Candace.  Sorry about your son's problem, and you too have my sympathy.  A
child's pain is a mother's pain also.
I just have OA so can't help you any.  I'm sure others will be along to give
you their experience.
Gwen

Not sure where you are at, I am in the US.  If his medical condition is that
bad then tell him to apply for SSI.  That should help take care of him and
help him with his medical needs.

Jennifer

Candace I am sorry for your son's troubles but there is hope, once they
get the diagnosis right things begin to improve rapidly. Can't say I
have any help to offer on the insurance side. If you let your Dr. know
the costs are a real burden they might be willing to try a cheaper
alternative like methotrexate. I was diagnosed with PA better than ten
years ago (at 40) but once I started methotrexate I haven't looked back.
I was able to return to work once the swelling cleared up and have never
had anything really bother me. I've been able to move all over the world
and stay active. A couple of years ago my Dr. started me on a mix of
Methotrexate and Humaria. The Humaria didn't work for me so I am now on
a mix of Methotrexate and Embril and still humming along.

The short answer is have faith and keep a positive attitude. Work with
your Rheumatologist, the right selection of drug treatments is out there.

Ralph

Hi Candace,

I can speak specifically to Humira - I'm on one of the earlier biologic meds,
Enbrel.  But, I too have psoriatic arthritis (aka: PA or PsA)  Mine first hit
me bigtime when I was 28 so I know how your son feels about having something
like this hit when so young.  The good news is that PA often takes a
different course than RA and can even go into remission, or near remission,
after bad outbreaks.  That happened with me - at one point my rheumatologist
(RD) fully expected me to be wheelchair bound, unable to hold a pen within a
year (he didn't tell me this until later, after it didn't happen!).  Instead
it slowly calmed down over a period of several years and I had 6 or 7 years
in the 90s when I was doing well on just ibuprofen before it went nuts on me
again.

Meanwhile, I gather the doctor he is now seeing is a rheumatologist?  A
diagnosis of PA is pretty unusual from any other kind of doc, except maybe a
derm - same with prescribing Humira.  But just in case he isn't seeing an RD,
he needs to be.  They know far more about this stuff than other docs.

Some other folks here have been put on humira, mostly for rheumatoid
arthritis.  They may be along to tell you more about it, but you can also
search Google groups for posts on humira on alt.support.arthritis and you'll
find earlier discussions about it that might help.

As to cost, there really isn't any help out there for folks who have some
prescription insurance but are hit hard by the co-pays on the fancy, newer
meds.  It would be a good idea for him to let his doctor know that the
co-pays will be hard on him - they might be able to try a different
medication.  Depending on where you live, there might even be some clinical
trial in the area that he be part of to get the medication.  I've found most
docs understand medication costs are a burden for patients in the US these
days and they do what they can to help.

You might also want to ask on alt.support.skin-diseases.psoriasis - there are
many knowledgeable folks there, though the group isn't nearly as busy as this
one.  Also the National Psoriasis Foundation (website is www.psoriasis.org)
is a wonderful resource for information about PA and psoriasis.

Hi Candace.  I have some idea of how hard your son's diagnosis is as I was
diagnosed with RA at the age of 17.  It hit me like a ton of bricks the day
after I rolled my car off the freeway.  I blamed the accident for a long
time afterwards but, looking back, I can see the signs that it was there a
year or two before that.  Couldn't straighten my elbow, my hips were
terribly achey once in awhile, and one of my ankles would just be killing me
halfway into my waitressing shift.

It took about a year to get the diagnosis and when I did, I absolutely
couldn't believe it.  It was a year of complete turmoil because I couldn't
accept the fact that my life would never be the same again.  I was very
angry with the old "it's not fair" routine.  I've been diabetic since the
age of 5 and here was *something else* that made me different.... blah blah
blah.

Eventually I worked through all of that and accepted it.  Once I did, life
got back to normal, at least emotionally, and I found different ways of
doing things.  Like opening swinging doors with my butt or my arms instead
of my hands.  Or learning to wash my face with one hand instead of two.  And
getting an electric toothbrush instead of struggling with a manual.

As a mom, we always want to protect our kids.  My mom still struggles with
my disabilities and I'm 51 years old!  But it is what it is and there is
nothing that is going to take it away.  That's the bottom line and the best
thing you and your son can do is to find  a way to accept it and then go on
from there.  I wish I had some magic words that would make you feel better
but I don't; only honesty.

  ~Lindy~ who took her first Humira injection yesterday
  WOOOO HOOOOOO!!

Once again, I want to thank all for their kindness and good wishes.  Brandon
is seeing a rheumatologist, who actually has psoriasis.  Not sure if he has
PsA, but...

Brandon got the shot today, actually gave it to himself.  Said it was a
little scary, but not so bad. I will keep all posted as to his progress.

Cande

Dont have any answers for you. But wanted you to know I feel for you. I know
how it is with a child that has medical problems. I wish the best for all of
you and will keep you in my thoughts.

Candace,

You sound like my mom - she said the same things when I was diagnosed
with PA.  I am only 30 and was diagnosed last October, so I totally
understand what you & your son are going through.  I work as a legal
secretary, and my PA was attacking the joints in my fingers & hands.
My insurance refused to pay for Enbrel &/or Humira when I was first
diagnosed.  I had to try Methotrexate (MTX), which is cheaper, first &
have it fail to control my illness before I could re-apply for any of
the biologics (cheapskates!).  Fortunately (or unfortunately, depending
on your perspective), the MTX cleared up my Psoriasis, but did nothing
for my PA.  In March, my insurance company had no choice but to let me
get the Humira (I am allergic to sulfa drugs, which are components of
most of the other inexpensive PA meds).  Humira has been a miracle for
me (YMMV).  As of now, I have no signs of P or PA.  The swelling in my
joints is gone & I feel better than I have in quite a while.  I am
still taking MTX, since it helps the Humira work better.  My RD is
slowly lowering the amount of MTX I am taking, though, hoping that I
can quit it completely.

I think there is a link (or phone number) on the Humira website for
patients who need assistance paying for their medication.  I'm sorry I
didn't respond to your email earlier, I have been away on vacation.

Please let your son know that he is not alone & that he shouldn't give
up hope.  Scientists & Doctors are learning more about P & PA every
day, which is leading to more & better treatment options.  You have
come to the right place to find people with good ideas & experience
dealing with what Arthritis can do to your life.  Please let me know if
I can be of any other help.

HTH,

Plantmistress (Shannon)

Is he eligible for SSDI -- social security disability insurance?
Persons who have worked and become disabled before age
31 are eligible with fewer qualifying quarters than older workers.
Military service, if any, counts towards those qualifying quarters.

SSI - supplemental security income?

Medicare (MediCal in California)?

The latter 2 are "welfare" benefits and have income and assets
limits.  SSDI is NOT welfare - it has been earned by working,
has no assets limit and a $600 or higher monthly income limit.

... Apathists of the world ... ... ahh, forget it!