Kennedys Disease Community
Neuropathic Itch

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08-21-2013, 11:06 PM
Mike Murphy
Neuropathic Itch
I have read that Neuropathic Itch is often associated with many neurological diseases and disorders. I found this out by researching why for years I have been experiencing severe itching (mostly on the tops of both forearms near the elbow) for no apparent reason that will persist for a week or so then may go away for a while but always returns. Scratching offers little relief and can sometimes exacerbate the itching. I often break the skin by scratching so much. Antihistamines offer some relief but not much. Could this be KD related, and has anybody else experienced this, or should I look into other causes?
08-22-2013, 10:49 AM
Mike, a good question. I have experienced an itching sensation in the lower arms and the thighs. I especially notice it if the area was covered and it is warm. I never associated this itching with KD. It will be interesting if others have experienced this.

I grabbed the following from Expert Consult:

NEUROPATHIC ITCH Neuropathic itch arises as a consequence of pathology at one or more points along the afferent (sensory) pathway of the peripheral or central nervous system. In brachioradial pruritus (BRP) and notalgia paresthetica (NP), it is believed that dorsal spinal nerve radiculopathy, usually secondary to degenerative disease of cervical and thoracic vertebral bodies, respectively, results in persistent itching, paresthesia, hypesthesia, or pain. There may be hyperpigmentation and/or excoriation of the involved area. These forms of localized pruritus may go undiagnosed for quite some time. By the time patients fail to respond to various treatments and obtain a dermatology referral, the itch has often been going on for months and may in fact have become generalized, with secondary changes that may be mistaken for a primary dermatosis. Repeated application of capsiacin cream, which depletes axonal stores of substance P, may be a safe and highly effective approach to treating …
08-22-2013, 05:34 PM
Mike Murphy
I'll have to try the Capsaicin cream. I have used several Cortizone creams topically with little affect.
08-24-2013, 04:12 PM
Bob Heitzman
I haven't had that particular problem - but I find if I keep my nails well trimmed I'm better off.

email:rheitzman at gmail
08-29-2013, 09:47 AM
Hi to you all.
I dont know if my itch is Neuropathic or not but I take 1 x 180 mg of Fexofenadine a day to prevent itching. The itch itself is very intense and feels like my skin is burning. It appears anywhere on my body, but my back, legs, and elbows seem to get it worse. Also my skin turns bright red wherever the itch is. There is no rash and if I miss the tablet just once I am in trouble. Scratching makes it worse. My wife gently soothes the area with her fingertips and that does help. It seems to overload the area with sensation and confuses the itch signal. My GP wont associate it with KD, but also says he has never seen it before. At the moment the tablets seem to have calmed it down somewhat, however if it does flare up again I shall seek a second opinion.
09-03-2013, 05:51 PM
Dan B
The medication gabapentin can be used to relieve itching or tingling associated with neuropathy. If the fexofenadine and other antihistamines aren't helping you, and the itching is bad enough to keep you awake when you want to sleep, it's worthwhile to ask your doctor about gabapentin.

The following article has some background. (The word "pruritis" is just the medical term for "itch.")
09-09-2013, 08:41 AM
Hi Dan. Many thanks for that information. I will have a talk with my GP about it. Im prepared to try anything. It's very distressing wherever it appears but always seems to be worse on the tops of my feet somehow. It's definiteley not a known Allergy as far as I am concerned.I have done the documenting it, trying to work out some form of pattern or reason, but no clues as to why it happens. Best wishes to you Dan.
09-09-2013, 04:27 PM
Dan B
Hi Eric,

Concerning the reason why it happens: It is caused by KD. We spend so much time talking about motor neurons, it's easy to forget that KD affects the sensory neurons too.

On the KDA website in the page, one of the symptoms listed is "Primary Sensory Neuropathy: Numbness over certain areas. Loss of sensation."

On the Wikipedia page for KD, under Signs and Symptoms, it says: "Primary sensory neuropathy: Loss of sensation and numbness, usually not noticeable."

You may notice the neurologist lightly taps the point of a straight pin on your feet and ankles to see if you still have sensation there.

There are a few points that need to be added. First, the statement "usually not noticeable" is baloney. I have talked to several KD people who have noticed it. Second, the symptom is not only loss of sensation, but also a tingling sensation (as in pins and needles, my foot's asleep) and an itching sensation. It's often bad enough to keep people awake at night.
09-11-2013, 07:56 AM
Thanks again Dan.
Something for me to go on. I would go to the moon if the answer was there. That's a big Lol.

Best wishes.

10-29-2014, 07:34 PM
John B
A slightly(!) late contribution to this thread:

Over the last few weeks, I have developed chronic itching which bothers me most at night. It affects the whole of my body, but is generally most intense on my lower legs and feet, forearms and hands. It has progressed from nuisance to major irritant, and I'm off to see my GP tomorrow. Having already consulted 'Dr Google' it seems that it could be indicative of some systemic problem and as thyroid dysfunction affects two close family members, I need to get checked out. As KD is a systemic condition, I thought I'd visit here, too, and found this thread........

Will post any relevant updates later
12-10-2014, 07:12 AM
Pocatello Jim
For what it's worth, I will add my recent experiences with neuropathy and neuropathic itch.

On November 15, I went to the ER,thinking that I had a blood clot in my baby toe, because the base was black and the toe was purple and swollen. After several hours and tests it was determined that I did not have a blood clot. My heart is healthy. I have good blood flow in my arteries. And my lungs are strong and healthy. They checked all this because in addition to the toe, I also have no hair on my hands or feet and they were thinking Peripheral Arterial Disease. In all the testing they never did an xray because I couldn't remember injuring my toe.

I went to my neurologist the following Tuesday and my toe was much improved. She had me close my eyes and then proceeded to check my feet for feeling. I was very surprised to learn that I had no feeling on the bottom of my feet at all, except for the arch and big toe. This surprised me, because as I told my wife, I can still feel my feet. I can still wiggle my toes, etc. But I now have to do a foot check daily to check for injuries.

I am also loosing sensation in my fingers, the pinky and ring fingers are the most compromised, but all my fingers are affected. One benefit is that I can handle my daughter's hedgehog easier than anyone else.

My neurologist said that this loss of hair and loss of sensation is part of peripheral neuropathy.

Then this past Monday, December 8, my fingers started tingling, then my hands and wrists itching, then the pins and needles sensations. It also spread to my feet and ankles.

I called the nurse at my neurologist, but haven't heard back. I was going to ask about Lyrica, the medication for diabetic neuropathy.

One other note, the tingling, itching, pins and needles seem worse when I drive or do other things with my hands.

Pocatello Jim
12-15-2014, 12:26 AM
Dan B
Just one point about Lyrica.

There is a older drug that has the generic name gabapentin and the trade name Neurontin. Since it's older, it's off-patent in the U.S. and is available as a low-cost generic drug.

The newer, but similar, drug has the generic name pregabalin and the trade name Lyrica. It's not available as a generic in the U.S. and therefore costs more. I've seen it advertised on TV recently (which may be part of the reason it costs more!)

My doctor prescribed gabapentin for sensory neuropathy and it works for me. It relieves the itching and tingling, and allows me to sleep. I asked the doctor about pregabalin/Lyrica and he said it works no better than gabapentin/Neurontin and is not worth the extra cost.

So, be aware that you may be prescribed either one. In my experience the gabapentin is fine, but of course you should consider your doctor's recommendation on which one is better for your situation.
12-18-2014, 09:18 AM
Pocatello Jim
Thank you for the information Dan. Thankfully I did not need it.

I went to my primary care doctor and told him what was going on and that I thought it was progression of peripheral neuropathy. He smiled, said it might be, but that it could also be a vitamin B12 deficiency and he preferred to try conservative treatments first.

He gave me an injection at the office and a RX. He also did blood tests and xrays on my cervical spine.

There is still numbness and loss of sensation in my hands/fingers and feet/toes, but the pins and needles feeling and itching is all but gone. I still get tingling and itching if I do a lot with my hands.

My xrays showed only mild degenerative damage. Doctor is not concerned.

Doctor reminded me that many symptoms may mirror KD symptoms, but not to think everything is related to caused by KD.

Merry Christmas to you all.

Pocatello Jim
12-18-2014, 10:49 AM
Merry Christmas, Jim

I take B12 supplements every day after one of our chat rooms where an NIH doctor mentioned that B6 is not good for us, but B12 is.

You doctor's comment about 'not everything being related to KD' is right on.