neuropathy ( Hobbs)

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: Hob@...

Date: Tue Mar 7, 2000 8:49 pm

Subject: Neuropathy

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From: RCColloran@...

Subject: Re: Neuropathy

, I also have neuropathy in hands and feet. Does this go with RP?

Yes, it does. It goes with other forms of vasculiltis, with auto-immune MS

and with RA (rheumatoid arthritis). I have wondered if the neuropathy that

appears with RA is not actually undiagnosed RP or other vasculitis.

>> I was tested for B-6 and found I had none in my system. Am now taking B

vitamins and still there are days that the numbness continues.

I was taking B-complex when the neuropathy in my feet developed so there is a

possibility I am not absorbing what I am taking. The doc tested me for Folic

Acid specifically, explaining that I simply may not be absorbing the B

vitamin taken orally, but thought we should try oral Folic Acid while waiting

for another blood test (10 days) result.

There has been some improvement in the neuropathy since I started the Folic

Acid. The tingling is always there when I am in a chair or in bed, don't

really notice it that much when walking around but sometimes notice tender

spots on the bottom of my toes. If I point my toes like a ballerina and turn

them inward towards each other I can feel just what part of my feet are

involved because that causes the burning pain. There is also occasional pain

in the metatarsol (instep and back) part of the bottom of the foot.

Yesterday I had a short episode of pain that was spreading back towards the

heel and was more severe than previously (while taking the folic acid).

After I rode my stationary bike for a while (!!!) the feet seemed better but

today they are tingly again and burn when I point toes.

If the folic acid is helping it is minimal. Doc said that if it doesn't help

we would try shots of B vitamins if the blood test comes back showing the

enlarged red cells or whatever it is that indicates lack of B vitamin.

I have no idea why RP patients lack B vitamin in spite of taking supplements.

P. said Dr. Trentham is oppposed to B vitamin shots because they boost

the immune system and his method is to avoid anything that would do that.

However, if neuropathy from lack of vitamin B (IF that is what is causing it)

gets bad enough there can be demylenization of nerves (like MS) and permanent

damage.

So taking folic acid or getting B shots may have a risk that you will get a

flare of some kind if Dr. Trentham is right. But not taking it can mean you

risk loss of the use of limbs. I think I will take my chances on a flare

and hope it is one that will respond to increase in prednisone.

If my blood test shows I am not absorbing oral B vitamin my doc said we will

try the B shots once a month for 90 days to see if the neuropathy improves.

We have not discussed the next alternative if it does not.

When severe neuropathy does not respond to antinflammatory meds and immuno

suppressants some docs will try plasmapheresis (exchange of plasma to

detoxify -- get rid of the antibodies -- in the blood). Severe is like

total numbness of the lower legs making it very difficult or impossible to

walk.

A friend with RA developed severe neruopathy in lower legs. Her doc gave her

prednisone and cytoxan for a while (has to be over 90 days before cytoxan

" kicks in " ) and it did not respond. They then gave her plasmapheresis in

hospital and intravenous cytoxan (one session). I don't know if they tried

any B vitamin treatment prior to the other meds. Since the plasmapheresis --

she has been home for about ten days -- she says she is feeling much better

but I don't know the details -- if sensation is returning to her lower legs.

She still uses a walker but the doc has said it may be 2-3 months before they

know just how much she will benefit overall -- if she will ever walk

unassisted again.

>>Increased my Ambien last night to 10mg and only slept 2 hours. My Rheummy

tells me until

I can get a full 8 hours sleep my body won't start to repair itself. Guess

I need to try something else.

>>

I was taking 2 x 10 mg Ambien at bedtime when on 60-40 mg prednisone and

still only slept for 2-3 hours. Ask your doc if it is OK to take another

dose when you wake up at night or to take 5 or 10 mg at bedtime and another

5mg when you wake up. Also ask him if other patients on Ambien and

prednisone, etc., can sleep with the Ambien -- why he thinks it will work for

you. It may be one of the meds that works for patients like us only some of

the time.

Ask if there is another med you might try. I changed to Restoril after a

cardiologist recommended it and the Ambien wasn't working and found that put

me to sleep quickly but didn't always make me fall back asleep when I woke up

after a few hours. However my doc lets me take a second dose or Restoril or

an Ambien when I wake up (automatically!! Don't wait to see if you can fall

asleep without it) and that seems to work just fine -- I can sleep until

after 7:00 a.m. that way.

I noticed that some list members use XANAX for sleep but have not seen anyone

say how well it works for them. You might ask your doc about that, too.

I am now on PAMELOR -- for B vitamin factor of some kind -- it also helps

depression altho doc assured me I didn't need it for that (:-))). I find I

sleep deeper with it but still wake up and cannot always get back to sleep

unless I take a Restoril or something else (one of my dizzy pills makes me

sleepy and I will sometimes take that when I wake up and can sleep some more

after about 30 minutes -- that is Alpralozene or something like

that...probably misspelled). Whatever you do, discuss it with your doc.

Ask about the addictiveness of Ambien and other sleep medicines when they are

prescribed. As what the addiction involves in terms of symptoms.

H.

Colorado Springs