Happy belated Easter

[Guest guest]

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]

Bozena, that is a very interesting concept. Yet, many people do it! The laughter has been proven to help chronically ill people to respond better to treatment. Perhaps, if we had less doctors who were so morose and more who were jovial, then our care would be much better! Just a thought.

Debby

happy belated easter>> Hi and happy belated easter,> I have been out of network circulation for a while and just tried to> read through tons of posts... Hopeless, but so good to read about all> of you.> Thanks for sharing beautiful photographs of trees, sunsets and> mothers & daughters. So nice!> Sorry to hear about your dog, Ruth. It is so hard to comfort our> animal companions and they can comfort us so easily! But in my> experience, we lost several dogs and cats over the years, they know> when their time comes and they go with grace, not fighting.> Bozena: about the night sweats. I have them regularly and I am not an> prednisone or immuran. I am also not yet menopausal and my hormones> are stable. But I do get them regularly. I have to get up and change> half asleep and find a soaked T shirt on the floor the next morning.> For me, there is a definite connection between food and these sweats.> If I eat something my bile ducts/liver find tough going, I get the> sweats. It just happened a few nights ago when I ate easter chocs and> I should not> have... Choc frogs are gorgeous, by the way, I know what you are> talking about. A couple of years ago, we had an exchange student with> us from Melbourne for six months and she received regular supplies> from home.> Jan: when is your hubby going for the disc job?> Early April I had another biopsy. The good news was that the liver> damage detected in 2001 had not progressed, in fact it "appeared> healthier" , maybe thanks to the silymarin. The bad news was that the> bile duct damage is "grave" and "unusual in appearance". I was tested> twice for AMA with negative results but have to go back for another> test next week. For the time being it looks like a weird version of> autoimmune cholangitis/AMA negative PBC, but the verdict is still> out, another set of tests is expecting me between now and the middle> of May. I was quite rattled at first. Thankfully, my husband's timing> was perfect and so we set out on our holiday within 24 hours of this> news. We cycled for seven days along the Danube river from Bavaria> into gorgeous Vienna, covering 240 miles. Beautiful country, lovely> people, wonderful weather. Fatigue and nausea kept their distance -> and on the one day when they joined me, we hitched a ride on a boat.> In Vienna, we got talking to a Canadian couple staying at the same> hotel. Turned out he had lymphatic cancer some years ago and the> doctors told him that he had no hope. He decided otherwise and talked> to his cancer cells: If you keep on growing, I will die and so will> you! He recovered and has been healthy ever since. He told me that I> have to accept my antibodies and whatever illness is going on in my> body, and that, as long as I approach it as a battle, my enemy will> try to outwit me.> Plenty food for thought. I am chewing on this one now.> Hope you can all enjoy spring/autumn depending on location.> Take care,> Sophie