Need HELP asap!! Anyone (patient or caregiver). Who has a medication they think is helping them EVEN A LITTLE please!!

My Dad has to stop taking levdopa, and now stopping mirapex. Levdopa was useless, and mirapex was causing him to be very drowsy, extremely unsteady, his speech is way worse and he was having terrible stomach aches. I JUST spoke to the neurologists secretary and she told me he would be open to trying ANYTHING I can come up with....

I really would like to know what is helping all of you, or not helping. I have until Tuesday morning to come up with something.

ANY and ALL opinions are appreciated.

THANK YOU!!!!!!

MJ

27 Replies

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  • Hi MJ

    Sorry you are going through such a terrible time with your dad. Unfortunately, there doesn't seem to be "any" medication that helps this awful condition and after trying a few things, my hubby now takes nothing at all as none of the meds have improved the condition. Sadly, we have to stand by and watch our loved ones deteriorating before our eyes knowing that there is little to be done. I would suggest you speak to Cat Haines at the PSPA oe whoever your PSP nurse is. I am sure they will be able to offer some advice. In the meantime, try and stay strong and make sure you look after yourself.

    Take care....................SuzieQ xx

  • Hi Suzie.

    Thanks for your reply. I live in Canada where there is virtually no support for PSP patients or their families, unlike in the UK. That is why I joined this group. The lack of information and assistance is just awful. sadly, we are not able to call our PSP nurse, there is no such thing! I figured that if I asked here in the blog I would get some ideas....and its working!!

    You are correct, this disease is without question - HIDEOUS. So sad.

    Take Care Suzie....thanks MJ

  • hi mj,

    sorry your getting all this trouble with your dad , i have been takeing levdopa

    which hasnt done anyting but gives me tummy ache,i also take another drug

    called ropinirol and now DR james rowe at addenbrookes in cambridge has told me to stop takeing the levdopa and hes putting me on a drug called

    Amantadine and then hes putting me on a low dose of Clonazepam i hope

    this helps and good luck with your dad

    kind regards

    ray

  • Thank you Ray for replying!!

    I have written down what you have said and will discuss it on Tuesday with Dad's Neurologist. I appreciate your help!!

    I wish you all the beat and good luck with the new meds. I will be watching for an update!!

    Take Care

    MJ

  • hi mj mark,

    hope your keeping well hows your dad doing and

    how did he get on about his meds did they give him

    something to help or are your still banging your head

    against a brick wall,im on diffrent meds now called

    amantadine and clonazepam but im still getting bad

    tummy ache they are now saying its caused by to much

    asid in the gut so they put me on ranitdine twice a day

    i have been on them two or three weeks and still no

    inprovement so i dont know whats going on, well

    i hope you have a happy new year.

    best wishers

    ray

  • Hi, my husband has been taking the same drug, gradually increasing the doseage. I refused to let him take the highest dose (800mg a day) because of the high risk of halucinations and broken sleep pattern. But even on 650mg a day the resulst have been negligible and in fact in the last week or so his mobility has deteriorated so much he can barely stand up without 2 of us helping him. So if anyone suggests increasing the doseage rather than trying something else beware of the side effects. We don't see the neurologist again until December so I don't know what he'll recommend. And he'll be the third different doc this year so who knows.

    Take care. Hope you find something that works.

    SheilaN

  • Hi Sheila,

    Sorry that you and your husband have to deal with this terrible disease as well. So hard to deal with!

    I know there is a class action lawsuit pending for people who have take mirapex and had awful reactions! I made Dad stop taking it because he was insanely exhausted all the time and had such terrible stomach aches. Bad enough he has to deal with all the PSP symptoms, he doesnt need more issues!

    Good luck with your next appointment, if you find a new drug that offers ANY kind of hope, let me know and I will do the same!!

    Take Care

    MJ

  • When I said the same drug I meant Levodopa. SheilaN

  • LOL didnt see this till after I replied. Remarkably, Levodopa did absolutely nothing for Dad in six months!! Nothing positive or negative!

    MJ

  • Hi MJ,

    So sorry to hear about your Dad :-(

    Mum has been on Rivastigmine for a while which helped initially but now, even though she is on the maximum dose, it doesn't seem to have much effect. She tried Seroquel for a while but it made her SO sleepy we stopped that after 4 weeks. Wish I could be more help but the options are so limited

    :-(

    Our neurologist told us that Amantadine had a mild to moderate effect in approx 20% of cases but as Mum hates taking tablets anyway and seems to get side effects from anything she takes, we decided the odds weren't good enough to try it but it might work for your Dad

    Good luck

    Love Kathy xxx

  • Hi Kathy,

    Sorry you and your Mom are having a hard time too. I appreciate that you took the time to write me. I have written down your suggestions and will talk to Dad's Neurolgist tomorrow morning. While I know that there are NO DRUGS specifically for PSP, I am just looking for something to give my Dad hope....do you know what I mean?? Any kind of improvement is better than sitting around doing nothing!

    Thanks for helping

    MJ

  • Sadly there are no disease modifying drugs available for PSP/CBD, nothing that stops the progression of the illlness or reverses it. However there are drugs that can be used to manage symptoms so it is important to discuss the symptoms that are most significant to your Dad and ask the neurologist to address those. It would be a good idea for you to speak to your PSPA nurse specialist before the appointment.

  • Hi Jill,

    First, thanks for writing. I know there is nothing for PSP patients YET, someday (hopefully soon) there will be. I wish I could talk to a PSP nurse, we dont have them in Canada......virtually no support at all!!

    I joined this site because of the great support here.....and getting advice is easy, we just have to ask!! So happy I came across it!

    Thanks for replying!!

    MJ

  • Jill, do you have any suggestions for restlessness? Mjmark, dad takes an antidepressant which took the edge of the darkness he seemed to be stuck in. There is a particular type that is suitable for Psp. The name escapes me. Sorry!

  • Hi Julie,

    Dad was given mirapex to try at his last neurology appointment. When I got home and read about it, I was confused for sure. Normally given to patients who suffer from restless leg syndrome or abnormal body movements. Dad has none if that!! It mad him extremely sleepy all day....plus played havoc with his stomach. I am simply looking for something, no matter how small to improve his outlook and try to bring some hope! Maybe give him more energy, improve his speech, make him more stable on his feet......anything!

    Thanks for writing.

    MJ

  • I believe the anti-depressant you are trying to think of is amitriptyline. I take 150 mg. a day and 100 of trazodone before bed to aid in my sleep. i don 't really know whether the amitriptyline helps me or not. but I continue to take it. Lynda

  • Hi Lynda,

    Sorry you have to deal with this disease, its just awful.

    dad originally took Trazodone a few years back, he found it did nothing for him. Will discuss Amitriptyline with his doctor tomorrow.

    I wish you all the best, if you come across a great medication, let me know, I will do the same!

    Take Care of Yourself,

    MJ

  • Hi MJ

    have you tried coq10? not sure if there are any effects but maybe it gives people a bit more energy. my dad was on the noscira drug trial and it didnt work at all. I am looking into different methods too, so if you come across anything please let me know...I have all but lost the dad I once knew - he cannot walk or talk anymore at all. I might look into amantadine as a few people have suggested it...

    hope you find something - it's so bleak at times isnt it.

    fran

  • Hi Fran,

    Yes, I did get my Dad some COQ-10!! He has been taking 1600 mg for about a month now. So far I don't see any improvement yet, but it isnt doing him harm, so he will continue to take it for now. Sorry the Noscira trial wasn't of help to your Dad. I have great expectations for Davunetide if it ever makes it to production!

    I know exactly what you mean about the Dad you used to know!! Since I moved in here to help, instead of snapping at Mom, mostly things are my fault now. He can have such a reaction to the smallest statement....its just not him. I ordinarily do not mind taking the blame or the wrath because that means my Mom doesnt have too!! :-)

    Will for sure let you know if I find ANYTHING that helps even the slightest, please do the same for me!

    Take Care of YOURSELF as well,

    MJ

  • hi

    i take anantidepressant )(bnt not amitriptylien) but it does help my mood tremendously - strangely since diagnosis with hte Psp my jmood has been much bette anyway!!

    i have terribel troubel with the restlessness & agitation adn so far have nothing to help

    bu ti shall keep u posted as there r drugs to help

    levldopa / amanatadien have not worked 4 me an idnication that the parkinnsons element if not there in the PSP

    takign co ensymeq10 whuch has given em stronger nails!

    Love JllI

  • Hi again Jill

    You are without a doubt, a strong person! I love that you are always willing to help despite the fact that you have this horrific disease. Amazing.

    Mirapex is suppose to be for people who suffer from restlessness. While you have to be careful of side effects, maybe as your Doctor about that drug?

    Take Care of Yourself!

    MJ

  • Pleased to see you are getting useful help and support on the site you may also find it helpful to join our organisation as an international or the curepsp american association.

  • Hi MJ

    I is so sad to read that you have no support in Canada , we had hoped to live in Spain until my husband was diagnosed with PSP we then realized that the best help was in the UK , there is a lot more help and awareness here plus our friends and family.

    All drugs are very much trial and error !! Ken tried a lot , some just did not work others gave him hallucinations which at first were quite frightening for me although thankfully he did not remember what had happened when they passed.He became much more at peace with himself when he eventually came to terms with the fact that there was going to be no cure .

    It possibly depends on a persons age when battling with this illness , my husband was age 83 when he passed away 5 weeks ago , he had been a strong person mentally and physically and never looked or behaved his age , he had a real zest for life which this awfull illness gradually destroyed , he was very brave and never complained, we donated his brain tissue and spinal cord for research when he left us , I am praying that his legacy will result in some hope for others especially younger victims .

    Keep in touch with all of us on this site , it really does help with coping with each day, all our thoughts are with you.

  • Hi MJ - new to the site and saw your post - My dad is in the late stages of PSP and I am more than willing to share his regimen with you.

    For PSP symptoms:

    Currently taking Sinemet (Dad has PSP-P vs. PSP-RS so sinemet gives him some relief)

    Amitriptyline -only at night (used to take Doxepin)

    Clonazepam -for muscle spasms -used to take valium early on

    Morphine -for pain but was on oxycodone prior and tylenol 4's before that -pain medication changed over time to address symptoms.

    Other to relieve side effects:

    Omperazole: heart burn

    Miralax: constipation

    Senna: constipation

    Multi-vitamin & vitamin C

    What we have tried with no effect:

    Trizanidine -works on a different area of the brain

    Baclofen -modest effect at first then stopped effectiveness

  • Hi MJ,

    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, it has only been 3 weeks, it appears mum's speech response time is faster, and she seems more engaging in conversation.

    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.

  • I may be a bit late to respond but Peter is on Amentadine, Mirtazapine (anti-depressant), thiamine and vitamin B. I have to say that he does not appear to have any side effects such as urine infection, tummy trouble etc. He still falls but I've noticed if he does not take the Amentadine, he gets very low and more wobbly.

  • We can't get any actual medication as Dr Archibold doesn't believe they help.

    I tried turmeric capsules with my dad (after reading successful reports) and they've been fantastic. His conversation and personality have come back.

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