Medication - 'Requip'

[SharonAB]

Has anyone with PSP tried this medication or something similar? Medication and its side effects has always been a concern of mine and it is 'yet' another medication that had been suggested to my husband to try.

[peterjones]

SHARON AB WELL MATE I HAVE NEVER HAD ANY MEDICATION FROM MY NEUROLOGIST

HE HAS NEVER OFFERED ME ANY AND I HAVE NEVER ASKED FOR ANY IS THIS STRANGE

WHEN I FIRST SAW HIM HE TOLD ME THERE WAS NOTHING THAT WOULD CURE PSP SO I SAID OK FAIR ENOUGH AND LEFT IT AT THAT NOT THAT I WANT TO TAKE ANYTHING ANYWAY I STILL HAVE MY SHARE OF FALLS AND MY SWALLOWING IS NOT TO BRIGHT

AND MY SHOULDER IS PLAYING UP BUT THAT MIGHT HAVE BEEN FROM ONE OF MY FALLS OH AND I LOOK A BIT VACANT AT TIMES BUT I KNOW WHATS GOING ON AND MY LEGS OR FEET FREESE UP STILL BUT APART FROM THAT I FEEL FINE AT PRESENT

BEST WISHES TO ALL PSP SUFFERERS KEEP YOUR CHIN UP AND YOUR BEST FOOT FORWARD PETER JONES QUEENSKLAND AUSTRALIA PSP SUFFERER

[Hidden]

Requip is a dopamine agonist and used in Parkinson's. It has some very bad side effects (long lasting) for many people, both taking it and abrubtly stopping it.

Since Parkinson's is mainly a dopaminergic neurotransmitter problem, and PSP has many neurotransmitter problems (dopamine being only one, and possibly of a different nature to that in Parkinson's), then such medication as Requip has been shown to have no or little effect.

Like Peter Jones, our neurologist does not prescibe any medication for PSP.

When one looks up the side effects for this drug, then one has to be prepared for the possibility of one or more showing up. Not all PSP sufferers will have side effects, but I am aware the vast majority do!

The following is just my opinion and may have no scientific basis........

I am always concerned when medication that is supposed to help the brain when it becomes deficient in dopamine (or the receptors are not working efficiciently), is then used on brains that have multiple neurotransmitter problems. Such brains are already in a high state of "stress" and pathways are being activated and deactivated incorrectly in PSP, so throwing in extra neurotransmitter compounds may be asking for trouble. To put it colloquially in the old fashioned English term, the brain won't know if it's Arthur or Martha!

[Hidden]

Quick post-script

The colloquial term I mentioned above was used in my home town as "being in a state of confusion" and had nothing to do with the term being used in the modern day context of something else (that I will not specify on this forum).

[shasha in reply to Hidden]

HA HA STRELLEY - HOW VERY CLEVER AND DROLL YOU ARE ...

I MAY HAVE TOLD YOU THAT MY NEURO GAVE ME MODOPAR FIR MY NECK PAIN AND IT SEEMS TO WORK

[Hidden]

Hi Shasha

Good to hear from you. Glad to know Madopar is helping with your neck pain. Neck pain (even dystonia) is common in PSP, in fact, PSP's other name is nuchal dystonia dementia (nuchal meaning neck).

I always sound like a bit of a worrier when it comes to medications, and I know side effects do not occur in every person taking Madopar, but this statement from it's list of side effects may be worth considering (i.e have a regular check up now and again) .....

"You should have regular tests to monitor the function of your liver, blood, kidneys and heart while taking this medicine" (not my words, but advice from the Netdoctor).

Take care and all the best.

[Macd]

Hi My wife had PSP for 8 years plus and had been on Requip to prevent restless leg syndrome (2 pills at night before bed) with no side effects. She was also taking non genetic Sinamet for 6 of those years with no side effects. I believe that the Sinamet did ease the and helped her to live a comfortable life (Sinamet 8 pills a day every 5 hours or so).

Good luck

Richard

[marytea13]

I am having painful head problems that nothing seems to relieve hot pack liquid panama x + incontinence bladder + bowel - I see my GP Tuesday & Dr Rick S tell Wednesday - I have transferred to him! Meanwhile I cannot get to physio or to play Bridge. Is This the beginning of the end? Mary

[SharonAB in reply to marytea13]

Mary, keep us up to date - heard of Dr Rick Snell -through some good on-line readings - Regards, Alana

[marytea13 in reply to SharonAB]

Yes Sharon I saw him last year but on referral from Kermode now I have transferred to Stell & see him Wednesday Mary

[marytea13 in reply to SharonAB]

yes saw Rick Stell yesterday He had been on call @ Charles Gardiner - then an emergency so was late but got secretary to phone me just as we were arriving @ SJOG Subiaco but when he examined me he agreed I had a neck problem so sent for special x-ray + blood test only got time for X-ray as they had closed their banking! He still not certain I have PSP! My diarrhoea is settling but I want to go get a probiotic S Boulardi that I have used previously. Report back! Cheers Mary

[SharonAB in reply to marytea13]

Keep smiling Regards, Alana -

Curious how old do you think Rick is - As I also recall Dr from about 25 years ago - related to some work he was doing through Sir Charles Gardiner way back then!!

[marytea13 in reply to SharonAB]

I will try again to reply - Sharon done several times but either does not go or cut off! My husband reckoned Rick was late 40s or early 50s, inaction with Rick is good. I had my x Ray but too late for path as banking had closed! I will get it done @ Mercy where there is a lab on site. Rick was talking off injections around the back of my neck. I have forgotten to tell him I had injection into C ganglion when I had complications of carpal tunnel release. That was for pain given by Anaes. & worked but now it seems I may need something again. On a brighter side went to Concert Hall last night with hubby for marvellous concert. "Harold in Italy" music by Berliouz Bizet Faure just a few of composers. Cold clear night. Mary

[SharonAB in reply to marytea13]

the concert hall has beautiful acoustics. Very happy to read you enjoyed the evening. Rick was my father in laws neurologist.

Alana xxx

[marytea13]

If the Tallis scholars come to Perth again & have a concert in the Concert Hall its not to be missed - they + acoustics in Perth Concert Hall are not to be missed I would go again! Cheers Mary who played bridge to day & did ok!