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Sinemet does not work


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#1 jolo53071

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Posted 28 April 2010 - 11:04 PM

I live alone on an acreage about 20 M from the city. 71 yo, 5’10”, 190 lbs. Have had ET since late teens, progressed slowly, affected mainly handwriting. I was diagnosed with PD almost seven years ago. So far it has affected the right side only, luckily I am left handed. Started with a bang in right foot and leg, then six months later in hand and arm, both quite severe. The first neurologist started me on Sinemet and Nortryptiline and later added Trihex. After four months I was in a worse state and asked my physician for a referral. To make a long story short I ended up on Clonazepam four years, 1mgx3/day plus Gabapentin three years 300mgx6/day this one for neuropathy in my feet and they both help the tremors slightly. Over the past year I am having difficulty moving in bed and chronic lower back and top of hips pain which is worse if I sleep on my back. I also have difficulty getting in and out of the tub. My right hip is now about 1" lower than other and seems to be pushing inwards. I had bars installed on both bed and tub. I now need to take a break even when washing dishes. I have slowed down on the right side but am still able to fasten buttons, tie laces, etc. I have tried Sinemet many times over the years in different doses, the longest being three months up to 1100mg/day without any effect that was around four years ago.
Because Sinemet has no effect and there is not much rigidity my neuro in Edmonton Alberta needed a second opinion about the diagnosis so he sent me to a top movement disorders specialist in Vancouver, a nine month wait and 700 miles away in May of this year. First his assistant examined me then he came in and attentively listened to what his assistant had to say while making notes. He then carried out a short exam himself, used his computer and then summarized his findings. I was pleased with the examination as it was the most thorough yet, in all it took roughly one and a half hours, but as we were running out of time there were question that remain unanswered. He proclaimed that I do have PD but that it is tremor intensive and progresses slower than other forms, and that I will need to start Sinemet somewhere along the line. He did rule out alI the Parkinsonisms. I did briefly mention the stiffness in my back and he said it was likely due to the PD. I do have some arthritis in my lower back from wear and tear but the pain was not chronic and I would over the years pop a Arthrotec to help when inflamed but that no longer works.
I assume that Sinemet is supposed to help stiffness (rigidity if that is what this is?) so two weeks ago I tried the Sinemet again 100mgx4/day for one week but it actually aggravated the back pain and never seemed to help any other symptoms, I stopped as I was worried it would do more harm. What worries me now is that I am no longer able to walk any distance although my stride and balance are good or do most other exercise without paying for it with hip and lower back pain. He started me on Mirtazipine 15mgx1/day at bedtime, said it would likely help with both tremors, I have noticed a slight improvement in the morning but am more tired during the day now and wonder if it is worth the trouble.
I know you have many questions on your hard drive but I have tried to be as brief as possible. My questions to you are: How long on average does it take Sinemet to start doing its job? Is there any reason why the Sinemet is not working? Do you have any suggestions that I might try? Incidentally there are no PET scans available in Canada for diagnostic purposes.

#2 Dr. Fernandez

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Posted 01 May 2010 - 07:22 AM

Thanks for your message.

The response to sinemet in PD is very good but it is not perfect. One study showed that 85% of PD patients experience a dramatic/significant response to sinemet. That means, 15% (and you might be included in this) do not perceive a meaningful benefit.

The other thing to consider is that sinemet does not uniformly work for all types of motor problems. It is generally very good for stifness and slowness but it is a hit or miss when it comes to tremor. So I always tell my patients, before you dismiss sinemet, make sure it is working for the other motor problems and not just tremor.

The other factor is the dose...perhaps you just have not reached the right dose?

Another factor is side effects....perhaps you are experiencing more side effects that are negating the benefits? Maybe you should go up the dose a little slower?

Then the other possibility is that you really don't have PD and therefore sinemet will not work.

But the bottomline is that if you reached the right dose of sinemet, it should work...almost immediately.

Yours,
Hubert H. Fernandez

#3 jolo53071

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Posted 01 May 2010 - 11:47 AM

Dr Fernandez:
Thank you for your reply it is very helpful.
I am aware that there is not much can be done for tremor short of surgery and I am not into that.
My concern is the stiffness in my back which is preventing me from doing chores and exercising and since I will not see a specialist for nine months I must once again impose on you.
During this last short trial on the Sinemet I started on 100mg and increased it by 100mg daily to 400mg four hours apart and continued on this for three days. When I noticed that the pain was worsening I stopped cold turkey.
Assuming that I am not among the 15%, possibly you are able to provide me with some tips on starting off and the level that may be appropriate for my situation. What is the maximum safe level that I can try without inducing intolerable side effects?
The other point is that the major parkinsonism's have been ruled out on the basis of time elapsed and my current symptoms. Is there any other condition that may present the symptoms described, ie. some type of anxiety disorder as I went through five highly stressful years prior to the onset.
Much appreciated.

#4 netgypsy

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Posted 02 May 2010 - 01:41 PM

IF you haven't eaten anything that will fight with sinemet like protein or IF your stomach isn't emptying or If you took it on a full stomach, it kicks in as quickly as 20 minutes. It's immediate. there's no day by day build up necessary.

I just had to increase the dosage little by little with my doctor's knowledge to get the response.

First thing in the morning I'd hydrate - at least half a liter of water - then CHEW a regular sinemet. 25/100 and drink half a glass of water. Now that is NOT enough for me to get a response to I went to 150mg or 1.5 tablets of regular sinemet. I do get a response from that and I'm able to walk, talk clearly, get out of bed and most aches and pains are gone as is the freezing, the stiffness etc. If the 150 hadn't worked I would have gone to 200mg. You will know when you overdose. A mild overdose makes you a bit drunk acting. I was on 2400 mg a day for about six months as I had a medical treatment that required me to be very functional and I asked my neurologist about that high a dosage and he said "there is no upper limit". You take what you need to function properly. but you can overdose so be sure you have someone who knows you well watch you when you experiment because a mild overdose makes you feel very good and act abnormal like slurring words and being argumentative. I was mildly overdosed on a regular basis during that time and I wasn't easy to deal with. The regular sinemet wears off in three hours so you don't have to worry about it staying in your system if you get a bit too much. You won't mind it but your friends and family might. think mildly drunk hyperactive teenage boy on 5 cups of coffee.

Regarding the essential tremor - I understand dbs (deep brain stimulation) is really great for that. You might look into it and it will help the pd also if that's what you have.

#5 Dr. Fernandez

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Posted 25 May 2010 - 04:36 PM

Thanks for your message!
Hubert H. Fernandez




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