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Old 12-17-2011, 06:00 PM #1
Hermes Hermes is offline
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Hermes Hermes is offline
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Confused Cidp

Hi everyone,

My Dx has changed from idiopathic polyneuropathy to CIDP based on a lumbar puncture and how I reacted to oral corticosteroids. My neuro put me on 60mg for 4 days and then 40mg for 4 days and then 20mg for 4 days and finally 10mg for 4 days. It worked great at the high dose. We are trying 1000mg of SOLUMEDROL IV once a month for a 6 month trail. Side effects are high blood pressure (my cardio started me on BP meds a couple weeks ago) and a high pulse. I also find that my heart seems to race and I get out of breath easily.

Pain doesn't seem to be a whole lot less but I'm not sure how long before I should show improvement. I had the treatment 11 Nov and 9 Dec. Next one will be mid Jan.

Has anyone here been through this or know about the side effects and how long this should take?

Thanks,
Hermes
"I've always lived with the philosophy that pain hurts!"
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Old 12-17-2011, 07:08 PM #2
better12 better12 is offline
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Hello Hermes:

Encouraging that your enjoyed some relief, despite the side effects mentioned.

For how long have you been dx'd with idiopathic polyneuropathy? Where and what are you symptoms like?

Take Care,

JB

Quote:
Originally Posted by Hermes View Post
Hi everyone,

My Dx has changed from idiopathic polyneuropathy to CIDP based on a lumbar puncture and how I reacted to oral corticosteroids. My neuro put me on 60mg for 4 days and then 40mg for 4 days and then 20mg for 4 days and finally 10mg for 4 days. It worked great at the high dose. We are trying 1000mg of SOLUMEDROL IV once a month for a 6 month trail. Side effects are high blood pressure (my cardio started me on BP meds a couple weeks ago) and a high pulse. I also find that my heart seems to race and I get out of breath easily.

Pain doesn't seem to be a whole lot less but I'm not sure how long before I should show improvement. I had the treatment 11 Nov and 9 Dec. Next one will be mid Jan.

Has anyone here been through this or know about the side effects and how long this should take?

Thanks,
Hermes
"I've always lived with the philosophy that pain hurts!"
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Old 12-18-2011, 08:33 AM #3
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Lightbulb

The steroids possibly will raise blood sugar...so you should monitor that.

Over time they tend to create "weakness" as well. This is because they deplete potassium. So that should be monitored.

Calcium and Vit D are also impaired (and this may affect bone density).

I found this article on the net written by a doctor for his patients, and I posted it on MG forum here. It is really the BEST information written well for patients:

http://neurotalk.psychcentral.com/sh...ght=prednisone

So please do read it. It is not long.

And if this is truly an inflammatory problem for you, I'd consider anti-inflammatory--antioxidant support supplements.
Vit C
Grapeseed extract
R-lipoic acid (stablized form).
And eating antioxidant rich foods...blueberries, strawberries etc.
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Old 12-26-2011, 06:25 PM #4
Hermes Hermes is offline
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Mrs. D,

Numbness began in my thighs summer 2008. Official Dx was from Johns Hopkins in May 2010. The Dx changed to CIDP in Oct 2011. Symptoms are mostly in the legs and feet. Numbness, pain (sharp, burning, or aching), tingling, and cramping. Occasionally I get a light burning that will go up my back and head onto my face. That hasn't been happening much lately.

Hermes


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Originally Posted by better12 View Post
Hello Hermes:

Encouraging that your enjoyed some relief, despite the side effects mentioned.

For how long have you been dx'd with idiopathic polyneuropathy? Where and what are you symptoms like?

Take Care,

JB
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