|
Home 
Featured Discussion
DMARDs
Disease Modifying Anti
Rheumatic Drugs-The People Say...
Disease Modifying Anti
Rheumatic Drugs, the five words that can bring total fear or total
relief to someone with inflammatory arthritis. This week we will be
talking about DMARDs in general and some specific drugs. We also want to
hear about your personal experiences with various DMARDs. Although it is
very important to remember that every person reacts differently to
different meds, personal experiences are important to many of us when
deciding our treatment options. Please
share your DMARD experiences with us.
We had a wonderful
response to our DMARD Survey. Most of you seem to have taken
methotrexate (mtx) at one time or are taking it now. It wins our most
common DMARD award! And the majority of you have stopped at least one
DMARD due to side effects.
Let's start this week with
some of your comments:
"The Enbrel has
helped me a lot. Most pain and swelling is gone. I've regained range of
motion, and muscle strength."
"I had to quit MTX
for about a year because of Leokopenia. Resumed MTX 2 months ago with 5
mg/week and lately increased to 7.5 mg./week."
"Give them time to
work. A week or two often is not long enough to know if the drug will
have a long term effect."
"I investigated RA
and treatment recommendations once diagnosed. Medical personnel seem to
think that immediate treament with methatrexate is best to prevent
further damage. Since my RA doctor started with sulfasalizine first, I
got a second opinion from a "veteran" in the field of RA who
now teaches. I paid this out of pocket. She agreed with my RA doctor
about his use of sulfasalazine first. I felt reassured, and, since there
is no more bone loss in my toe joints, I have to trust that it is
working.
My primary goal is to keep working full-time. Since I haven't had any
typical side-effects yet from sulfasalizine, I keep on with it. However,
now my sacroiliac joints are involved, with pain that is not fully
relieved with VIOXX. I am interested in personal stories from those who
use or used methaltrexate."
"Arava - I'm still
on it but after 3rd loading dose had a 5hour intense pressure headache
accompanied by disabling nausea. (That passed). White blood count began
to drop, but drs. dropped dosage to 10mg, and wbc began to climb again -
luckily I got to stay on it...for now.
The docs told me it would take 4-6 weeks to get any benefit from the
Arava. After the 2nd dose (there are 3 loading doses to start, and then
a maintenance dose) I felt an immediate improvement in all my symptoms.
If you're looking for a new DMARD, try this one!!"
"When taking
methotrexate, try to take it with LOTS of water. It really does help
reduce the side effects somewhat."
"My son, Joshua,
has Systemic Juvenile Rheumatoid Arthritis. He takes Methotrexate and
Plaquinel. Hard to know for sure if the plaquinel is working. He's been
on it for over 4 years. The Methotrexate he's been taking for more than
5 years as well, but about a year ago he switched from oral dosing to
sub q. Seems to have made a positive difference. Or it could just be
that he's in one of those less active phases. For the past 2 months he's
been taking sub q one week, oral the next. 15mgs a week. He's the only
person I've ever heard of that takes it that way. He convinced his RDs
to let him try, as he was tired of all the shots. Hard to know, really,
if the DMARDs are working in general, as he's never been able to get off
steroids. Between 10mgs and 35mgs per day, every day, for 5+ years. If
they were really working as well as they should, I doubt he'd have
needed this continuous long-term steroid therapy. But his JRA was very
severe, so we deal with it. He also takes NSAIDs twice a day."
"Sulfasalazine-The
first ones I had where the big horse tablets that are not coated. They
gave me horrible heart burn, yellow pee and for whatever reason they
made me stink (lovely thought huh?). I'm now on the coated tablets,
they're easier to swallow, no heart burn (well, maybe a little), pee's
still really yellow but I don't stink anymore. They worked fairly well
alone for a couple of months but I still had flares at least once a
week. They seem to work well with the methotrexate.
TAKE WITH FOOD!!!! Take at the same time everyday. 7 and 7 is when
I take mine. Make sure to keep an eye on your refills and that all
perscriptions are called in at least 5 days before you run out!"
"don't give up
hope. They do take a while to take effect. Make sure that you take all
your doses so you get the proper therapeutic level in your body."
"don't give up on
them too soon they all are pretty slow working. Try to adjust to the
side effects these are potent drugs after all & are doing strange
stuff to our bodies. Always have your labs done, if you can't afford to
see the dr that often be up front & see if you can have just labs
done for 2 out of 3 visits."
"Don't be afraid
to try these drugs as they will help at some point. The alternative is
not acceptable. Get educated on medications and build positive
communication with physician so options are always open.
It is good to compare how meds help or don't help each of us but its
important to remember that meds affect your body uniquely. Especially
important to reinforce this with newbies."
"I try not to
worry about the future effects of the medication that I am on, because
my quality of life right now is wonderful because of the medications.
That's what I try to focus on.
Positive thinking, prayer, education and hope gets me by. The computer
is a fantastic tool to learn all about the different DMARD drugs
available."
"Methrexate
and remicade infusions they are working excellent remicade is a God
sent"
Don't
forget to join us tonight (August 21st) at 9:30pm Eastern time in the Chatroom.
Dr. Barry Waters will be in to discuss DMARDs.
|
