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Rainbow

Parkinson and treatment drugs

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Hello Everyone,

My mom is a newly diagnosed PD patient and using Pramipexola (0.375 mg) and Zoloft(25 mg) Is there anybody who uses these drugs? What other drugs are you using besides or other than these drugs? Is there anybody on Rasagiline as a newly diagnosed patient. My mom was diagnosed in last July.

Also what type of exercises and how long do you do it?

Do you prefer cardio/high intensity exercises or low intensity, like walking 30 mins a day? Which one is more beneficial?

Sorry for a lot of questions, just trying to figure out what is best for my mom at this moment.

Looking forward to hearing your type of treatment plan!

Thank you for your time!

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- Sorry that your mom is now diagnosed w/ PD, but it seems like you'll be a good support for her.  I, too, was started on pramipexole (currently taking the extended release formula once a day @ 3 mg. level), and I also used rasagaline (1mg. once a day), but, now that I've hit the doughnut hole for Medicare drugs, it's too expensive, even for the generic, so I'm quitting that.  A friend, who is a neurologist, (not the neurologist I use) feels that it's worthless anyway.  My neurologist says that there was debate about whether it had some neuroprotective effect, but it's OK to stop, and, if the symptoms get worse w/o it, he'll either increase the dose of pramipexole or start some levadopa. I exercise really vigorously every day except for one day of rest - an hour every morning - 3 days a week on the elliptical for 30 min. + floor exercises, then 3 days a week on fitness strength machines + nu-step + 10 min. of elliptical.  It's all hard enough cardio/high intensity  to get sweaty, make it tricky to carry on a conversation, etc. - but, my PD really hasn't progressed much in the 5 yrs. since diagnosis @ age 65 or so - and my neurologist feels that the exercise is why.  (I used to run 3 miles/day, but, living in FL heat/humidity, I can no longer do it, and had trouble w/ my feet on the treadmill, so it's the elliptical now.) His philosophy is to treat exercise like a drug, & don't skip a dose.    I wish you & your mom well - tell her to just keep moving! 

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Thank you so much sandybette. I just want to print out your answer and read it to my mom everyday because somebody (not a doctor/, she met at a shopping place) told her not to exercise very hard, and she was just doing her 30 mins walk. I know that exercise is so important too.  Her doctor told her I don't recommend rasagiline at this moment because it interferes with antidepressants.

Thanks again and I am so glad that you are doing fine.

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I just want to comment on Azilect (Rasagiline).

I was diagnosed in 2014 and have been talking nothing but Azilect. My Neurologist (MDS) on June 27 told me my progression is slow/delayed by daily exercise routines and Azilect.

I shake my head when I read Azilect  does nothing. Tell that to my symptoms or lack of!!

D

 

 

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Educate yourself. Reach out to the ask the pharmacist forum. Exercise is key! There's lots of PD specific options.  I do a program called PWR! (www.pwr4life.org) & take dance lessons. Find something she likes! 

 

Good luck

 

LAD

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20 hours ago, Rainbow said:

Also what type of exercises and how long do you do it?

Do you prefer cardio/high intensity exercises or low intensity, like walking 30 mins a day? Which one is more beneficial?

In my opinion, the key is to keep moving.  For example, I don't like the idea of walking 30 minutes a day, if the rest of the day is spent sitting on the couch.  I don't like the idea of an hour of cardio, when a person has a Handicap sticker and parks as close to the store as possible.  I think that battling PD requires a lifestyle change that means the patient will take every available opportunity to move throughout the day.

When I go to the store, I park as far from the store as possible.  I will usually walk a lap or two around the big box store before I begin shopping (each lap around Walmart is almost 1,000 steps.  I own a business and have a massive number of bills to pay each month.  When I pay bills, I pay one bill at a time and then take each receipt to the basement to be filed.  I make a trip around the basement and do one exercise with each trip.  I often have over 100 flights of steps a day.

I'm not saying don't do organized exercise.  Quite the contrary, I think participating in organized PD exercise is very valuable.  What I'm saying is that in addition to whatever PD exercise program(s) you do, you also need to move all day long!  Move it or lose it!

 

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Thank you so much for the valuable information. That really makes sense. Exercise is not like your homework, we can't say, hey let's finish it quickly in 30 minutes then we can do what ever we want for the rest of the day.I don't think this will improve PD. Being as active as much as possible is the key to defeat that disease.

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15 hours ago, Discovery said:

I just want to comment on Azilect (Rasagiline).

I was diagnosed in 2014 and have been talking nothing but Azilect. My Neurologist (MDS) on June 27 told me my progression is slow/delayed by daily exercise routines and Azilect.

I shake my head when I read Azilect  does nothing. Tell that to my symptoms or lack of!!

D

 

 

Hi Discovery, Are you using any kind of antidepressants besides Azilect(Rasagiline)? I have read there might be interractions between Rasagiline and SSRI antidepressants. I was just wondering that. My mom is currently on a very low dose sertaline (25 mg) and we were wondering if she should ask  her doctor about using azilect. Can she use azilect while using antidepresants? Is there any other side effects of azilect? Thank you!! Looking forward to your answer about that.-Rainbow

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I am on Azilect and one 81mg aspirin daily, that's it. I have never had side effects from Azilect however I have read from some on the forum who have. Ask your pharmacist regarding the drug interaction, it's important to have that info.

I wish you all the best!

D

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Thanks so much Discovery!! We will definitely check with a pharmacist and her doctor too. Her doctor did not recommend beacuse he said azilect is interfering with antidepressants. But she is on a very low dose sertaline 25 mg and if the doctor recommends to quit that medicine, maybe she can start using azilect. I have read so much benefits and also read it delayed another person's PD as well. So why not use it? In my opinion antidepressant are important too but if you are mentally feeling fine and you need to sacrifice one medicine, it should be Sertaline, not Azilect!! Hope doctors can understand that help my mom. Thanks again for a quick reply!!Hope you feel better everyday.

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Rainbow,

One thing I have learned in the past 3 years is to do what works for you. The Forum is a great place for info and chatting with others in the same space.

Though at the end of the day we are all different in our progression and mind set. My beliefs will be different from the next who is exactly where I may be in the disease symptoms  but chooses a different path. 

I am a strong believer in exercise and a healthy mental state. If you lack in one the other won't survive.

I sense that you are a caring daughter one that will do what it takes to keep Mom healthy. I admire that kind of love.

All the best

D

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7 hours ago, Discovery said:

Rainbow,

One thing I have learned in the past 3 years is to do what works for you. The Forum is a great place for info and chatting with others in the same space.

Though at the end of the day we are all different in our progression and mind set. My beliefs will be different from the next who is exactly where I may be in the disease symptoms  but chooses a different path. 

I am a strong believer in exercise and a healthy mental state. If you lack in one the other won't survive.

I sense that you are a caring daughter one that will do what it takes to keep Mom healthy. I admire that kind of love.

All the best

D

Well said!!!

 

LAD

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On 8/23/2017 at 11:08 AM, Rainbow said:

My mom is a newly diagnosed PD patient and using Pramipexola (0.375 mg) and Zoloft(25 mg) Is there anybody who uses these drugs? What other drugs are you using besides or other than these drugs? Is there anybody on Rasagiline as a newly diagnosed patient. My mom was diagnosed in last July.

Also what type of exercises and how long do you do it?

Do you prefer cardio/high intensity exercises or low intensity, like walking 30 mins a day? Which one is more beneficial?

 

Hi Rainbow,

My DH (dear husband) was diagnosed in July 2016 (on the 8th to be exact- I'll never forget that date - ha!).  Specifically for PD, he currently takes Pramipexol (1.5 mg) and Rasagiline.  He had been taking Sertraline (5 mg) for a number of years before the PD diagnosis and still does.  He also takes a number of other OTC supplements and Rx 's for non-PD-related conditions we've been managing, some for over 10 years.  We try to look at PD as just another part of life and we'll manage that too in ways that keep us enjoying and appreciating life.

You're doing a GREAT job asking questions and continuing to evaluate the information you receive to help your Mom design and implement the best plan for her.  If you can, find an MDS to add to your management team and ask them lots of questions too.

The other responses from the excellent folks in this forum are spot on.  Exercise is the key to a healthy and happy life for anyone - PD dx aside.  Incorporating exercise into daily routines and staying moving throughout the day is perfect along with specific activities designed for (safe) cardio exercise along with balance and  flexibility improvement.  Your Mom will have to find what works for her that she will commit to and persist doing even when "she doesn't feel like it".  Lack of motivation can be exacerbated by PD so helping her design something she will stick with is key and again, if you can, add some social interaction (do it with her, have her join a group, etc.)   Social interaction is good for mental stimulation and improved brain plasticity.  But as everyone here has said - your Mom's experience and her management plan will be unique to her.

Keep up all the good work and remember to take care of yourself too.

All the best.

LHG

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Thanks Lonnise! It is good to know there are some great people here helping each other. I appreciate your time and ideas. Hope your husband feels better too.

 

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Hi Lonnise,

Sorry for another question. Is it 5 mg of Sertraline or 50 mg of Sertraline?

Just wanted to be sure. My mom is on 25 mg of Sertraline.

Thank you!

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On 8/24/2017 at 0:29 PM, Discovery said:

Rainbow,

One thing I have learned in the past 3 years is to do what works for you. The Forum is a great place for info and chatting with others in the same space.

Though at the end of the day we are all different in our progression and mind set. My beliefs will be different from the next who is exactly where I may be in the disease symptoms  but chooses a different path. 

I am a strong believer in exercise and a healthy mental state. If you lack in one the other won't survive.

I sense that you are a caring daughter one that will do what it takes to keep Mom healthy. I admire that kind of love.

All the best

D

You are like Grandmaster Oogway  From Kung Fu Panda.  So wise!  :)

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Miracle, wise I'm not sure about that! Lol

However I'm tired of others pushing their "opinions" and "no that won't work" or "what, your not on Sinemet yet, big mistake"

I am the only person who will make my choices. If my choices are wrong it's on me. If they are right it's on me.

This insidious disease is hard enough on us, having people nattering in our ears makes it down right impossible to keep in our lane of sanity.

I play hard, laugh loud and love always. ...this keeps me afloat.

Cheers MS?

D

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On 8/24/2017 at 6:43 AM, Discovery said:

I am on Azilect and one 81mg aspirin daily, that's it. I have never had side effects from Azilect however I have read from some on the forum who have. Ask your pharmacist regarding the drug interaction, it's important to have that info.

I wish you all the best!

D

I'm sure there are others, but I am one that had that bad reaction to Azilect.  In Rainbow's thread in the Open Forum I briefly mentioned it, but will detail the reaction again here.  Bear in mind as you read the rest of my post below that my reaction is fairly unusual.  Not unique by any means, but I'm in a pretty small minority from what I understand in terms of how I reacted to Azilect.  As others have mentioned, do what works for you and your mom.  Just take the tale below as cautionary with respect to what some medications can do to some people, and watch out for similar reactions in your mom, just in case.

 

Shortly after my diagnosis (9/30/15) my MDS wanted me to try Azilect.  I had already been on C/L (shorthand for Carbidopa/Levodopa, aka Sinemet) for over a month.  She had me try C/L as part of the diagnostic procedure and I haven't stopped since.  Anyway, her hope was that by adding Azilect that I might be able to reduce or maybe even quit the C/L as the whole idea behind Azilect is that keeps the dopamine in our brains around for longer.

 

So, in mid-October of that year I started taking Azilect.  It had seemingly little effect at first.  After a week and half, maybe 2 weeks though I started to notice some changes.  But they were not the good kind.  I was getting more agitated, and not reacting entirely appropriately to some people.  I started to have short term memory loss.  I was on a business trip to Detroit when this got started.  I was forgetting really simple things, like where the card key for my hotel room was, or where I'd put my driver's license.  It was really quite a disturbing experience.  

 

But what really started to freak me out was when I realized I was starting to hallucinate.  They were minor hallucinations, things like seeing flashes of light or darkness that weren't really there.  Feeling like there was a bug crawling on my arm when I could visually confirm nothing was there.  As far as I know it never went beyond that.

 

As soon as I told my MDS about that she immediately ordered the withdrawal of that medication. 

 

It's really too bad as if it really does have neuroprotective effects I'd like to take it and keep my mind and body sound for as long as possible.  Though, it is rather expensive.  I never got to the point of finding out how much, if any, my insurance would cover it, but if you don't have coverage I do know it is (or was at the time - IIRC there's a generic version available now) quite pricey.

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Thank you Stump for the side effects information. It is always good to know. My mom will ask her doctor in two months when she sees him. She still has some tremor in her hand and it is bothering her. She is hoping to have some positive effect by using Azilect since it might have some protective  effect. Did you try using that medicine for two weeks? I read somewhere our body might adjust itself after using that medicine for two weeks but if the side effects are severe  or you can't put up with it, you definitely did the right thing to quit. Also your doctor told you stop so it is not questionable I believe. Well thank you and I will let my know about that.

 

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I had held off on starting because I had hernia surgery right after I got the Azilect samples from my doc.  Some anesthesia and pain killers interact badly with Azilect so I waited until I was recovered from that before starting.

 

I took Azilect for 3.5 weeks.  The disturbing side effects started after the 2 week mark, and they totally went away within a week of stopping.

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MDS stands for Movement Disorders Specialist. It is a neurologist who has had extra years of specialized training in treating patients with PD, ALS, and other movement related disorders. They are much more knowledgeable than a regular neurologist.

You can call the NPF Hopeline (listed on the NPF home page) and ask if there is one near you. They are often affiliated with large medical centers and Universities.

Dianne

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On 8/26/2017 at 10:39 AM, Discovery said:

I play hard, laugh loud and love always. ...this keeps me afloat.

 

Ha!!!! Me too! Love ya, D.

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