various

October 9, 1998

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November 14, 2001

In a message dated 11/14/01 8:29:02 PM Pacific Standard Time, PWGBreeze@... writes:

Harper, does your daughter also have an autoimmune disorder, or is her illness not related? Peggy/AI??

My gastro guy, who is very highly thought of in the San Francisco medical community, says chronic fatigue syndrome and autoimmune hepatitis are not related. He definitely didn't want to discuss it, says CFIDS isn't a disease he knows anything about. From what I read, I think the two diseases are connected. She is frequently tested for lupus, an autoimmune disease that I'm told several people in my family have had. She has been disabled for many years and is unlikely to recover, but we keep hoping.

The three of us, she and her father and I, will spend a long weekend together, at a rented house north of here on the ocean. Travelling is physically quite difficult for her, but we enjoy these times together so much that she navigates the airports, getting a wheelchair from the airlines, and then rests after the trips. We hope the skies will be clear so we can go out and lie in the grass and watch the Leonid meteor storm Saturday night. In the mornings, we make toast and tea, pack them up with binoculars and a blanket, and take them down to the water, where we watch the seals play. We're building a tiny house there, a three-minute walk from the beach; it might be done for Christmas. The occasion for this trip is a memorial service for the contractor who was working with us on the house.

I keep thinking about something I said in a message earlier this evening. I think I said people DO die from this disease, especially if they don't get appropriate medical treatment. I should have made it clear that, without appropriate medical treatment, this disease will be fatal. Reference books say that death follows within two years without treatment. However, I think several people in this group believe they had it for longer than that before being diagnosed and treated.

Harper

November 15, 2001

In a message dated 11/14/01 8:52:52 PM Pacific Standard Time, flatcat9@... writes:

The three of us

harper...have a GREAT TIME WITH YOUR FAMILY!!!!!

it sounds like FUN!!!...and RELAXING!!!!....

take care......

bert.

August 4, 2002

Message: 10

Date: Sat, 3 Aug 2002 21:25:49 -0700

From: "aisha yeoh" <aishayeoh@...>

Subject: Re: ; Debby-Disability

I wonder if age is a factor in the recommended lower dose of prednisone. Post-menopausal women tend to lose more calcium and are at higher risk for osteoperosis, a condition which would be further aggravated by the use of prednisone whose long term side effect is bone density loss. May I ask how old were you when you were diagnosed? I wonder how much calcium a post-menopausal woman has to take if she also takes a high dose of prednisone? As it is, for 40 mg at age 37, I had to take 1200 mg of calcium, which is plenty enough.

aisha

Aisha, I was 55 (white and thin pre-prednisone female) when I began taking 80 mg Prednisone (with 150-100 mg Imuran.) I was told to take Fosamax and 1200 mg calcium. A bone scan done a few months after I began Prednisone showed "immediate risk of fracture", but there is no way to know if that was pre-existing or caused by Prednisone. Bone loss is a serious problem, and so is bone cancer (from Imuran) but either kills you slower than a bottomed-out liver. You analyze risks and take your chances.

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Message: 12

Date: Sun, 04 Aug 2002 04:43:06 -0000

From: "savedbybunnies" <rbsteff@...>

Subject: Re: treatments

.. . . I've read that autoimmune diseases are linked genetically. That would definatley explain your family, huh? My mother has hypothyroidism, my aunt crohns . . .

Rhonda/TN

Rhonda, autoimmune diseases are familial and much more common in women than men. A recent article in the New York Times (which I have in my on-line files) discussed autoimmune diseases. It said that many researchers believe that all autoimmune diseases are differing manifestations of a single underlying disorder. It also gave the "cause" of autoimmune disease, speaking of this as a fact rather than a theory. I don't think you can assume that this is the final word on the cause, though. According to the article, autoimmune diseases arise during a pregnancy when fetal and maternal cells are exchanged through a leaky placenta. As I understand it, the problem can be carried through several generations; I could be wrong on that part, but I don't think so. The autoimmune problem might not show up for decades, and it could affect the mother, the child, or both. The more similar the mother and child (or grandmother) are genetically, the greater the chance of the cell transference causing an autoimmune problem. Interesting, huh? I do think it should be viewed as a theory only, although it does seem logical.

If anyone wants to see the article, I have it copied.

Message: 16

Date: Sun, 4 Aug 2002 12:26:38 +0100

From: " Bell" <arthur.bell1@...>

Subject: Re: PREDISOLONE

hi

my doctor has started to decrease my dosage i am on 60mg one day 40mg the next for 2 weeks then onto 60mg a day a 20mg the next for a fortnight - i have been doing this for 8 days now and feel rotten. I had actually been thinking im not sick just maybe not as able bodied as i was due to the nerve damage but now i am beginning to panic, my face is extremely puffy and uncomfortable - does the appetite decrease with the steriods - how do people manage not to eat constantly - does skin ever become normal again and more im portantly hair growth does it stop. I HOPE SOMEONE CAN HELP.

LOVE

CATHY

, please ask your doctor to explain thoroughly his or her rationale for the high-dosage off and on cycle. Sometimes doses are alternated in hopes of stimulating adrenal gland production, as the adrenal glands can shut down and not restart with prolonged Prednisone use. However, I thought that was done when you were down to extremely low levels of prednisone. I'm not surprised that you feel awful; I hope you will find out if this treatment is necessary. Your doctor may be trying a very sophisticated means of treatment that we're not familiar with. Or, he or she may be on the wrong track.

Acne is very common with high levels of Prednisone use. It goes away as the dose is reduced. Guard against skin infections, especially if you're taking Imuran or any other immunosuppressant.

As for hair growth, I don't know if you mean face or body or head hair. Facial hair, for women, tends to increase and show up in odd places. (I got thick, silky white fur around my eyes!) It goes away as the dosage is reduced. In the meantime, you can try clipping with baby scissors, shaving with an electric razor, or using Surgicreme. Someone said their doctor had okayed Surgicreme for liver patients. I bought some but didn't try it. Remember that your skin is unusually thin and delicate at this stage and that you're vulnerable to infection. I found even eyebrow waxing to be too rough until my Prednisone dosage was reduced. People report that head hair tends to fall out but regrows quickly when the dosage is reduced; that was the case for me. Men in the group have said they've lost body hair.

Some people say they have had good results maintaining their weight by following a low-carb diet. I think you should check with your doctor before doing anything extreme. My GP told me she didn't think I could avoid gaining weight (80 mg Prednisone) and was more concerned about my getting enough nutrition and avoiding the stress of dieting. However, I was very ill, and she later said she didn't think I would live long. So, maybe she just meant "Have a hot fudge sundae now, have two; you may never have another chance!" Seriously, she suggested that I eat BEFORE I became extremely hungry. She said "Listen to your body and be kind to it." I find that if I let myself get extremely tired I go on a rampage for high-calory foods I ordinarily wouldn't care about.

Harper

January 14, 2003

....exotic is the wcrd, but actually it was only a baby one.....

you seem to be the only one who got that or the others are too

disgusted......it's tough being practically the only male who writes

regularly.... good to see you back on line!

love jerry

June 1, 2003

Are you doing probiotics also? If not, you need to, along with some type of

yeast aid, like GSE.

Various

Does a skin test done by an allergist that says Zeb has no milk or

wheat allergies(no foods that they tested for), does this hold true

with others, does this mean he is really not allergic to these? He

was dairy free for about 6 months while I tried to resolve his

constipation and no changes occured. I definitely think he has yeast

and or bacterial issues and I want to test him, what test does Great

Plains do for these to issues, what is best to start with for yeast

and bacteria. He was started on AFP last week, I have seen quite a

bit of emotional reactions like crying and whining which are not

common for him, not listening and being defiant which is also not

him, he has been stimming a little more such as grabbing his tongue,

spinning, and he has not wanted anyone to touch him much. WHat does

this mean? Should I stop or wait it out? He is barely getting 1/4

cap with breakfast, he also get ZPrime, Carnosine and EFA's but has

for along time. Thanks ALisha

June 1, 2003

Just because the skin test doesn't show an " allergic " reaction, doesn't mean

that the gut is capable of handling milk products. We too had skin prick tests.

For us the blood tests were more reliable indicators of where we were, most

unbelievable was the malabsorption, considering that as a baby he had such a

healthy and complete diet. For us, just because the food was going in, didn't

mean it was nourishing.