Medication for PSP

[Zarzuela]

I would like to discuss with anyone else who has my symptoms and is taking my medication. Carbidopa and Levodopa and Amantadine

[Moshe_Strugano]

One of my colleague faced the symptom, however, I didn't remember the medication he took. Will ask and let you know

[AJK2001]

Hi Mum took Sinemet (Carbidopa & Levodopa) from early on after diagnosis until swallowing pills became an issue. Initially I think it had quite a big impact (though Mum wasn't convinced) but I felt that her movements became smoother, she didn't lurch/stagger as much. However I think the benefit wore off, probably after about 18 months but we were too scared to stop the tablets in case they were still having a positive effect and we would see a sharp decline.

Mum was also briefly on amatadine but the introduction wasn't managed well by the GP and at the time I was living 3 hours away so couldn't keep an eye on her as I'd wished, so she was taken off it. Whilst on it she did have several falls, but she was also on blood pressure pills, so the amatadine could have caused the blood pressure to drop and cause the falls but no-one had the time or inclination to look at that. Looking back I should have stayed with her for a few days and monitored her blood pressure to see if there was an impact. I felt she wasn't on the amatadine long enough to know if it helped or not.

[T-val in reply to AJK2001]

My mum had the same reaction to amantadine recently, the side effects of dry mouth were a benefit but her falls increased and she was hallucinating daily. She has been taken off it in the last 10 days and not hallucinated since however still got the bruises from the numerous increased falls from wandering.

[Millidog]

Hi, My husband is on Carbidopa/levodopa for a couple of months to see if it would reduce hand tremors, when in fact these have increased and i am seeing a sudden dramitic decline - sudden falls after none for months, confusion, disturbed nights, more toilet visits, reduced appetite, slowed and more wobbly walking, great difficulty rising from chair/bed, constipation and more. I appreciate these are all common in PSP progression and that there can be sudden decline episodes but am concerned it is the medication. I acn see and husband feels no benefit from taking the medication and am planning to contact the neurologist to see if we should stop the medication. Not good news i know but hope the information helps. BW Millidog

[Cantiga]

I take carbidopa levadopa It helps. Perhaps I imagine it.

[Boman]

yes, I was prescribed Levodopa (medium dosage) shortly after symptoms started and initially I noticed an impact. My movements were less obstructed, somewhat smoother and tremors less severe. Though as symptoms gradually worsened, the impact wasn’t in sync or in line with the progression. GP and consultants agreed there was some, limited benefit still and kept me on same dosage.

This has been the case for several years now.

My symptoms worsen (as one would expect) but according to at least one consultant, slower than initially thought (or feared). Other meds were tried out but none seemed sufficiently effective to keep me on them and a few made me even more drowsy and confused. My cognitive abilities have declined in last two years and when I stopped all other meds (except L-dopa), the drowsiness was somewhat less.

Not sure any of this is very helpful but I can only affirm L-dopa has had some limited effectiveness

Wishing you the very best and happy to answer any questions

Bo

[Zerachiel]

hi, my wife was on Levadopa for around 18 months slowly increasing dose to 800mg a day, the last 12 months of that she was also on Amantadine.

She did notice some benefit with walking and getting out of a chair but it did not help with eyelids closing, swallowing or speech.

Side effects were loss of bladder control, disturbed sleep. She would also get extreme temperature fluctuations; these were in her mind and not actual changes in temperature but she would either sweat profusely complaining of being hot or shiver uncontrollably; this was overcome by convincing her it was not real!

We decided to slowly reduce both medications to see if there were still any benefits and when she was drug free she complained of stiff aching legs; she now takes Ropinirole to combat this which seems to help.

[Millidog]

Hi Thanks for this info - its seems similar in side effects for my husband

[Zerachiel in reply to Millidog]

Hi, as the neurologist has limited treatments available and it is hit or miss if it works for you.

I don't think it hurts to carefully reduce medication following a doctors guidelines and documenting any changes; the neurologist may find this information useful and advise on a different medication for any outstanding issues, our neurologist was happy to be presented with a documented explanation and said he would have advised exactly the same. You can always increase dosage carefully again if you need to.

Don't forget it is a personal choice to take medication and if the side effects outweigh the benefits then you can choose what you want to do.

[Dickwin]

Zarzuela,

My wife was diagnosed with PSP more than 5 years ago, but she started showing symptoms 10 years ago. She was originally given a Parkinson's Disease diagnosis by her Movement Disorder Neurologist about eight years ago. At that time, she was prescribed Carbidopa/Levodopa and Amantadine. These drugs did not seem to have any effect on her condition, which continued to progress. So they tried increasing her dosage. This did not help at all. In fact, she started to feel sick upon taking the medicine. This is when her Neurologist started thinking that my wife's PD was misdiagnosed. We were told that PD patients almost always have a positive reaction to Carbidopa/Levodopa and if they did not, it was likely that the PD diagnosis was incorrect. The Neuro then took her off of all medications and suggested that she most likely had PSP. As time went on the disease did progress, adding new symptoms and intesifying existing symptoms. A little over 5 years ago, the Doctor re-diagnosed my wife as having PSP and recently the Doc further diagnosed her as having the PSP variant PSP-PAGF.

There are now 8 different variants of PSP that have been identified by the Medical community. There is one variant that is named PSP-Parkinson's. Patients with this variant have symptoms that look and act a lot like Parkinson's Disease in early stages. During the early stages, PSP-Parkinson's patients do get benefits from Carbidopa/Levodopa, but those benefits wear off pretty quickly. PSP-Parkinson's patients make up 15% to 20% of all PSP patients. The other 80% to 85% have one of the other 7 variants with a large majority having classic PSP, AKA PSP-Richardson's. Carbidopa/Levodopa does not seem to have any positive effect on patients with the other 7 variants.