HealingWell
Search Close Search
☰

Ready for meds after 4 years, questions!

Support Forums
>
Parkinson's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/17/2007 7:30 PM (GMT 0)
Hello, I was diagnosed almost 4 years ago at the age of 41.  Up until now it has progressed so slowly that I am still not on any medication.  Even though I feel I should have started some meds months ago (handwriting unreadable, tremors worsening) I have been very stubborn about it because I'm so worried about the extreme fatigue that comes along with the medications.  I work as a secretary at a desk all day and I know I would probably nod off!

My doctor gave me samples of Azilect and said it was pretty mild, but I haven't tried it yet.  Does anyone have ANY advice on what medication I should start with?  Something that won't put me to sleep?  I'm desperate.   confused   Thank you!

Posted 4/17/2007 9:17 PM (GMT 0)
I have a lot of patients on Sinemet who do not complain to me about fatigue. I will be meeting with my local PD group here this week, and will ask around. Courtney
Posted 4/18/2007 3:28 AM (GMT 0)
In the early stage of PD, they usually prescribed Mirapex to delay the progression of the disease.  As much as possible they delay the use of Sinemet because of its side effect. To some, Mirapex makes them sleepy. For me, it's working ok. I've been taking this since 1997. I have PD for 16 years but still smiling. Positive attitude is the key.
Posted 4/19/2007 7:01 PM (GMT 0)

Sandal

I too did not start on medication straight after diagnosis but gradually came to realise that I needed it when the tremor in my left hand was uncontrollable.  I started on a low dosage of sinement and have maintained a low dose over the 6 years that I have been on meds.  My reason for this is because I do not want the side effects that are a consequence of long term use of levadopa.  I believe that it is the PD that makes us tired and not necessarily the meds, although certainly they will have some effect. Like you, my handwritting is absolute rubbish. I cannot write even a short sentence that is readable.  Theres not much we can do about this.  Thank the Lord for the keyboard.

Good luck

BILLY 

Posted 4/23/2007 12:16 AM (GMT 0)
Sandel
I was diagnosed 5years ago at 48. What a blow! I was put on Mirapex, good choice. The tremors became less. I work with children and they were noticing.
A year and a half ago I could barely walk 20 feet. My son was getting married in Hawii and I was going! On my husbands insistance I went to a new doctor he put me on Sinemet. This was over Christmas break. When I went back to work my students were amazed. They said I can catch them now. I can now keep riding my horse go hiking and anything I want to do. Go for it! Don't worry about being sleepy you will be so happy your energy level will keep you awake.
fiestytex
Posted 4/24/2007 5:56 AM (GMT 0)
I too was started on an dopamine agonist first - Mirapex.  I has some side-effects that were problematic and switched to Requip.  Both of these drugs are in the same class.  Agonists can cause fatigue and sudden sleepiness. It is important to take care when you first start them - I know more than one person personally that fell asleep at the wheel driving due to being on a dopamine agoinst.  Agonists help keep the dopamine your brain is manufacturing from breaking down quickly - it slows down the deterioration process.  Sinemet, however is a dopamine replacement (l-dopa) and is usually started after agonists are no longer doing the trick. Many neuros use a combination of an agonist and Sinemet. Sinemet has never caused major fatigue for me - even at extremely high doses.  The warnings about impulsive behavior changes while on dopamine agonists should be taken very seriously.  These medication DO cause frequently changes in implusive behavior. It is not just a rare warning that almost never happens.  It is very real and if you notice a change is your behavior - discuss it immediately with you physician.  I know several friends that start having some compulsive behavioral changes that were not charateristic for them.  We laugh when we read about people starting to gamble, become hyper sexual, petty theft or uncharacteristic stealing, getting involve in cyber **** or unusual compuslive activities - but it is very real and we need to be aware that these medications can be the trigger.  When we begin taking these meds, we have to monitor our behavior closely in the beginning for any changes. 
Posted 5/1/2007 7:07 AM (GMT 0)
Sandal,

I agree with Stella Marie's comments regarding the dopamine agonists - Mirapex and Requip. You've probably gathered by now that everyone's response - both positive and negative - to any particular medication is different. You have to weigh the benefit and cost to you.

 

I am a proponent of trying anything but Sinemet initially. That usually is a dopamine agonist - like Mirapex or Requip -  or something in the Mao -(b?) inhibitor family - like selegiline or the recently-FDA-approved azilect aka rasagaline. As a person with young onset PD, I prefer to exhaust those options before starting Sinemet or Stalevo (Sinemet plus Comtan).

 

Several folks here have had successful results with Sinemet. I have never taken Sinemet, so I can't offer the same testimonial. I have, however, seen the significant side effects that Sinemet causes. Sinemet is often most effective for 5 years. After that period of time the side effects increase and become more significant than the disease itself. Michael J. Fox is an example. His 'swaying' or 'wiggliness' is not PD ... it's a side effect of Sinemet.

 

Everyone has different requirements and respond to meds differently. The most important thing is to educate yourself. You are your own best advocate. No one cares about you like you do.

 

Best of luck to you on your journey,

lizzy4451

Posted 5/1/2007 7:56 AM (GMT 0)
Hello Sandal, lizzy, Billy and the rest talk much sense and also listen to Yakkimo. pd affects all of us in different ways and at different rates, likewse all the various medications. Being in the UK I am on a med that isn't available to you but when the time comes to moev up thescale I will be incredibly prepared to discuss the various meds and how they can affect an individual just by listening to what everybody has to say on this site. It's an educaton. By trying to stay positive I'll have the attitude 'it won't happen to me' when it comes to adverse effects - until it does. Billy has a very good point whenhe says that it s the condition that makes us tired as much as any medication and lke him I will try and trade a little bit of lousy feeling now for a lengthened drug life at the other end. It was the tiredness that eventually forced me to admt defeat in going as far as I could without medication [and the tremor]. It may not work out that way but at least we can give t a good run. What I do believe though iis that whatever route we go down we do it with our neuro and not without him/her. Heed the warnings about side effects but don't assume - as with any drug for any condition they mean that different people have posted dfferent reaction to taking them.
Hang in there and good luck
The Bear
Posted 5/1/2007 11:19 AM (GMT 0)

I have been on levodopa in one form or another for about 7 years,I am still on a relatively low dose.There have been studies done which indicate that levodopa may in fact slow down the progression of PD,one in particular reported in the Dec.9 2004 issue of the new england journal of medicine.If you google Using keywords levodopa slows progression of parkinson's disease you will find plenty of info.

I am not endorsing levodopa,but wish to point out that conflicting points of view exist with the use of levodopa.We all react differently to a given drug.In my case I can lead a fairly active life thanks to levodopa.The question I had to make was when to start taking levodopa???? A question all with PD eventually face,and I don't envy any of you it is a tough question.The way I approached it was well I can try it ,and if it doesn't work I'll stop taking it.Well I never stopped.First I had to accept the fact that I had a progressive neurological disorder,and that took several years,and about 6 neurologists that I saw before the acceptance part kicked in.Next I went on line to talk to as many pDers' as I could locat,and even started my own website.I have since had to discontinue the website.

One thing ,and the most important thing that I have learned  ,from talking to hundreds of pDers' over the years,is that we all progress at a different rate,and all handle any given med differently.For this reason I don't recommend or discourage the use of a drug to anyone .I only relate my experience with it.

Last but not least I would like to thank all for their helpfull input,and contributions to making this a helpfull  support site.Wish all the best.Ed


Posted 5/1/2007 1:00 PM (GMT 0)
Thank you so much everyone for your input and advice, it means a great deal to me.  I will discuss all of my options at my next neuro appointment next week.  I'm thinking I'll most likely start with Azilect and go from there.

Thanks again.  :-)

Posted 5/2/2007 6:37 PM (GMT 0)
Hi all,

Ed's last post should be standard reading for all of us who get PD.  It's because we are all so different that the neuro's have no standard way of treating us; therefore, they can only be guided by what we, the patients, tell them. If we are regularly going to them saying we are unwell they can only respond with even more, or different meds. We are, in fact, guinea pigs. Their alternative is to tell us to go away untreated and they are obviously unhappy to take this attitude.

Today I felt very tired due to having a poor night and my legs feel sluggish and unresponsive.  I can get no enthusiasm for anything at all and my speech to my wife is in monotone and difficult for her to understand.  In fact, I feel thoroughly miserable with life. But tomorrow I might feel better.  If I am, even slightly, I will feel that I have beaten the ruddy disease for yet another day. If I still feel bad then I will say a little prayer that I will feel better tommorow. What I wont do is to go to the doc and ask for more meds.  I will save that for when I am certain that I need them.

Its a hard old life, especially for people like Anne who has multiple problems.  I have had two lots of cancer, thyroid problems, oesophagus troubles, arthritis and have chronic renal failure that will soon lead to dialysis 4 times a week, so I expect to feel ill.  Thats the cards I have been dealt and I don't like them very much.  But there people worse off than me and I feel lucky to be alive. My way is to look forward to the good days...and they do come...and if my little 5 year old grandson is over at my house with me and I am having a good day then my prayers have been answered without taking even more meds.

As Ed and the Bear, Stella Marie and lizzy says, listen to your neuro and find out as much as you can from other people, but remember that medications like the ones we take, have their own consequences so be aware, but not frightened.

Hope this doesn't come across as a lecture...all I am trying to say is try to look at the bright side...and have hope.

God Bless

BILLY

✚ New Topic ✚ Reply