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when to start meds


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#1 sandybette

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Posted 19 September 2013 - 07:57 PM

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?



#2 Marcia

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Posted 19 September 2013 - 09:55 PM

  • 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. 


#3 tooshort

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Posted 20 September 2013 - 01:12 AM

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!

#4 Carl Carter-Schwendler

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Posted 20 September 2013 - 02:53 PM

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.



#5 Jaxs1949

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Posted 22 September 2013 - 05:33 AM

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.



#6 sarahjo

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Posted 22 September 2013 - 10:44 AM

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



#7 metfan31

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Posted 23 September 2013 - 10:24 AM

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.

#8 sandybette

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Posted 29 September 2013 - 01:34 PM

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. 



#9 metfan31

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Posted 29 September 2013 - 07:35 PM

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!).

#10 metfan31

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Posted 03 October 2013 - 07:03 PM

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.




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