I had replied in the affirmative to the suggestion that I might write an
article on Autoimmune Hepatitis for glorious Cysterwigs.
However, having been humbled in the interim by all the brave women who
have lost their hair to cancer and PCOS, I have come to admit that my real
issue with hair loss has been caused by my medication, not the AIH itself.
I did have a total mastectomy in spring of 2011, for ductal carcinoma in
situ. Happily, it was caught so early, it was at "stage zero." After
consultation, my surgeon and the oncologist agreed that because of AIH, it would
be foolish to Rx any chemo "just for safety's sake," because my liver could
never have tolerated that.
So, there I was, with "one headlight gone," as I like to say, but I didn't
have to go through all the hellish chemo and attending torture that most
women experience. This makes me feel guilty; something I can't quite
Because I had an autoimmune disease, reconstructive surgery was out of the
question. My immune system would have just attacked the artificial implant
with great enthusiasm--it would have "seen" a foreign body. (Young women
should know this before they go out and get "boob jobs." They may well end
up with lupus, or, at best, required removal of said implants after massive
infection and rejection.)
I do require bi-yearly exams, but the probability of cancer recurring in
the scarred area is less than 5%.
I have much anger at autoimmune diseases, and the medical world's apparent
helplessness regarding them. Because they affect more women than men?
I've secretly thought that for years.
So does my husband. As he points out, god forbid a man can't have an
immediate erection. "The medical world has spent billions of dollars on research
for drugs that can cause blindness, but, by golly, you'll have a four-hour
woodie!" (I take no credit or blame for that tacky statement. It was my
dear spouse's own comment on the state of medical-mindset in general. I
actually cleaned it up a bit.)
Let me get back on track. My hair loss has occurred twice since my original
diagnosis with AIH in Feb. of 2008. One is put on a large dose of
Prednisone and the drug is tapered slowly over several months.
I have NO idea who responds to this iron-clad formula, because each time I
have tried that relatively quick tapering off, my liver numbers shot up as
high, or even higher than they had been. I must take Prednisone for two
and a half years, minimum, to achieve remission. Going into remission in
mid-2010, I was so thrilled!
This meant that my bones weren't being eaten by the Prednisone, that my
joints weren't dissolving, and my heart valve wasn't deteriorating! These
are the worst problems with Prednisone.
Secondary ones are having practically NO immune system left to battle even
the common cold, immense weight gain, "Moon Face," and unwanted facial
hair growth. Oh, and acne.
These latter things I was more able to take in stride because I was already
57 years old, long-married to a wonderful man, and relatively secure in
life. But I did have to wear a face mask for those 2 1/2 years, and put up
with all the stares and questions.
Again, given my age, that was of minimal worry. None of us owe anybody.
If they don't like what they see, I always figure, look the other way with
Then, after three glorious years in remission, my AIH came back--reasons
unknown, of course, and was twice as bad as the first time. The MD tried his
silly "taper-down formula" again, and I went along with it, again, knowing
better. Boy! Was that a dumb idea! It came back on me like a hurricane!
Even higher liver numbers. This time he went with a REALLY high dose on
top of a high dose only 4 months before, and I lost well over a third of my
hair. Talk about P O'd.
In April of 2016, this year, I went off and have been off Prednisone. My
numbers are still down. I am hoping and praying that I have bought at
least three more years of remission, but can't afford to take anything for
This time, I'm very sad because last summer, I tore a ligament in my right
knee, for no reason, and the most brilliant of my many MDs thinks it's
because of the Prednisone. I think he's right.
So, what does my GE think about all this? He thinks it's partly my own
fault for refusing to take Imuran, a drug many GEs use with Prednisone for
Here is where I don't want to frighten or influence even one person on
your web site.
NO ONE will make me take Imuran unless I am truly in the process of losing
Prednisone can contain this disease in most cases, although it is
definitely poison to the entire body. But Imuran? I enlisted (eight in all, 2
PhDs in Pharmacy) my MD relatives from all over to send me everything they had
on that drug. You should read all the doctors-only, PDF files I received:
"Female patient, 46, took Imuran for six months, did well, then developed
lymphoma and died within two months." Two months???
Over and over again! All these case studies that the average person will
never, ever see!
True, there is a genetic test that can be given, (and I passed it) which is
supposed to determine whether or not one can tolerate Imuran. But THIS
babe isn't going to go there. Not until it's Imuran or nothing.
A merry nurse I passed in a hospital hallway (RNs--wonderful, cheerful,
hardened beings that they CAN be in some cases) told me about a woman she
knows who is fighting the last stages of AIH in order to outlive her daughter,
who has a virulent form of cancer. The 50-some mom wanted to be there for
her 30-year-old child, because that's what moms do. They try to protect
and care for their children, right to the end of their lives; theirs' or
their childrens' lives.
That story nearly had me in public tears in the hospital corridor. It
still haunts me.
So, with Imuran being prescribed for so many people with AIH, I don't want
to set down any commandments against either that drug or Prednisone.
I owe my life to Prednisone, and I also owe Prednisone my thinned hair.
To a woman, no matter what her age, hair is THAT important, as you and all
at Cysterwigs know. (I consider you folks the Mother Theresa of wig
sellers. You provide understanding and a shoulder for your customers.)
I don't really want to say anything about AIH in a formal way, because I
can't speak for any person but myself. There is no way to avoid AIH. It is
rare, it can often be genetic. There are no precautions, really, but these:
don't ever get Mono, and don't take Lipitor, but then, few people who get
Mono actually asked for it--I got mine from teaching high school
students--one only has to be in the room with an infected person who is BREATHING,
to get it. (One certainly doesn't have to kiss the carrier!)
And no one should trash Lipitor because some people benefit from it. I took
it for years, while my cholesterol continued to rise. My problem with
cholesterol is genetic, not dietary. The Mayo Clinic implicates Lipitor and
its related pals in some AIH cases. But I can't put that out there and have someone take it as gospel, just because they read it online. Let them read that on the Mayo Clinic site, not yours! (EDIT from Heather: I will keep this in here with THIS link to a National Institutes of Health article that also backs up this claim. It's valid, so we think it's important enough to keep it in here.)
By the way, Imuran is an "orphan drug" in the treatment of AIH. It was
intended as an anti-rejection drug for people with donated organs--kidneys,
livers, etc. It's quite effective in this area, unless it kills one in the
process, of course.
Often AIH patients take a combo of Prednisone and Imuran for years. They
believe that Imuran lessens their moon face a bit. If that's so, more power
to them. May they live forever in good health, and I say that prayerfully.
But regarding what MDs really know, Imuran isn't a safe bet for all. And I
don't want to take it until I'm near end-stage.
That would be when inflammation of the liver has gone on so long, the
organ just quits, as it would in an alcoholic, or when the annoyed liver
develops cancer, due to inflammation. I do know what the liver doesn't like, I avoid red meat (if one has any liver disease, or while one is in the active stages of mononucleosis, beef is the enemy) and I have given up coloring my super-dark brown hair.
To cover the onset of gray, I'd gone to Clairol's "Beautiful," since I
never liked the idea of bleach on my too-curly hair, and using a medium golden
brown lotion-style color gave me nice highlights. But any chemical color
is bad for the compromised liver. Sadly, natural alternatives, even the best
henna, won't cover or even tint my gray.
And bleach irritates the scalp. Turns out that the scalp is one of the most
tender and easily penetrated parts of the body when it comes to
chemicals--which you folks know. I was even forbidden to paint rooms in our
house--latex fumes must be filtered by the liver, as do all nasty chemicals in the
Okay, I'm digressing.
The bottom line: I truly am not in a position to influence anyone's
decision about Imuran, and certainly not Prednisone, since I owe so much living
to that drug. No one should ever listen to another layperson, or even an
MD. One has to do the research and choose the options for oneself.
I told my doctor early on that I'd rather die inch by inch on Prednisone,
than suddenly, from Imuran. Now, I'm eating my words, what with my gimpy
right knee, but if it weren't that at age 65, it would be likely something
Wish me luck on my newly-won remission. I hope it goes all of three years
again, this time. The AIH will return, but I now know to lay off the beef
and the hair color, too.
Thanks so much for extending the invitation to write on your forum about
AIH. I appreciate the vote of confidence from your very literate site.
If I've said anything that made sense to you about AIH, by all means, use
it, under a nom de plume. But I, and you, must be wary of spreading
personal opinions as facts.
May the Universe bless you, Gina, Heather, and all at Cysterwigs. What a
humane and kind place on the Internet. It's like finding an oasis of
gentleness in the desert of this strange world.
Until next we meet,
Love to all,
Elder stateswoman, old gray-hair, happy wig-owner.