Sunday, March 16, 2014

My Disappointment with the Neupro Patch

For the past ten years or so, my Parkinson symptoms have been in the on/off stage. This has been a daily good news/bad news cycle for me. On the one hand, I have a few hours most days when I am 'on'. During those hours, I am almost symptom free. But, during my 'off' hours, my symptoms come back with a vengeance, often literally knocking me off my feet.

My neurologist has been tweaking my medications, very slowly, because I react very badly to fast changes in my meds. I had a deep brain stimulator implanted about six years ago, and that was supposed to help me to even out the symptoms, but unfortunately, it made the on/off cycle worse.

So I was quite eager to try the new rotigotine patch, sold under the brand name Neupro. My neurologist thought I would be the perfect candidate for this new drug. It comes as a patch that releases an even dose of the medication.

Rotigotine is part of the same class of meds as Mirapex and Requip. I have been on Mirapex for more than ten years. The main side effect for me has been a sort of dyslexia, where I need to reread a passage several times, and I fall asleep while reading. This has had a serious impact on my life, because I love to read, and was a librarian back in my prePD days.

I tried Requip for a month. It seemed like my brain was less foggy and the dyslexia eased up, but my tremors and muscle weakness were worse. I had to choose between not being able to read and not being able to walk, so I chose mobility and went back on the Mirapex. Mirapex has been shown to lower impulse control, causing a gambling problem as an actual side effect. I have blamed my shopping addiction on Mirapex, but my husband (Derek) assured my neurologist that I had that before PD.

I have always had a problem with falling asleep. When I went to a sleep lab, the test showed that I was waking up an average of 19 times per hour, and that it was my leg movements that seemed to be waking me. I was diagnosed with restless leg syndrome. I also have fibromyalgia. I saw a TV commercial for the drug Lyrica, so I asked my doctor if I could try it for the fb pain. A very pleasant surprise was that my restless legs settled down. 

When Neupro was finally available in Canada, I switched it for Mirapex. I had more muscle pain than usual, and didn't sleep well the first night. Then on the second night, the restless leg syndrome came back with a pain that I would classify as at least a 10 on the pain scale. It was a desperate pain: I couldn't stand, sit, or lie down for more than a few minutes at a time. I tried calling my neurologist around 3 in the morning (I only do that when I get desperate), but his service didn't get the message to him until about 8:00. In the meantime, desperate for some sleep and out of my mind with pain, I took a handful of pills - about 6 sleeping pills, a few muscles relaxants, and a few T3's. I woke Derek to tell him, because after I took the pills I felt guilty in case it was enough to kill me, and it was the day before Valentine's Day. I think I also took some Mirapex. When I finally fell asleep, my neurologist called, and my daughter didn't want to wake me. (Before Derek left for work, he woke her up and told her to look after me).

When I finally talked to my neurologist, it was 5 pm. He told me to just go back to the Mirapex. 

Derek wanted me to give the Neupro another try. I had tried the 2 mg patch, and he thought maybe a higher dose might help more. So I tried again, but for less than a day this time. As soon as the muscle pain started again, I pulled off the patch and took Mirapex.

It has been my experience that I never know how much a drug is helping until I stop taking it. So if any good came from this experience, it is that the Mirapex does actually help me a lot more than I thought.

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