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Husband is in the process of being diagnosed.

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Parkinson's Disease
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Posted 5/11/2015 8:21 PM (GMT 0)
Hi there. I just wanted to reach out to those of you who have already been diagnosed with Parkinson's for support and advice. My husband has been having a tremor in his left hand for about a year and he has recently been experiencing stiffness in his arms and legs. He also has pain in his neck and back (that may be unrelated). He went to a neurologist about a month ago and based on his observations and questions, he put him on Azilect and referred him to a Movement Disorder specialist. I went with him to that appointment last week. The doctor was horrible. She rushed him through the appointment and he was out the door before he even knew what hit him. She asked him if he has a history of mood disorder in his family (he doesn't) and if he's been anxious lately (he has a highly stressful job). She had him walk around for 5 seconds (he wasn't exhibiting any symptems that morning). She didn't go over any of the his symptoms other than the tremor. She is putting him on Sinemet (Carbidopa-Levopa 25-100 tab). He hasn't started it yet. Is anyone on Aziliect or Sinemet? The Azilect is very expensive. Until our deductible kicks in it's over $400 a month. Is it worth trying or are there other drugs just as good with low side effects? We briefly thought of trying something else, but the risks of side effects seemed much higher and I had also read that Azilect might help delay the onset of Parkinsons. Anyone know about that. You can't put a price on that, but if we are just throwing money away that is another thing. What have been our experiences with Sinemet? He is going to start it in a couple of days. He was driving out of town and didn't want to risk the possible sleepiness effect. Any advice you can give me would be greatly appreciated. We don't know if my husband has Parkinsons yet, but there is definitely something going on and it's not just stress. Anyone know if spinal cord issues could cause stiffness and tremors? He got an MRI on his neck and spine last week too and he's getting the results Friday.
Posted 5/11/2015 8:33 PM (GMT 0)
Hello paniccu:

I have been on Simenet(25/100) for about 14 months now. Have not experienced any side effects at all. No sleepiness either. But, things can work differently for others.

Posted 5/11/2015 8:55 PM (GMT 0)
Thanks ElTorito!
Posted 5/12/2015 12:43 AM (GMT 0)
Forgot to mention that Simenet only costs me $120 a year. Don't know how much my insurance covers but I only pay $10 a month.

Thanks
Posted 5/12/2015 6:49 AM (GMT 0)
paniccu,
Welcome to healing well. Glad you found us. Sorry your husband is having these symptoms and particularly sorry he had a bad experience with the Movement Disorder Specialist (MDS).

You ask about medications for folks starting on meds. That can be influenced by things like age, severity of symptoms, life expectancy, general health, tolerance of various classes of medications, etc. Something to keep in mind is that no two people have the same symptoms nor do any two people respond the same to medications.

The most commonly prescribed class of medications for newbies is the dopamine agonists - these include Requip AKA Ropineral, Mirapex and Rotigotine patch. (The patch was taken off the market for several months due to an issue with the delivery mechanism - the patch itself - there were no issues with the medication. The medication was crystalizing on the patch and not delivering an even flow. That was resolved and it is back on the market.) Something to be aware of is that the first two can sometimes cause compulsive behavior - sexual compulsiveness and gambling are the most common. I have taken Requip, and only Requip, for 14 years with no significant compulsiveness. I do not have personal experience with any other medications mentioned here.

You mention Azilect AKA Rasagiline. The manufacturer's claim was that it slowed the progression of the disease. However, there are responses from 6 major PD organizations saying this is an inappropriate claim. The Michael J Fox site has some additional information, as do other sites.

The medication that is the most effective for PD is unquestionably Sinemet or Carbidopa/Levadopa. However, one of the concerns is the potential for dyskinesia or involuntary muscle movement see (the 'wiggliness' when sitting or standing). Some people never develop side effects. But on average folks start having dyskinesia approximately 5 years after starting on this medication. When first taking Sinemet, the body processes the medication at a consistent rate. Over time the body starts to have peaks and valleys which become more significant over time - hence, the wiggles when too much medication reaches the brain... or stiffness and slowness when the body receives too little medication. These periods are unpredictable (but are affected by taking in protein). You'll hear people talk about being 'on' when meds are working, and 'off' when not working.

Hope this helps,
lizzy4451
P.S. Spelling may not always be correct ... but it's close. turn
Posted 5/12/2015 10:40 AM (GMT 0)
Thank you. You have given me a lot of useful information! My husband just turned 48. The first neurologist we saw didn't want to put him on the "best" drug, because of his age. The doc had said that it stops working eventually, so he would save it for when symptoms get worse. Is Sinimet considered the "best" drug? I am thinking that the movement disorder doc is just using it to try to diagnosis? I've read about dyskinsia. Is that not as bad as the tremors that come with Parkinson's?
Posted 5/13/2015 5:17 PM (GMT 0)
paniccu,
Yes, I believe most people would say that Sinemet ... levadopa/carbidopa ... is the most effective medication available for PD at this time. You are correct that sometimes Sinemet will be given initially to see how the patient responds. GENERALLY a positive response to Sinemet helps confirm a PD diagnosis. As you undoubtedly know, there is no definitive test for PD - it's a process of elimination (EEG to eliminate stroke, MRI to eliminate brain tumor, blood tests to eliminate misc) and then clinical observation (lack of arm swing, gait issues, etc.).

lizzy4451
Posted 5/13/2015 5:46 PM (GMT 0)
Lizzy:

Paniccu says that "The doc had said that Sinemet stops working eventually, so he would save it for when symptoms get worse." You mentioned also that, you are on something else. I know that medicines can work differently for every person. But, I was wondering then if for 'newbies', meaning no visible symptoms at all, if they should start you on something else and leave the Sinemet when the symptoms start to show up. What do you think?

Posted 5/14/2015 12:21 PM (GMT 0)
ElTorito,
Let me make it clear that I am not a medical professional. I am a person with Parkinson's who was diagnosed in 2001 and has taken an active role in my course of treatment - just as you are.

Yes, I would say that since Sinemet ( AKA carbidopa/levadopa or Stalevo or Sinemet with Comtan) works the best, most people save it for last.

You ask about starting on meds before symptoms appear and whether to start on Sinemet now or later. Again, this is my opinion. The following statements exclude meds that claim to slow the progression - that's an issue in itself. Having said that ... the purpose of PD meds is to address the symptoms. If you don't have visible or functional symptoms (meaning things like tremor or slowness that have advanced to the point where they affect every day living), do you need to take any PD meds now?

When I was first diagnosed I started on a low dose of Requip. In retrospect that dosage was so low that I doubt it was having any effect other than psychological (meaning that I thought I was 'doing something' ... 'fighting back'). Frankly, that is worth something, but if I knew then what I know now, I would have waited to start meds. That is my opinion. You need to make your own educated decision. And ... I commend you for educating yourself!
Posted 5/14/2015 1:48 PM (GMT 0)
Lizzy:

Thanks for your prompt response. Yes, I know you're not a medical prof. Was just asking for your opinion. I will ask my doctor next time that I see him(Aug.) why I was put right away on Sinemet. At the time of my diagnosis he only saw a couple of things that he 'thought' had to do with this condition and prescribed that.

Thanks again.

Posted 5/15/2015 5:22 AM (GMT 0)
ElTorito,
Sinemet has been around a long time. It used to be THE med for PD. Some docs are comfortable with it (and may not be educated on alternatives) and always prescribe it for PD. Others will prescribe it initially to see whether you respond favorably to it (an indication of PD). I'm not sure which reason you are taking it.

This is why it is so important to educate yourself - as you are doing. I'm not sure because I have never taken Sinemet, but would think 4 weeks - or perhaps more - would be adequate to determine whether Sinemet has favorable results. (Hopefully someone else will respond on this issue.) I'm not sure how long you have already been on Sinemet. If you don't want to stay on Sinemet and an adequate amount of time has passed, I would contact my doc and ask what alternatives he/she would recommend (and get a prescription).
lizzy4451
Posted 5/15/2015 2:33 PM (GMT 0)
Lizzy:

Good to be in this forum. Keeps you educated in many ways. I have been on Sinemet for about 14 months. At the time of diagnosis the only 'symptoms' were that I was walking slow and a 'face mask'. Nothing else. Things change after he gave me the medicine. Everything back to normal since then(walking OK & smiling). I believe that is the way it was suppose to work right? Then, I was told that because I responded to the medicine, I had 'something' but, not a 100% sure. I mentioned in previous posts that I have not experienced any side effects. In fact, I don't know what to expect(side effects) since life has been 'business as usual'. So, I am happy the way things have worked out but, the question to ask when I go back in August is, can any other medicine would have helped me in a similar way and kept the 'best one' for a later day if things get worse.

Thanks

Post Edited (ElTorito) : 5/15/2015 2:33:51 PM (GMT-6)

Posted 5/25/2015 9:59 AM (GMT 0)
Eltorito, I will let you know what my husband's doc says about this as well. From what I understand, Sinemet is often the drug of choice for people who get the disease when they are older. My husband is 48 and the doc said that the med might only work well for ten years or so. The doc said that he regularly puts older patients on it. So far my husband hasn't had side effects, other than he's been complaining of additional neck pain. Could this be a side effect of the drug?
Posted 5/25/2015 7:41 PM (GMT 0)
Paniccu:

No idea about the neck pain(side effect). I am 59 and has been taking the drug for over a year. Thanks God I have not experienced anything.

Posted 5/26/2015 7:39 PM (GMT 0)
Thanks.
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