Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
sandybette

when to start meds

Recommended Posts

I'm 66 & have been diagnosed for over a year, mostly on the basis of tremors (hand, chin) & occasional falling, though I've also had morning problems w/ low blood pressure, night problems w/ temperature regulation & insomnia.  My question is about when to start meds.  There seems to be conflicting advice - some say start right away, others say to wait until the symptoms are truly bothersome (especially because the meds have side effects like dyskinesia).  One doctor told me to start, another said to wait.  So - what do you think?

Share this post


Link to post
Share on other sites

  • My Neuro said to wait but when I went to a major movement disorder center they said to start. That my symptoms were significant enough.  nd I'd struggled enough to warrant it. So I went onto Carbodopa/Levo morning and lunchtime. It has reduced the symptoms and made my life better.  My concern was the lifespan of the drug. I was told not to worry about that now. Lots of advances are being made. by the way, I am 64 and was diagnosed in July.  I think I've had PD for over 2 years. 

Share this post


Link to post
Share on other sites

I was put on pramipexole 2 years ago for left hand movement . They have increased to .5 3x daily and I still shake and there's a little movement in my mouth along with a slight stiffness of gait so today they put me on senimet after weining me off pramipexole. The RLS is really bad tonite so I'm calling DR in AM to put me back on pramipexole or better yet Mirapex. Take the drugs if they relieve the symptoms. That's all we can do.I'm 66 and also fighting breast cancer but life is still good!

Share this post


Link to post
Share on other sites

I'm 44 and diagnosed in March.

 

I waited about six months and am now taking requip. For me it wasn't so much about the physical symptoms as it was staying clear-headed enough to work. Certainly it's better to wait if you can, because once you start you are in a world of balancing meds, waiting for them to kick in, and trying to decide if what you are feeling is a symptom, a side effect, or completely unrelated.

 

But, I'm glad I started. I feel more alive and generally happier. Since Parkinson's advances so slowly, you may not even be aware of how bad you feel. There is no reason to delay feeling better.

  • Like 1

Share this post


Link to post
Share on other sites

I started the Carbodopa/Levo right away.  My Neuro started with quarters moving to halfs, and now back to quarters.  My hands are quite.  Falling is still my biggest challenge, but  that hands and body shaking are much improved.  It is amazing to read how the Doctor's all seem to try different options.  No real set of rules.  I just hope Sandebette your doing well!  I enjoyed reading all the responses.

Share this post


Link to post
Share on other sites

I started right away, due to the fact I was having to step away from the things I loved doing, so once having the dx., and then starting meds. its helped a lot. bless you and good luck

sarahjo

Share this post


Link to post
Share on other sites

I am 33 and have gotten what I call a partial diagnosis(Dx), I have been told that it looks like PD and been put on Sinemet 25/100 to confirm Dx. Since it is clear to me that I feel so much better on the meds then before I am assuming that my next Doc Appt will result in confirmed/official Dx. In the past few weeks I have put a lot of thought into the very same question as I suspect the Doc will at least ask my input.

 

So to echo what was said above, I am not concerned about movement issues as I am having a clear head to keep working. It has been amazing to me how much better I feel overall these past couple weeks, and work has started to get easier for me again. So even considering I have at least half my life ahead of me, I would rather the benefits of the meds now while I can still provide for my family. I believe by the time Sinemet stops working, who is to say it isn't also due to the advance of PD and if not they very well might have other treatment options. If I were older I don't think I would feel differently, if anything I would be more inclined to seek treatment and make the most out of the immediate future, nothing is certain in this world, best to live in the moment.

  • Like 1

Share this post


Link to post
Share on other sites

Thanks to all who answered - sounds as though maybe the best thing to do is to try meds & hope that the side effects aren't too bad & that some new treatments come along quickly before the current meds don't work well anymore.  I see the neurologist again in Nov., & will ask for meds & see how they work.  Thanks again to all of you - I wish you the best & a positive outlook - we all need to keep hope. 

  • Like 1

Share this post


Link to post
Share on other sites

Don,

Sounds too good to be true. I'm pretty sure drug companies and PD organizations would be willing to give it some research if it were legit. What is your background? My money is on mad scientist, or internet prankster, but you could just be an elaborate con man. If I'm wrong I'll gladly pay $1,000s/yr your wonder drug will cost (after FDA approval!).

Share this post


Link to post
Share on other sites

Don, I suggest conversing with medical professionals instead of soliciting real people in real pain to be your lab rats and probably pay you... Start with ask the doc section of this website, they always respond.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×