all the others and they literally do nothing. I’m doing ok right now. I’m seeing a new neurologist and he’s put me on 8 mg of Neupro (6 didn’t work). It’s working and I’m having my second set of iron infusions this week. It’s funny, but he had said I wasn’t anemic, but my last test was over a year ago. He ran one and I am slightly anemic, so that’s why he agreed to the iron infusions. I guess that’s why Kaiser is covering it. Haven’t had to pay out if pocket. Hopefully after my third round I can try getting off of Neupro, or at least less.