If Sinemet doesn't work is it PD?

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sherwood
Regular Member


Date Joined Dec 2006
Total Posts : 111
   Posted 5/4/2008 9:28 AM (GMT -7)   
My husband was told last Nov he had PD. He found his right leg 'heavy' when he walked and his writing was difficult and almost impossible to read. He has had an op for ipingeement of right shoulder and his writing is improving. He was given Sinemet Plus to take. He started on 1/2 a tab daily and worked up to 3 a day. His consultant said that his symptoms would be less and he'd feel better etc. and that was the only way to definitely diagnose PD [if the meds worked]. Well they haven't improved anything one jot. On the contrary he has loads of side effects. Depression, tiredness, light headed, breathless. It goes on and on. He is now beginning to cut down the tablets to see what happens. What I wonder is has anyone else found that the tablets haven't worked? Should we go back to the Dr. If it's not PD was is it? Thanks for listening folks!

yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1280
   Posted 5/4/2008 6:25 PM (GMT -7)   
Definitely is time to see the neurologist.If sinemet does not help your Dr.should know this.Your husband needs to be very carefull about cutting back on sinemet,and should only do so under Dr.supervision.To do otherwise can cause severe medical complications.wishing you,and your husband the best.Do stay in touch with us.Ed
Ed-Moderator Parkinson's disease forum.
Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.Meds:Stalevo,Mirapex
 
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.


sherwood
Regular Member


Date Joined Dec 2006
Total Posts : 111
   Posted 5/5/2008 9:40 AM (GMT -7)   
Thanks. He has cut half a tab a day out. No difference with side effects yet. Will get him to make appt. I've just found out about DAT scans which are available in U.K. and will tell for definite if he has PD. Only worry is if the scan says no is that another can of worms opened?

lizzy4451
Forum Moderator


Date Joined Jun 2005
Total Posts : 332
   Posted 5/5/2008 11:12 PM (GMT -7)   
Sherwood,
Sinemet is often prescribed as a 'test' to see if one responds to it. Often times if the response is positive, the diagnosis is Parkinson's disease.

It sounds like your hubby did not have a positive response to Sinemet. Therefore, I would encourage his doc/neuro to investigate further. You are your hubby's best advocate. Educate yourself by reading, surfing reliable sources on the internet, and questioning the neuro/doc/etc. Ask, ask, ask questions. Learn. Share. Don't assume. YOU are the one in charge of his treatment options, etc. Make sure you are making an educated one (decision).
 
lizzy4451


Life is a dance. Don't sit it out.  ---- Jackson H. Brown

Post Edited (lizzy4451) : 5/5/2008 11:16:13 PM (GMT-6)


okbill
New Member


Date Joined Jun 2008
Total Posts : 2
   Posted 6/30/2008 1:18 AM (GMT -7)   
Perdue University has found the cause of a type of Parkinson's to be manganese toxicity, common in welders and miners. This type responds to a second-line tuberculosis drug, para-aminosalicylic (PAS) rather than conventional Parkinson's drugs. 1200mg daily of CoQ10 in divided doses may also be helpful. Ref: "Tuberculosis drug PAS may cure Parkinson's-like illness," Journal of Occupational Environmental Medicine, June 7, 2006, 15:37.

sherwood
Regular Member


Date Joined Dec 2006
Total Posts : 111
   Posted 6/30/2008 8:14 AM (GMT -7)   
Thanks for that info. Sadly he cannot attribute those reasons to his symptoms. We go to see his neurologist today as he has been off Dinemet for 2 weeks and no worse no better but SO down. We are going to ask to be referred for a DaTscan but think the neuro. may be resistant. In fact I think he will probably try and push a different drug at us. I am reading all I can and he is taking Coq10 but only able to tolerate 200mg a day without nqusea. Is also taking NADH 5mg a day. Problem i he has just withdrawn from the world, shows no interest in finding out things for himself and just seems to be ready for a sedentary life - fine if we were 70 or 80 but we are only 59!

yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1280
   Posted 6/30/2008 6:22 PM (GMT -7)   
Sherwood,let us know how your husbands neurologist visit goes.Wish you and your husband the best.
Ed-Moderator Parkinson's disease forum.
Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.Meds:Stalevo,Mirapex
 
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.


sherwood
Regular Member


Date Joined Dec 2006
Total Posts : 111
   Posted 8/22/2008 11:54 AM (GMT -7)   
We went to see a third consultant last night, the top man in this area and he gave same diagnosis. What he said was that maybe he wasn't given enough levadopa. It was enough to switch off his own production which is why he was so much worse but not enough to ease symptoms. I find that even scarier to think it's cutting his own body's production even more! Anyway he wants him to try rasagiline and if no improvement then he'll send him for DaTScan. He did say up to 10% of people do not respond to drugs and then we're really up the creek [my expression not his] This drug is so expensive it's had to be specially ordered by our pharmacist so heres hoping!

tiffanyfromfl
Regular Member


Date Joined Oct 2007
Total Posts : 21
   Posted 8/22/2008 7:34 PM (GMT -7)   
Hey everyone!  I am in the same boat.  I am not responding to any medication either.  I've been on sinemet, stalevo, mirapex all that stuff and nothing.  I am now about to start seligilene and requip.

sherwood
Regular Member


Date Joined Dec 2006
Total Posts : 111
   Posted 8/25/2008 9:15 AM (GMT -7)   
Has your neuro told you the same as us? Namely that you'd better hope one works. We were told originally that if Sinemet didn't work it wasn't PD. Now they say 10% of people don't respond

canuk
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 12/19/2011 1:55 PM (GMT -7)   
I have had PD for ten years now and have had no response to Sinemet. I was sent to a movement specialist 700 miles away in Vancouver as my neuro here was confused. He basically told me that I had a tremor intensive form and that I will eventually need to take Sinimet. So I am now more cofused than ever. We don't have a datscan here in Canada. Any suggestions?
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