I'm going to have to complain a little
now! It took 3 months to get an
appointment with a new rheumy. My old
rheumy, who I loved, lost two years of my
records! They had my first appointment
in '94, and then no appointments until
late in '97. Fortunately, I keep my old
appointment books and went through them,
and lo and behold had about 30 appointment
for the next couple of years. And they
lost them! I ended up in the hospital 3
times because of lupus and adverse
reactions to meds like plaquenil, when I
threw-up for 3 months.
Now I show up 30 minutes early to
fillout paperwork, sit patiently, have
copies of all my records, and copious
notes about my symptoms for the last 5
months, and I was kept waiting 1 hour and
45 minutes not counting the 30 minutes !
Worst of all, I felt great that day! I
know this sounds like a good thing, but
the day before my pain and inflammation
was a 9! So, as I described my symptoms
of late, I looked perfectly normal.
After the doctors examination he, of
course, orders blood and urinanalysis,
which I no longer had time for because i'm
late for work, he annouces that his
treatment of choice for lupus is nothing!
I was struck dumb. Nothing! I will
have my tests done since it would take me
another 3 months for a new appointment,
but I am so deflated i'm not sure what to
do.
Mia
|
lupusfibrochick
New User, Becoming EHEALTHy
Joined: 29 Mar 2004 Posts: 3 Location: Los Angeles, CA
New Rheumie Posted: 03-29-04 16:02pm
Wow, mia! Sounds like a heckuva struggle
you are having! Why does it take 3 months
to get an appointment with this guy?
Either he is a very popular doctor or do
you have an hmo? In any case, I totally
understand your frustration. Making you
wait 1:45? That's pretty rude! And what
kind of rheumie thinks a good way to treat
lupus is to do nothing? Makes no sense to
me and scares me, too!
Plaquenil really helps to keep my lupus in
control, but you said it made you throw up
for months! That is terrible! I hope
they can find something else to give you
some relief. Prednisone maybe? I gained
a few pounds on it, but it did help. Then
I stopped taking it and the weight went
away luckily. I hope you can get
somewhere with this doctor or find another
one. How long have you had lupus? How
severe have your symptoms been lately?
sherri
|
LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 03-31-04 04:09am
Mia:
ugh! That is something else! *hugs*
have you called to try another doctor? I
know changing is such a pain (as I am
going through it right now too), but i'd
be very concerned about a doctor that
doesn't keep in mind that lupus patients
very often look *normal* even when they
are not doing so well.
*warm hugs*
ladybrannon
|
mia
Experienced User , Rather EHEALTHy
Joined: 25 Jan 2004 Posts: 147 Location: dallas
New Rheumy Posted: 03-31-04 14:58pm
First, the new doc needed my old records.
''''''called the old rheumy didn't have
old records. Needed research. Took
three months to find my records and there
were 2 years missing. The two years
unfortunately, I was the illest. Now I
have to go to the new rheumy, with totally
incomplete records. I was in the
hospital three times and had adverse
reactions to several medications.
Of course, i'm hoping next time I feel
completely terrible! Haha!
Mia
|
leucara
New User, Becoming EHEALTHy
Joined: 01 Apr 2004 Posts: 33 Location: Los Angeles
Hmmmm Posted: 04-01-04 18:02pm
Mia-
I am sorry to hear that you have
problems with plaquinil. After about 6
weeks a got a really itchy rash and I get
acid reflex from it but that's about it.
Did you get these side effects too? Well,
after I went to see my doctor he said that
the other anti-malarials will cause the
same problems
and that the only thing that is offered
other then anti-malarials is steroids.
Have you heard of mirac? It's a
supplement. It helped me a lot! Check it
out on the internet. It's only for lupus
and it's all natural. Read the
testimonials.
Shawna
|
mia
Experienced User , Rather EHEALTHy
Joined: 25 Jan 2004 Posts: 147 Location: dallas
Hmmmmmmm Posted: 04-02-04 13:08pm
I was on plaquenil 8 years ago and threw
up for 3 months even though they lowered,
and lowered, and lowered the dosage. I
have not heard of mirac, what is it? I
have had problems with some supplements.
Do you know it's biologic origins?
Thanks for the reply,
mia
|
leucara
New User, Becoming EHEALTHy
Joined: 01 Apr 2004 Posts: 33 Location: Los Angeles
Hmmm Posted: 04-02-04 18:26pm
Hi. I cant find my bottle but if you do a
internet search with the work mirac it
will pop right up. It did help me. A lot
of people take it instead of plaquinil.
Or they come off of plaquinil and take
mirac. I know it is vitamin c plus some
kind of extract from pineapple. It claims
to block the gene that causes lupus.
There is a lot of information there on the
website to read. There is so little that
is offered to us from doctors and I know
most of the anti-malarials act the same.
If you cant take one of them then it is
unlikely that your body will be able to
tolerate the others. Do check it out.
I have been known to wait nearly 2 hours
to see my doctor. My established doctor.
They've created a different system now
though that they only schedule one
appointment per hour.
She's the only doctor in her office and
she was great. I was perturbed at the 2
hour wait but you couldn't have paid me to
go to someone else.
Now I have to because I don't live in that
city anymore. And with this new doctor,
even though it was a "consultation" (more
like "tell me your lupus lie story) he was
an hour late.
Funny as hell though, the new guy.
I am very lucky to have the doctors that I
do. I wish I could spread this good
fortune everywhere.
Clarebear
|
mia
Experienced User , Rather EHEALTHy
Joined: 25 Jan 2004 Posts: 147 Location: dallas
Clarebear Posted: 04-07-04 11:55am
Did you say lupus lie story?
That's exactly how I felt when I finally
got in to see my new rheumy. My
internest had prescribed about 5 weeks of
prednisone, broken up here and there, over
a three month period. So by the time I
got to see the new doc, it was no wonder
that most of my symptoms had gone away.
Between the medicine and plenty of rest, I
felt fabulous by the time I had my
appointment. What a bummer!
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This page was last updated on June 11, 2008
sherri
