So many medications

[Shakinginnc]

I am taking Sinemet 25/100 6 x times a day(I upped my dosage myself do to more frequent off times) along with 400 MG Gabapentin x 4 30MG Duloxetine x4 and two 0.5 Clonazpam at night! This doesn’t include the 2000IU vitamin D3 x2 ,20mg Nexium and 81 mg aspirin daily! I know other PWP take more meds than me and I shouldn’t complain but my Sinemet gets me down as even with taking them in short intervals I still have off times where my gait is lousy and my tremors are terrible also my whole body goes stiff! I tried to take 25/250 but I was vomiting up all my meds and was so afraid to take more which meant that I would suffer until my next dose and prayed I would keep that down! I am just so disappointed with all these pills and still not much relief, and am losing faith with my neurologist who just rushes in and out of my appointments and doesn’t seem to hear it heed my complaints . I am walking with a cane and was only diagnosed in 11/17. Does anyone have any advice that may help me reduce the amount of medications and still try to stay on an even keel? Sorry this is so long😳 Thank you in advance for any feedback you can offer🤔

[JohnPepper]

You are really taking an enormous amount of medication, and I feel very sorry for your situation. Are you aware that 'Off' periods are a side effect of levodopa medication?

May I ask, what benefits do you get after taking all those pills. Do any of them stop the shakes or make you feel better for a while?

[Shakinginnc in reply to JohnPepper]

I really don’t get much relief from my symptoms, not to say that I do have some not so bad days but very and I mean very few good days. I have read your bio about exercise and how well It works for you and am very pleased that you are doing so well! I have been trying some light yoga and (trying) to bicycle ! 😑 which is painful due to neuropathy in my feet and ankles and the terrible balance issues I have been experiencing.

[JohnPepper in reply to Shakinginnc]

Hi. Balance issues improve as you get stronger, but if you are unable to do regular exercise because of the neuropathy then it is going to be difficult for you. I am s sorry!

[Hidden]

You might want to consider Stalevo (levodopa, carbidopa and entacapone). This should extend your on periods. Vigorous exercise, when your body permits it, will also help. Many need multiple management regimes but we are all different in what will work and what is possible.

[Shakinginnc in reply to Hidden]

Thanks for the advice I will try to discuss the topic with my Dr. next month.

[Mezzomom1]

Have you asked your doctor about trying either the extended release Sinemet or the newer Rytary? I was taking 50/200 ER for quite awhile and had success. I'm now trying to get the dosing of Rytary right...tremors and stiffness are well controlled, but am getting dyskinesia in my right foot in the later part of the day.

Maybe you should see a different neurologist...that must be so frustrating!

[Shakinginnc in reply to Mezzomom1]

Thank you for replying. First off my husband greatly dislikes my Neurologist, he thinks she is a quack and is only interested in getting paid🤔 I have told her of my issues but she keeps saying that she would like to get me off my Gabapentin I take for my neuropathy (which IS something my husband agrees on!) and my Duloxetine that I take for nerve pain and anxiety and depression.

[Babowen898]

Hi, we, too, are from NC. My hubby takes 50/200 Extended Release Sinemet 5 times a day, two tablets each dosage. He tried the Rytary ER, and couldn’t tolerate it. He had difficulty with the regular Sinemet wearing off, but does well on the ER. His diagnosis has changed from Parkinsonism to PSP, to now MSA. He has only very slight tremors, but his balance is horrible, and he experiences much stiffness and freezing. He uses a walker at present. What part of the state are you from? I am guessing you may go to Raleigh Neurology? We started there but switched because of feeling rushed and always seeing a PA.

[Shakinginnc in reply to Babowen898]

Thank you for replying.I live near Greenville and go to a private practice there. Unfortunately private doesn’t always mean better! I will find another one after I finally get a hearing for disability, until then I just can’t start over time wise , emotionally or financially 😔

[Lynne1946]

Yes you absolutely need DBS. Best move I ever made !!!

[Shakinginnc]

Thank you for your reply. I have discussed with my DR. and she feels that I shouldn’t do it and my husband is afraid that It will cause more complications since I also have cervical stenosis.