Re: Happy belated Easter- Anne and B-12 deficiencies

[Guest guest]

Hi Anne. Sorry it's been so difficult for you. I hope you get the Vitaxin soon

and it helps you. Driving to UCLA every day for a blood test sounds like a

really difficult task, but well worth it if it works. I hope it wasn't a far

drive.

Then to not even be able to get Enbrel was a double whammy. Thanks for the

info on B-12. Stomach inflammation can cause a B-12 deficiency, and a lot of

us here have stomach inflammation from the meds we take. B-12 deficiency causes

anemia, which is very common in RA. An interesting fact- the liver can store a

6 year supply of B-12!!! It is rare to be B-12 deficient. The problems is that

it is not absorbed for various reasons, stomach inflammation being one.

B-12 deficiency causes neurological problems, a progressive demyelination of

the nerve cells. The results of folic acid deficiency is almost identical to

B-12

deficiency. B-12 deficiency can cause abnormal gait, chronic fatigue,

constipation,

depression, digestive disorders, dizziness, drowsiness, enlargement of the

liver,

eye disorders, hallucinations, headaches, inflammation of the tongue,

irritability,

labored breathing, memory loss, moodiness, nervousness, neurological damage,

palpitations, pernicious anemia, ringing in the ears, and spinal cord

degeneration.

Strict vegetarians must remember that they require vitamin B12 supplementation,

as this vitamin is found almost exclusively in animal tissues.

Everyone should ask their doctor to include a B-12 test when they get their

routine blood

tests done.

a

[ ] Happy belated Easter

Hello all,

I am sorry not to have written sooner: it has been a difficult time!

Please know of my best wishes for everyone and special greetings to

all of the new people. Welcome!

I believe the last time I wrote I mentioned I was on a new phase 1

trial for a new RA drug called Vitaxin. Vitaxin is actually a cancer

drug that works by cutting off the blood supply to tumors, thus

causing them to shrink and die. The drug has been changed for RA

patients, in our case the drug cuts off the blood supply to areas of

inflammation and goes after cells that cause joint destruction. I

went through Part A of the study last fall which was very difficult

as I had to drive to UCLA every day to have blood taken for a month

after the first infusion to see how long it left my body. With my bad

veins this meant being stuck several times for each blood letting.

They finally had to draw blood between my swollen knuckles. I felt

like one huge hematoma. My doctor had to come out on the weekends to

draw my blood -- how long has it been since doctors made house calls!

Right when I was ready to begin Part B, where I would receive an

infusion of the drug or placebo once a week, someone else had a near

fatal reaction and the study was stopped until the FDA could review

the findings. Since this is a Phase 1 study, meaning no previous

human trials, the FDA is very careful and moniters the study quite

carefully. This was a disappointment to me as I was ready to get on

with it since, if the drug works as projected, it could be very

effective without the side effects of increased risk of injection.

This drug will open up a whole new way of treating both cancer and RA

so I am really interested in continuing the study.

The FDA finally came back and allowed the study to continue but the

drug company decided to change the mode of tranmission: i.e., instead

of giving an infusion into the veins, the drug will be given under

the skin, sub-cu, like Enbrel instead. Of course, to give that much

medication once a week means giving myself between 8-12 shots on one

day, but that is OK with me. If this works I would stuff it all up

my nose to be free of some of the pain! So right now I am waiting

for approval from the drug company to begin Part B; please God I

won't have to wait too much longer as my condition has gotten much

worse while waiting for the study to continue.

On top of this, I called UCLA pharmacy this week to pick up my Enbrel

as I had run out and was told there would be a one month delay!

Evidently Immunex really messed up on production of Enbrel and now

faces a severe shortage. The problem with anti-TNF drugs like Enbrel

is they are comprised of live proteins that must be grown in

cultures: they can't be mixed together like chemicals used in other

drugs. I spoke with Immunex and was told they were sending out the

drug; they claim there are no stoppages, but I can tell you a lot of

people are doing without it and getting much worse as a result. In

about a year Abbot is coming out with an anti-TNF which is better

than Enbrel and is taken less frequently. I hope this new drug gives

Enbrel a run for its money. There is no way I can wait a month so I

am getting one month free supply of Anakinra (Kineret) from Amgen to

hold me over until the shortage ends, sometime in mid-May, they hope.

(Please check with your doctors, some were given free samples of

Anakinra so they might have some for you.) I know I will flare but I

hope the combination gives me a bridge to last until I can receive

Enbrel on a regular basis again.

How many other people in this group have had problems getting their

supply of Enbrel? Not trying to begin the drug since I know there

will not be anyone else able to begin until late summer. I mean

people who have been on the drug and can't get it, please send a

message to this group as I am curious how wide spread it is.

Incidently, I read recently that people who take drugs like Prilosec,

Prevacid, or other related stomach drugs, can end up with a shortage

of vitamin B-12. The signs of not enough B-12 are depression and

insomnia, two things I have on a regular basis. I have been taking

some extra B-12 and it seems to help although I have to be careful

since the high doses bother my stomach. I thought I would pass that

along since most of us probably suffer from depression and insomnia

so perhaps this might help.

I will try to write more often, God willing, but please know of my

prayers and thoughts for all of you. May you have a blessed Easter

and happy spring.

Anne

[Guest guest]

wow!!! i didn't know