Hi. My mum has PSP and has just moved into residential care. She is starting to get problems with swallowing.
She has had the classic diagnosis journey - Parkinson’s, MSA and then PSP. As a result of the Parkinson’s diagnosis she was put on the usual mix of drugs (alongside ones for other conditions). The dosage was then increased - one of the reasons for diagnosis was the lack of response. The cocktail she takes is significant and is a nightmare for the carers to administer and now for mum to swallow.
does anyone have any experience of stopping the drugs? I figure they were prescribed for Parkinson’s (which she doesn’t have) and she didn’t respond to them anyway so what is the point.
I’m speaking to Mum’s neurologist next week but any experience for/against stopping them would be appreciated.
Thanks
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Hi, my husband takes co benodopa and initially it helped somewhat with tremors. Recently he has greater mobility and balance issues swallow issues with tablets mainly and some distressing bowel issues and when we saw neurologist a couple of weeks ago he suggested a plan for a slow reduction then ceasing the Parkinsons meds as they can affect the bowel. His suggestion is to see if there is any Improvement in current issues without the medication or worsening of other symptoms and said husband can always go back on meds if appropriate. His focus was on best approach to manage main symptoms and not taking unnecessary meds. It's a good idea to have full meds review when you have the neuro appt. Good luck
I have PSP and I struggle taking pills, at this stage I am not taking any medication apart from a gout tablet and blood pressure tablet. I found the Parkinsons medication made no difference to me
My Husband has also been on the Parkinson’s/PSP journey and was commenced on Madopar four years ago. While this medication initially helped with muscle stiffness it would appear that it has gradually caused more side-effects than benefits, including vivid dreams/ nightmares (he sleeps more peacefully now since stopping the evening dose 6 months ago) and we believe constant diarrhoea. After a recent appointment with his neurologist, she agreed there was no benefit to continue, so we are currently reducing the dose by 62.5 mg per week, although with an option to recommence on a low dose.
I hope you have a positive appointment with her neurologist.
My husband has PSP diagnosed first appointment with the neurologist (mainly because of vertical gaze palsy) and confirmed by a second opinion. The neurologist suggested we try benodopa which he said can sometimes but not always help with PSP symptoms. My husband wanted to try it. He was prescribed a low dose to start with increasing gradually but there was no improvement in his condition and on review it was reduced and stopped. My husband agreed there was no point taking it without any benefit.
These are our experiences and informations about the problem:
Only some patients, type PSP-P (PSP-Parkinsonism) and during a variable time on the early stages (4 to 8 years), improve their bradykinesia and rigidity by taking Carbidopa/Levadopa/Sinemet. After those years in which L-dopa works, the disease generally evolves to a type of PSP, frequently RS, CBD,...).
However if you didn't feel any difference then maybe it was not working for you and suffer from other variants of PSP.
“daddyt point out on 2022-07: It's important to note these are two different proteins involved with PD and PSP: Alpha-synuclein – PD and Tau - PSP.Levodopa Cardopa (Sinemet) has shown to have reduced the symptoms of bradykinesia in about 30-40% of PSP patients, depending on the variant. Its efficacy can lessen over time. My MDS has told me that a number of her patients went off the drug, then had better results the second time around. I have been on Sinemet for eight years and still benefit from its use alongside a daily exercise routine“.
Zerachiel point out: With PSP, when the body is under stress or trauma like having an infection the PSP symptoms can increase and new ones appear; after the infection or trauma has cleared these new PSP symptoms can then start to go away although you will find that you don't get back to where you was before the trauma or infection.
Sinemet (levodopa and carbidopa) is usually prescribed to see if the PSP variant is responsive to the drug, usually if there is no improvement the drug is discontinued, gradually.
• Control of palliative medication against depression, as well insomnia and anxiety. In our case, one pill of Sertraline-50 at breakfast (depression) and one pill of “Lorazepan-1mg” (insomnia and anxiety), one hour before dinner (*). Of course all these drugs were prescribed by a physician. After around 6,5 years with this medication no appreciable side effects on our case.
(*) I have read that to improve the patient's sleep are using "Melatonin" successfully. Others use “Trazadone”. Ask physician.
Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.
A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.
What a minefield this is to travel! I am male, 82, PSP diag 6 yrs. and never had any meds except sleeping tabs. My neurologist says Parkinsons medication is NOT suitable for PSP. I go along with that, tho like some others he seems a it lazy on research ,with not time to investigate. Good luck with it all, and I can send you my bullet points on receipt of personal email address if you wish. Cheers TIMbowPSP
My husband was diagnosed with PSP in June 2021 and was immediately put on co-careldopa. He initially had a very good response. Through the first year the dose was increased, and this managed to keep tremors at bay; it also helped make his speech and movement more fluid - almost normal. After a year, Amantadine was added to the mix (this is also used with Parkinson's disease) and gradually stepped up. This reduced stiffness and gave more "energy" in the early parts of the day. Taking Amantadine too late in the day (i.e. after lunchtime) would make him agitated and he would struggle to sleep, but taken at the right time, it continues to help even now.
After more than two years, the neuro nurse suggested stepping down the co-careldopa gradually. Stopping the evening and night time dose of co-careldopa was a positive change - his sleep was better. Trying to reduce the day time doses brought on more severe tremors and twitches, so we continued for half a year before stepping down completely.
We also tried reducing the Amantadine dose, but that immediately led to excessive daytime sleepiness, so we have kept the maximum dose there.
Some of my husband's other medication (e.g. statins) have been discontinued in consultation with the GP. It is in general best to reduce the medication to just the ones that are clearly effective. We've asked for liquid medication to help with swallowing but most of these medicines are either unavailable in liquid form - or considered "too expensive".
It seems everyone responds differently to this medication. From what you've said, I'd take the neurologist advice on how rapidly your mum could be weaned off the co-beneldopa, but ask the care home to carefully monitor for any changes in speech and movement, tremor, stiffness, pain and sleep.
Hi. Until the diagnosis of a neurodegenerative disease of Parkinson and Parkinsonism, Sinemet (Madopar) is usually prescribed and titrated till maximum benefit. If it doesn't work, then it's tapered off. What worries me at this particular point in time is your mom's swallow problem. Unfortunately, this problem is extremely difficult to control and rapidly progresses. Best wishes to you and your mom.
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