What medication does anybody take for PSP?

[camper]

[hmfsli]

Hi Camper

I think, if truth be told, most of the medication is to deal with the symptoms of PSP rather than the PSP itself; Mum takes Rivastigmine and Citalopram. There are a few people on this site who are on the clinical trials for davunetide which looks as if it might hold out some hope (fingers crossed!).

Sorry I can't be of more help

h

[Jan_K]

Mum died this christmas after 8 years of PSP but the last few months she took Madopar ( which really is for parkinsons)This actually did help her move more easily and kept her active. i say this because one of the side effects which is very rare is night sweats which Mum got badly so the Consultant took her off it. As soon as that happened she slumped. She was being treated in hospital for a water infection. I insisted that she be put back on it and almost immediatly we saw a difference. Sadly the water infection was too much for her and it kicked off the latter stages of PSP quickly and passed away.

i do believe that madapar helped. i would try anything rather than nothing.

all the best.

Jan x

[dorothy-thompson]

Dorothy-Thompson

As hmlsfi says there is no medication for PSP. My husband has acupuncture and chinese herbs and does yoga (paid for by us) and they seem to be helping somewhat. But he also exercises as much as he is able to and feels better for it. But he refuses to take anything for the stress, and the strain on me is at breaking point sometimes but a 100 times worse for him.

dorothy x

[jillannf6 in reply to dorothy-thompson]

hi dorothy

u really r struggling - i can tell

can y get any respite for your husbnad or was i the whos aid on the sitie tha tthe only perspon who cannto get any respite from the Psp is the person who has the idsease

how true that is!

i remain positive but when i annoy my partner by fallling adn droppign and breakign things and by being demandign it si so dificult and i end up in tears

But your husband (and you)really need somehting for hte stress - is he sleeping ok ?

I am having real problems with sleep (lasat 6 months) and am taking trazadone which helps

but not gettign enoguh sleep and run out of co enzyme so not much enrgy at the moment adn no date for teh move is all addign ot the stress an dhte Psp

lvoe jill

[dorothy-thompson in reply to jillannf6]

Hi Jill

How right you are as always. Sleep can be a problem, we have separate rooms which helps but I seem to be "ON ALERT" frequently during the night.

Take care and thank you.

dorothy x

[jillannf6]

hi cmaper

no meds to take - i hava tried c o careldopa and amantadine neither of which helped and hence the Psp rathe tahn parkinsons diagnosiss

i do tai chi for balance and wellness and take an anti depressant which keeps my spirits up

love jill

[DougK]

My wife takes Nortriptline & Mirtazapine at bedtime as well as Carbodopa & Levidopa 3 times a day. She also takes CoQ10 three times a day & fish oil 2 times a day. She takes a Folbic tablet in the morning. The thing that really helps the symptoms is Electro Convulsive Therapy (shock treatments) every 2 weeks. The side effect is memory loss which gradually comes back.

[dllera]

Hi Camper - as stated above there are no actual medications for PSP -this is a control symptom disease -with that said -there are some specific medications that seem to help control these symptoms. Now the first thing you have to determine is what sub-type of PSP a person has. PSP-R or PSP-P. The reason this is important is that some medication works better for differnent subtypes. My dad is PSP-P so Sinemet gives him some very modest relief (some is better than none) whereas someone with PSP-R would get zero relief and the side effects would then out-weigh any benefit. Currently my father uses for PSP -pain medication, Amitriptlyne, Clonazepam & Sinemet. For pain we went from Tylenol 3's to Tylenol 4's -to oxycodone and now using Morphine (we are in very late stages) -for musle spasms we tried trizanidone and baclofen -no success -Baclofen did provide relief for just a little bit but then stopped working. Valium worked worked early on and then we moved to clonazepam. Before amitriptyline we used doxepin.

Hope this helps!

Danielle

[PUTLAND in reply to dllera]

Hi Dllera, I dont know which PSP my husband has his medication at the moment is Stalevo 4 daily Rivastigmine 2 daily and Mirtazine 1 at night. Could you please tell me the difference symptoms of the two. My husband had PSP approx 7-8 years. Still walking around but falling a lot, speech very bad and receiving botox on his eyes to keep them open. Welcome your comment, xx

[camper]

Thankyou everyone for your comments. I'm not sure whether the Parkinsons that I had originally is turning into PSP. The last time I went to see the specialist

he said I didn't have parkinsons but I had pure akinesia gait freezing (PAGF). Even the parkinsons nurse didn't know what that was. The main problem I have is I'm very slow on movement my feet stick and I've fallen many times and I had a bad fall in the hallway and broke my humerus (upper arm) which has really knocked me back. I have a three wheeled trolley which I use indoors. My husband is on edge because I look like I''m going to fall over every time I get up and is constantly telling me to sit down.I take madopar three times a day and amantadine twice a day. I also take one amitriptyline tablet which helps me sleep. I just wondered whether anyone else took the same tablets as me.Also has anyone out there been told that they have PAGF. This site is so helpful and I feel like I'm not too badly off compared to a lot of people on this site.

Thankyou once again everyone for your comments.

Camper

[anniemay in reply to camper]

Hi, my husband has exactly the same problems as you - don't know madopar but he was on amantadine for a couple of years. During this time he developed water retention in feet & ankles, and had trouble sleeping, interrupted with vivid dreams, and incontinence. We found that dropping the evening dose of amantadine helped a lot, then I read somewhere that you should not take amantadine later than 4pm due to these very problems. Since coming off all medication (his choice), I noticed a slight worsening of movement problems but he did not. He says the "benefits" of medication do not outweigh the side effects. He no longer suffers from water retention, incontinence an infrequent event, sleeps better, is much more relaxed about his situation, but his feet still stick to the floor and falls constantly (mostly I stop him from going right over but has his share of cuts and bruises). We are 8 years since originally diagnosed as Parkinsons, and 6 years since proved it wasn't - but I feel we still haven't got a definitive diagnosis! Taking each day as it comes, regards ann

[dllera]

Hi Camper -how is your eyesight? Have you noticed any changes?

[camper in reply to dllera]

Hi dllera

I haven't noticed any changes in my eyesight. what sort of changes do you get with psp?

[Marykayrenaud in reply to camper]

Hi camper,

My mother's vision is declining to the point that everything is blurry. She can see some things from a distance but cannot identify food on her plate. She's 85 and has been dealing with eye sight problems for at least 10 years.

[camper]

HI anniemay,

Thanks for your reply that's interesting to know your husband has the same problems as me. Perhaps he has PAGF (pure akinesia gait freezing) which is what I've been told I have?

I fell again today getting out of the car I fell backwards and cracked my head on the kerb..That's the third time I've cracked my head.If only my feet didn't stick to the floor I'd be fine. I take madopar three times a day and I take amantadine twice a day but not after lunchtime because I was told it affects your sleep. My writing is still small and illegible and I don't have the tremor that you associate with parkinsons. I hope I don't have PSP as reading all the comments on this site it doesn't sound a very nice thing to have. Next time I see the neurologist I shall have a lot more questions to ask.

Regards

Camper

[PSPA_JillL]

There is no disease modifying medication for PSP, but there are lots of drugs that can be usefully used in managing symptoms. Your specialist and parkinsons nurse will help with this along with your GP.

[Hidden in reply to PSPA_JillL]

My doctor is didnt say anything specific. Says dad has psp. But he had said its parkinson too. He prescribed madapar

[Steven10]

Hi Camper,

My mother was diagnosed in July 2011 with PSP, and as the neurologist advise there is no treatment or cure, and seemed to not really be interested in the up to date options such as drug trials or CoQ10.

So we did our own research and found about the very promising Allon Therapeutics phase 3 drug trial of Davunetide. You can also review the various research and patient recruitment opportunities on clinicaltrials.gov website, just put in 'PSP' in the search.

Mum also sees a qualified Herbalist/Naturopath to make sure she is on track with her nutrition and diet, and to get advice on suitable natural vitamins/supplements she could benefit from for her general health.

We also came across promising results with Co-Enzyme Q10, so have purchased 400mg wafer tablets from American company Vitaline, as the Vitaline CoQ10 has been clinically proven, used in the actual PSP trials, and is in wafer form specially suited to PSP patients who have difficulty swallowing. Mum takes 3 a day at the moment (1,200mg per day), then the trial recommends to double dose at a point, after 3 weeks mum's speech response was improved, and she seems more engaging in conversation. It is now 7 weeks, although she has bad days, she doesn't sleep all the time on the couch, she is up now and again to iron a couple of dad's shirts and occasionally and even makes the dinner, which is encouraged to keep active.

We have found a cheaper UK brand CoQ10 'Natures Aid' which is available in 300mg, which she will start in the coming weeks when the Vitaline brand runs out.

A Dr Diana Apetauerova at the Lahey Clinic, US, is currently conducting CoQ10 trials for PSP patients. There has been Co-Q10 studies done for PSP and Parkinson's over the years you can find on the various pubmed databases.

I encourage you to do your own research on the above to form your own opinion, and to take what you find to your doctor to discuss.

Hope this helps.

[Hidden in reply to Steven10]

What is CoQ10??

[jillannf6]

hi camper

i have tried co q 10 and in the ,larger dose it certianlyh gave me more energy

bUT it is v expensive2 buy

I got a deal at holland & barrats 2 fo price of 1 but have not been shoppign for ages so could try online

the davunetide was not 4 me as i already use a nasal spray

I was diagnosed in dec 2010 and am still here altho fallign(2) many times a day

love jill

[edkor]

SO WHAT DOES ANYONE TAKE THAT SEEMS TO WORK ON PSP?