Parkinson's Disease Tulip


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Old 04-10-2012, 02:07 PM #1
kathymills40 kathymills40 is offline
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Default Husband with PD, has burning skin sensation

HELP!
My husband was diagnosed with PD in 2001. Was started on Mirapex, and did well with that then Amantadine was added and our world fell apart quickly due to side effects.
He is now taking Stalevo 150 mg 4 x a day, Sinemet 25/100 4 x a day, Seroquel 100 mg @ bedtime, Zoloft 50mg @ bedtime, Klonopin 1 mg @ bedtime for PD. He is also taking Prilosec 20 mg 2 x a day, Vytorin 40mg 1 x a day, Cardura 4 mg 1 x a day.
He has been experiencing a burning prickly sensation in his skin for a couple of years now. It is progressively getting worse to the point it is almost incapacitating him. His Neuro Dr here has dx'd him with hallucinations due to PD & Med's as well as his Neuro Dr @ Mayo Clinic in Jacksonville, Fl. The only thing we are doing is adjusting his Seroquel & Zoloft, but it has not had any effect on him at all. He is at the end of his rope, his skin feels like it is on fire at times, and that things are contaminating him.
My question is has anyone in the forum heard of or dealt with this kind of issue, and do you have any help or suggestions?
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Old 04-11-2012, 09:46 PM #2
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Exclamation neuropathic pain

Kathy,

I have neuropathic pain from parkinson's -- it feels like burning at the nerve endings. Maybe this is what your husband is experiencing? It is uncommon, but certainly one of the many symptoms you can have. When I start having it again, I know it's time to adjust my PD meds.

"It is a burning pain, with spontaneous onset, and periods of exacerbation, poorly localized and usually more intense in the more affected side. Its pathophysiology in patients with PD is not clearly defined." ...and " neuropathic pain consisting of burning pain, tingling or numbness"

Jean
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Old 04-13-2012, 02:56 AM #3
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Hi,

Does your husband have this sensation nearly all the time? Or is is just if he is feeling it just at certain times? I now have that sensation in my feet upon waking up or just when reading a book. For me, It seems to be yet another, always pleasant, symptom of wearing off or having withdrawal signs (I see them as one in the same).

It could be...peripheral neuropathy. This is recognized now as more common than once thought in PD. OMG! I just read that drug list...no wonder your poor hub feels contaminated. When you have that many different chemical reactions going on who wouldn't feel filled with toxins? He is taking nine different meds! I would like his doctors to look over all he is taking and then ask each one if that is how they would like to see their wives or mothers treated.

For starters, how do they know it is not a side effect of one drug or the cocktail. I would look question the Vytorin first. Both it and the Cardura have peripheral neuropathy in their side effect profiles. Don't suddenly stop the PD drugs it can be life threatening. I would first try to find a doctor willing to see the craziness in all those drugs. There have been studies that questions Vytorin even works and it can cause severe liver damage.

Don't mean to alarm you, but all those drugs must have an impact. I would see into safely reducing down to just PD drugs to narrow down. It is unconscionable that the Mayo Clinic just agreed without any question? Did he start the PD drugs first? Can you tie the burning to a time close to adding in one of the drugs?

Anyway, if I were in your shoes I would start there. The psychosis bit could reflect that he has too much levodopa going in at once. I am no doctor, but common sense dictates that when a patient is already taking 8 different drugs you don't just give him a 9th to counter. The Stalevo has Sinemet in it, so taking that along with straight levodopa may be a problem. They could just give him the Entacapone minus the extra l-dopa? The Seroquel he is on blocks dopamine, so they cancel out at some level. What is the point? Well, on the bright side I bet that your husband may feel better with tweaking and eliminating some meds. I hope you both find relief soon.

Laura
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Old 04-14-2012, 08:06 PM #4
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Quote:
Originally Posted by Conductor71 View Post
Hi,

Does your husband have this sensation nearly all the time? Or is is just if he is feeling it just at certain times? I now have that sensation in my feet upon waking up or just when reading a book. For me, It seems to be yet another, always pleasant, symptom of wearing off or having withdrawal signs (I see them as one in the same).

It could be...peripheral neuropathy. This is recognized now as more common than once thought in PD. OMG! I just read that drug list...no wonder your poor hub feels contaminated. When you have that many different chemical reactions going on who wouldn't feel filled with toxins? He is taking nine different meds! I would like his doctors to look over all he is taking and then ask each one if that is how they would like to see their wives or mothers treated.

For starters, how do they know it is not a side effect of one drug or the cocktail. I would look question the Vytorin first. Both it and the Cardura have peripheral neuropathy in their side effect profiles. Don't suddenly stop the PD drugs it can be life threatening. I would first try to find a doctor willing to see the craziness in all those drugs. There have been studies that questions Vytorin even works and it can cause severe liver damage.

Don't mean to alarm you, but all those drugs must have an impact. I would see into safely reducing down to just PD drugs to narrow down. It is unconscionable that the Mayo Clinic just agreed without any question? Did he start the PD drugs first? Can you tie the burning to a time close to adding in one of the drugs?

Anyway, if I were in your shoes I would start there. The psychosis bit could reflect that he has too much levodopa going in at once. I am no doctor, but common sense dictates that when a patient is already taking 8 different drugs you don't just give him a 9th to counter. The Stalevo has Sinemet in it, so taking that along with straight levodopa may be a problem. They could just give him the Entacapone minus the extra l-dopa? The Seroquel he is on blocks dopamine, so they cancel out at some level. What is the point? Well, on the bright side I bet that your husband may feel better with tweaking and eliminating some meds. I hope you both find relief soon.

Laura
Laura,
Thank you for the reply. I have questioned & questioned his Dr's about his meds to no avail. I have taken him off of the Vytorin in shear desperation in hopes that it may help in some small way. He is truly at the end of his rope. His burning is all day long. He lives for the time to go to bed and sleep since that is the only time he is comfortable.
Kathy
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