Medication

[Debbieann]

I've been reading postings, do your loved ones get medication?

Confused.com!

[Escada29]

Yes Madopar Levodopa I think its called x

[gypsywoman1947]

My husband has no medication for PSP but he does take Amitripline 10 mg daily for nerve pain like pins and needles he says , which he gets in his feet.

[easterncedar]

Dear Debbieann, I sympathize with your confusion. Every patient Is different, so our neurologist had my guy try quite a few medications over the first three years. None did any good. my guy has been taking selegiline twice a day for about two years now. I think there may be a placebo effect, but nothing else. Folks here have tried all sorts of "natural" remedies; turmeric and coconut oil are popular ingredients. Psp always wins, but it seems to me that exercise is one thing that might slow it down a bit.

What type of psp your husband has is probably the factor that will determine the rate of the progression, but it varies so much from person to person it's not possible to describe the progress with any confidence.

Try what you like, but please don't worry about it more than you must. Enjoy life as much as you can. No one has any guarantees.

Hang on. We are all In this together. Love and peace, Easterncedar

[jzygirl]

Brian has the drops under the tongue (atropine) but nothing else.

Janexx

[vlh4444]

When first diagnosed D was put on sinemet (co-careldopa) but it didn't seem to do any good so he stopped it after about a year. He did go back on for a while as an experiment but still no effect. He takes soluble paracetamol for the pain in his rigid left arm but they are not strong enough to to have any real effect. He takes occasional diazepam which was prescribed to help sleeping. It has no effect on that but does seem to ease some of the agitation and frustration.

Basically we haven't found any medication which brings about any improvement in the PSP symptoms so, unless absolutely necessary, think it's better to do without as everything causes side effects long term.

Others do seem to have a better experience of some medication though so it's whatever suits your circumstances best. Good luck with trying to make sense of it all!

Vicki

[NannaB]

For PSP my husband only has Glycopyrronium Bromide under his tongue to help reduce saliva. I didn't think it made any difference as he still dribbles a lot so stopped giving it to him but when I did, instead of dribbling, it poured so he is back on it. During the last 5 years he has had various medications that I requested after reading others on this site used them but they all had side effects. He had Sinemet when first diagnosed and for a while, he didn't slur his speach so much but then it gradually got worse so I think it was wishful thinking on my part and as I was used to his talking understood him. Others said his speach was bad when I thought it had improved. The neurologist took him off Sinemet as long term side effects are not good, and irriversable (he said). Doctors have told us there is no medication to slow the progress of the disease, some help with symptoms but everyone is different. My husband doesn't have pain at the moment but some do. If someone has PSP, it doesn't stop them getting other conditions common to folk as they get older, symptoms of which may be put down to the PSP, enlarged prostate which effects urine flow, diabetes, high BP, arthritis, etc. Medication may then be appropriate.

X

[Amilazy]

Hi M has Levodopa in form of Madopar previous it was Sinemet, it seems to keep M more alert less apathetic but I thinks tear 4 yr it is having less effect. She also has Glycoperonate was initially one tablet was very effective against excess saliva but over the last 9 months it has lost effectiveness we are up to 6 tablets a day and saliva drool though in control most of the day it is increasing again. The limit is 8 per day but night sweats are increasing a side effect.

We have been referred to Botox clinic by SALT team, hospital ENT consultant checked M out and we expect clinic appointment in Jan. Botox to saliva gland will be a 3 monthly clinic as wears off fairly quickly so we can re start Glycoperonate at low dose towards end of period.

Best wishes Tim

[Debbieann in reply to Amilazy]

My 'person' newly diagnosed, so we not a the saliva stage yet,not quite, watery eyes, and dripping nose! I guess dribbling(pouring) the next stage along with all the other horrible vile things, debbie

[Amilazy in reply to Debbieann]

Watery eyes are a sign of dry eyes causing tears but because of lack of blink reflex eyes remain dry hence more tears. Ask GP to prescribe artificial tear eye drops they will reduce runny eyes and redness. M hates them but they do reduce her eyes running and the redness.

Good luck Tim