My Neurologist has prescribed a relatively new medication to help control the neuromusclar pain associated with Kennedy's Disease. Information on Lyrica can be found at WWW.LYRICA.COM. This medication is not a narcotic, and is not addictive. Anyone with Kennedy's disease may benefit from this medication, and should discuss this drug with their Neurologist.

Strange to hear about pain problems, Both my brother 81, and I 79, have verified KD (late onset?) and have had very little pain. Sometimes I get a "sore muscle" type pain but it usually is very mild and intermittent. Both of us in our later years are experiencing advanced weakening in extremeities, particularly in the legs.He uses a walker and I use a cane. He has exercised very little while I have tried to excersise regularly. Go figure.

The only pain I have is lower back pain. I take Neurontin, 3000mg a day divided by 3 time a day. I have been taking this dose for the last 7 years, and I really thing it has been helping me.

quote:

Originally posted by Michael Gill:
The only pain I have is lower back pain. I take Neurontin, 3000mg a day divided by 3 time a day. I have been taking this dose for the last 7 years, and I really thing it has been helping me.

Michael, Is the pain muscle related like tightness? or Spine/Disc related? If it's muscle related I may ask my Doctor about trying that. Thanks

quote:

Originally posted by KDA Adminstrator:

quote:

Originally posted by Michael Gill:
The only pain I have is lower back pain. I take Neurontin, 3000mg a day divided by 3 time a day. I have been taking this dose for the last 7 years, and I really thing it has been helping me.

Michael, Is the pain muscle related like tightness? or Spine/Disc related? If it's muscle related I may ask my Doctor about trying that. Thanks

Hi Terry, Sorry I have taken so long to get back to you. We just got back from vacation. I really think that my pain is muscle related, the reason I say that is I get my hip put back in place every month, which makes me think it puts a strain on my lower muscles around the spine. I hope this helps you out. Michael

What are the side effects of Neurontin?
Is weight gain one of them? My husband take the generic form Gabapentin.He takes 300 mg daily.

i take 2400mgs of gabapentin everyday i eat like a horse and i'm losing weight

I have taken Lyrica for 3 years for neuropathic pain in feet and ankles. Although it helps some, I have noticed that it is less effective now than when I started(150mg X 2 daily). The best thing for my ankle pain have been Lydocane patchs (Lydoderm).

Information is so good. For this disease treatment should be goal-oriented, with clear input regarding the patient’s expectations and personal goals.

This message has been edited. Last edited by: Bruce,

I have added 5 mg oxycodone at night before bed for severe pain days. It helps me get to sleep more often than not.
Does anyone else have neuropathy with this disease?

Randy, neuropathy is quite common especially as the disease progresses.

For pain management, ibuprofen seems to remove the edge from the pain when I cannot get to sleep. I don't need the tablet very often, but it does help with deep aching in the muscles.

When you experience neuropathic pain, try massaging the area. It seems to help for me.

I think that there are now more approaches available than ever before to help manage to pain.

__________________________________________

This message has been edited. Last edited by: Bruce,