We live in a small country town and my husband is only able to see a neurologist every six months. At the last visit he said he thought John had PSP and an MRI has confirmed this. He has been treated for PD for five years and is still taking dopamine. These tablets usually make him feel awful. I would love to know which Medications other PSP sufferers are taking. Your help would be appreciated. We are in Australia.
Thank you in anticipation.
I'm taking other medications for various health issues but only Sinemet for PSP right now. I'm mostly in Stage 2 with a few symptoms still in stage 1.
Carbidopa levodopa is pretty much it as a drug for treatment of PSP. Even this drug has a limited benefit. It tends to stop working at some point. If it is making him feel awful stopping it might be a consideration. The pros and cons have to be weighted.
My husband took Sinamet. He felt it helped. I don't know but our neurologist said there was no treatment for PSP. It was simply treating symptoms. So we stopped other medication - statins and BP
He didn't need medication apart from occasional paracetamol.
Others on the site have treated problems as they arise. X
If he is taking a medicine that makes him feel bad and has no apparent benefit, talk to the doctor about stopping it. There will probably be a "weaning" off the medicine process, don't just stop taking it.
As for the neurologist visits they probably aren't all the important to be honest. The general care doctor will oversee any medicines to treat symptoms as they arise. Dad's neurologist eventually told him there was no reason to come back, unless he just wanted to, since there was nothing to be done medically for the disease.
Ron
We live in Spain and it will be 10 months between our last and next appt! Our local doc is the one we rely on.
Ian takes Sinemet and Xadago, but he has other health issues including diabetes and severe diabetic neuropathy, so he has a bundle of other meds too, including codeine and pregabalin...the list goes on!
Not sure whether they do what they are supposed to, but when he accidentally took a weaker dose of Sinimet he was defo worse.
Hope this helps.
Juliet x
I wouldn't worry about seeing a neurologist, they can't offer any help. Best to build a local support network, GP, Speech therapist, physio & OT, they tend to be the key ones.
My husband has PSP. He does not take Sinemet, as his neurologist, who runs the Motion Disorder Center at UCSD says it doesn’t help.
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