I was diagnosed with PD eight months ago and was put on sinemet (12.5/50) three tablets 3 times daily. I still have some tremor and other problems. My worst are painful muscles when walking.
Today I saw a new Parkinson's Nurse and she suggested that an MAO-B inhibitor might suit me better ie Rasagiline or Selegiline.
I have an appointment with the consultant in two weeks time and am looking for questions to ask. Has anyone been on either (or both) of these and found them helpful? Did you have any side effects?
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Trenny
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I have been Dix for over 5 years now and started on sinimet, now on Co- beneldopa, and Rasagiline, we are all different and what works for some people may not work for others , it has taken me over 5 years to get some sort of medication that works for a short space of time , I see my Parkinson's nurse every 6 months and my neurologist the same amont of time , they will work with you and help you get the best medication that will whelp you,
Regards painful leg muscles......check with Physical Therapist....Stretching exercises indicated for Joint flexing muscles and strengthening for joint extension muscles. Important to maintain ankle, knee and hip joint flexibility.
I tried Rasagiline but it made me nauseous. Sinemet and Azilect work though. I do yoga and tai chi classes and walk as much as possible. I go to an osteopath monthly to try and maintain my body in as good a state as possible. Good luck.
Azilect IS Rasagiline. I was diagnosed last November but probably have had it for three years and the Azilect seems to be working really well without side effects for me
I was diagnosed last November but probably have had it for three years and the Azilect seems to be working really well without side effects for me
I agree with daily Magnesium. I think I'm taking 250 mg a day and stretching would help yes
My husband's Mayo doc ordered him off Selegiline. Said he didn't like it generally. Can't say getting off it made a difference, one way or the other. He never tried Azilect, though it was talked about at one point.
I do selegeline 10mg a day. I think it does the 'heavy lifting' for me, however I am going to do a vacation from it soon to guage where I am at. Most Dr.'s do not prescribe it (I think because it is an old drug and not the shiny new car on the block that Azilect is) Azilect/rasageline gave me palpitations..
My husband has delusions and hallucinations constantly as well as violent night terrors, He is on Stavelo and is in advanced stages of PD. He was given clonipin a couple of months ago to help with night terrors and help with sleep to no avail.,
My husband has taken Silegiline for 20 years and wouldn't be without it. It was at one time believed to slow down PD. I don't know about easing aches and pains but my husband has never suffered with depression unlike some PD sufferers and thinks it may be because of Silegiline.
My husband who is only two years after diagnosis has been on Silegiline for a year now and while obviously I can't tell if it's slowed the progression of pd I agree with your idea and really think it's helped with the depression totally, plus no side effects. Before this he tried madopar and sinemet and got really ill in both so grateful we're on an even keel for the time being.
Depending on whose list you believe, there are five or six categories (or classes) of PD meds: Dopaminergic drugs such as Sinemet and Stalevo, Dopamine agonists such as Mirapex and Requip, COMT inhibitors such as Entacapone and Tolcapone, MAO-B inhibitors such as Azilect/Rasagiline and Eldepryl/Selegiline, Anticholinergics such as Cogentin and Artane, and “other drugs” such as Amantadine/Symmetrel. At one time or another over the last ten years, I have been on one or more drugs in each category except the Anticholinergics, which, it is generally agreed, are to be avoided by individuals age 70+ (that would be me). Currently my “cocktail” includes both Stalevo and Azilect, with no noticeable side effects. Of course, we do not all react the same to the same drug, nor do we necessary react the same today as yesterday or tomorrow. Good luck!
I had not heard of Stalevo before and wonder if that is a substitute for Sinemet? My husband was diagnosed at around age 39 and is now almost 59. The Sinemet had worked well for him for many years but it now seems to be "hit or miss", and when it does work, it only lasts about an hour. When I saw your post I looked up Stalevo and it has a 3rd ingredient. What is that supposed to do? Had you taken Sinemet in the past and if so, why did you switch to Stalevo? My husband did add Mirapex just before the holidays which helped significantly - especially with his leg pain- but causes nausea, so he doesn't take the noontime dose. My husband has the severe tremor form of PD, with rigidity, but he still can walk and take care of his basic needs. Just is uncomfortable much of the time. Thanks in advance for your reply!
Stalevo is Sinemet plus Entacopone (a COM-T inhibter) so you could stay on whichever Dopamine replacement drug that you like and add Entacopone. An alternative but functionally the same as Sinemet is Madopar. The generic form of Madopar is co-beneldopa.
I think the second ingredient of Madopar or co-beneldopa is is Benseraside (functionally the same as Carbidopa in Sinemet) but not licenced for use in the US. So I would not expect to see Madopar or Co-beneldopa being prescribed there. I could be out of date I suppose?
In my experience Entacopone does not dramatically effect the keeping Dopamine available for a prolonged period. Also I am told that Entacopone is rather expensive. So for our friends over the big pond may prefer to direct their finances at alternatives.
I had not heard of Stalevo before and wonder if that is a substitute for Sinemet? YES. LIKE SINEMET IT CONTAINS BOTH LEVODOPA AND CARBIDOPA BUT UNLIKE SINEMET IT CONTAINS A THIRD DRUG – A COMT INHIBITOR CALLED ENTACAPONE. My husband was diagnosed at around age 39 and is now almost 59. The Sinemet had worked well for him for many years but it now seems to be "hit or miss", and when it does work, it only lasts about an hour. When I saw your post I looked up Stalevo and it has a 3rd ingredient. What is that supposed to do? THERE ARE CERTAIN NATURAL ENZYMES IN THE BRAIN WHICH BREAK DOWN DOPAMINE. ENTACAPONE, THE 3RD INGREDIENT, BLOCKS SOME OF THOSSE ENZYMES AND PROLONGS THE EFFECTIVENESS OF THE DOPAMINE. Had you taken Sinemet in the past and if so, why did you switch to Stalevo? YES I HAD TAKEN SINEMET IN THE PAST BUT WHEN I BEGAN EXPERIENCING END OF DOSE WEARING OFF I ADDED AN ENTACAPONE PILL TO MY COCTAIL. I LATER SWITCHED TO STALEVO BECAUSE, SINCE IT CONTAINED THE ENTACAPONE, IT MEANT ONE LESS PILL FOR ME TO TAKE. My husband did add Mirapex just before the holidays which helped significantly - especially with his leg pain- but causes nausea, so he doesn't take the noontime dose. My husband has the severe tremor form of PD, with rigidity, but he still can walk and take care of his basic needs. Just is uncomfortable much of the time. Thanks in advance for your reply!
BTW, are you sure it is the Mirapex causing the nausea? It is common for Levodopa to cause nausea, which is why virtually nobody takes straight Levodopa, it’s almost always combined with Carbidopa which reduces Levodopa-caused nausea and vomiting. For some people, the amount of Carbidopa in a Stalevo or Sinemet pill is not adequate to combat the nausea, so an additional Carbidopa pill is added. That was me. I added Lodosyn, the name brand for the generic Carbidopa.
Hope this helps.
Cordially,
Espo.
Trenny Hi
One thing you might ask is what eactly your medication is expected to do. I went for years thinking that Stalevo would halt or calm down my tremor. In fact it doesn't do that but it does help with rigidity and slowness of movement. Make sure your consultant is clear on points like this. Also try and find someome who will give you an exercise regime and stick with it until you find something better. In the meantime keep hoping. There is a vast amount of research going on into PD right now including a great deal of crossover from other ailments and other drugs.
Regarding grey-stones8’s report that Stalevo “does help with rigidity and slowness of movement,” but that “In fact it doesn't halt or calm down my tremor.” Keeping in mind that not all of us respond the same way to the same medication, the patient advisory that came with my Stalevo reads, in part: “[Stalevo] is used to treat Parkinson symptoms such as muscle stiffness, tremors, spasms, and poor muscle control.”
Hi Trenny. I was put onto an MAO-b inhibitor for eight years, from 1994 to 2002, at which stage I was able to come off all Pd medication. The MAO-b inhibitor played a big part in this, together with fast walking, stress management and Brain exercise. Look at my website - reverseparkinsons.net for more details. There is a lot more we can do than taking medication to help us overcome the effects of Pd!
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