Questions


#1
Hello

New to the forum.My husband was diagnosed with pd nine years ago at 59.At first he was prescibed mirapexin which seemed to have a positive effect ,got taken off this after 2 yrs as had tendency to gamble etc which was out of character for him.Now on stalevo ( 6 daily) and has ever increasing freezing episodes and shaking. He is also falling asleep more than normal which I feel may be connected?

I sometimes feel the drug increases this as these much worse after taking tablet. Does anyone else feel this way who is on this drug? We feel we are getting no help from medical profession as daily life gets ever more difficult

Appreciate your comments.

J

#2
Hi. I'm very new here on the Parkinson's web-site and I'm very new on a computer. I sent a letter yesterday in the 'newcomers' but I can find no trace of it or a replies. I know it will be my fault, could you advise me please

#3
Welcome to the forum both,
you will find people on here very friendly and helpful.
My husband has had PD for thirty years now so we have been through many changes, he has not been on the newer drugs so I can't help you there but I am sure you will soon get some posts to answer your questions.
best wishes to you both
vivian

#4
Sonnym

I had similar problems and had to take less more frequently.

E.g. Initial Regime

9am 1pm 5pm 9pm
2xSinimet 2 x S 2x S 2x S

Changed to

9am 1pm 3pm 5pm 7pm 9pm
2xSinimet 1.5 x S 0.5x S 1.5x S 0.5x S 2x S

This worked for me it might not for him, plus I was not on the same meds. Discuss with consultant first.

I seemed to find I needed a bigger intial 'hit' to get started but delaying the half seemed to make it last longer with lessened side effects since I wasn't getting the full dose. Good luck.

pinkann

If you do a search for your name you'll find your posts and replies.

Select search from the menu on the left scroll down to the very end and put 'pinkann' in as the user and hit search.

Your playing a blinder.

#5
Hi Sonnym I was on stelivo and it put me to bed I could not function and had similar symptoms to your husband get in contact with your PD nurse or neurologist and they should advice you if not your GP could contact them if you are finding it difficult.:flushed:

#6
Hi pinkann

If you click on this link, you should see your post near the bottom of the page - http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=meet-and-greet&topic=in-which-we-introduce-ourselves&page=8

Best wishes
Dave, Digital team

#7
My husband was put on Stalevo a few years back with the words You will either come back to me saying "this is the best thing I've ever had" or" Why are you trying to poison me?"

It started off as the best thing but then gradually over a few days became poison.On the basis that there must be a reason for everything We reverted to Sinemet for a few days and tried again.(It was 6 months to the next appointment and no Parkinson's nurse to consult) The same thing happened. The good time was marvellous and we ended up with a regime of tapering off the dose over about 3 days, a short gap and try again. This was a pain to administer but done carefully produced a better result than Sinemet alone. A new consultant said it was simpler to increase the Sinemet and so it was but I filed away the idea that with careful administration Stalevo might beuseful in the future some time. I have a theory why it worked like that if anyone is interested.

#8
Hi Yellowbird
Was interested in your views on stelevo.My husband is on 6 daily & no other med for pd.Is sleeping after every dose and I really think that it is indeed "poison" to him.Would like to hear if anyone else has managed to work out what to do. best wishes, sonnym

#9
Hi Eck
Thanks for your story of changing your dose to less more frequently,dont know if it would work with stalevo but going to ask advice from p.nurse as one due to visit soon I hope.Best wishes

#10
Hi Mommah
Thanks for your reply,hoping to get Parkinson nurse to visit soon & see if we can get a result.Best wishes

#11
Hello Sonnym, and welcome. You will probably hear many so times that "We are all different and react differently to different medications" that the phrase will be ringing in your ears . But it is true.

About 3 years post diagnosis,I was prescribed Stalevo in addition to the Sinemet and Ropinerole that I was already taking. The result was that the dystonia (curling toes - very painful) became much worse and I developed dyskinesia ( Involuntary sudden jerks - not painful, but disconcerting). My GP took one look at me and advised that I gradually reduce the Stalevo dosage to 0 and gradually increase the dosage of Sinemet. My Consultant agreed. Apparently the Entacapone component of Stalevo was the culprit (or so it was decided). I was prescibed a muscle relaxant to control the dystonia.

I have never experienced periods of falling asleep - quite the opposite, The tremor that was my initial concern has reduced dramatically, except during times of stress.

It does say on the patient information leaflet that Stalevo may cause side effects that appear to increase pd symptoms. As has already been suggested, it is best to ask your consultant/PD nurse/GP. However, I do understand your feeling that you are not receiving much help. Even so, it is best to let them know what you are thinking re medication

Best wishes