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Welcome to Butterfly News October, the newsletter from The Lupus
Site - www.uklupus.co.uk
I'm proud to announce that we are now over the 2000
members mark! Let's aim for 5000 in 2003!
Thanks again go to Shar for this month's article.
~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o~o
Lupus & NSAIDs - Between a Wolf & a Hard Place
With a disease as hypersensitive as Lupus, everything
we inhale, ingest, inject, rub on, soak in or insert is potentially
suspect, because of chemical interactions and the way our Lupus
might react. For every potential good in the drugs we take to manage
inflammation and pain, there is an offsetting potential for harm.
As basic self- protection, we need to learn the facts of each medication
prescribed for us and, after discussing with our doctors why they
believe a drug is recommended in our situation, make a thoughtful
personal decision.
Some of the knowledge we gain will be encouraging
and some will be disturbing but together, it can help us craft techniques
for coping with this disease. We can't win a game of hide and seek
with the wolf, especially if we're playing in the dark. This is
not an illness with easy answers so learning to gather and analyze
pertinent information is imperative. On the verge of a new year,
we can make a resolution to arm ourselves with knowledge, face forward
without flinching and weave a muzzle for this meddlesome wolf.
Gathering information online can be mind boggling,
since so much material isn't dated and often is obsolete or just
plain wrong. The best sources for drug information are reputable
medically based clinic or watchdog sites with drug information centers,
like the Mayo Clinic's at http://www.mayoclinic.com/findinformation/druginformation/index.cfm
and the Internet Drug Index at RxList http://www.rxlist.com/. Even
good sources may not have timely drug warning updates, so stay current
with Public Citizen at http://www.citizen.org/hrg/drugs/index.cfm
and the United States Food and Drug Administration (FDA), no matter
where you live.
No one medication, whether prescribed or over the
counter, a basic NSAID (nonsteroidal anti-inflammatory drug) or
a muscled-up NSAID like Vioxx or Celebrex, is ever right for all.
When we're taking more than one medication at a time, they can create
a wide, wild and wacky range of interactions. Add in vitamin and
mineral supplements, herbs and homeopathics and our bellies can
become bubbling cauldrons of chemical conflict. Many medication
side effects, such as itching, nausea, dizziness, or vertigo, are
also symptoms of lupus, FM or other autoimmune illnesses. This makes
it more important to record and report our symptoms.
If you've had G.I. troubles, especially bleeding,
gastritis or ulcers, uncontrolled high blood pressure, kidney or
heart disease, you need to discuss the use of NSAIDs with your doctor,
preferably beforehand. Pregnant women are advised to avoid NSAIDs
altogether, since a Danish study found a connection to increased
risk of miscarriage. Some NSAIDs, like naproxen (Aleve), increase
photosensitivity, so, if we take them, we must reduce our exposure
to sunlight.
Naproxen and Arthrotec, like aspirin and ibuprofen,
should be taken with food and a glassful of milk or water. Celebrex
should be taken with a full glass of water, with or without food
(but with may be gentler) and Vioxx with water. NSAIDs may cause
heartburn, dry mouth, mouth ulcers, dizziness, nausea, headache;
gas, diarrhea, constipation; fatigue or general weakness, irregular
menstrual cycles and/or depression. Sounds familiar, since they
come as a bonus with lupus but with medications thrown in, it can
be a double whammy. You may not experience severe drug side effects,
since every individual and every case of lupus is unique but it's
sensible to know the particulars.
NSAIDs can cause stomach problems such as excess bile,
ulcers and gastrointestinal bleeding. Celebrex and Vioxx, COX-2
inhibitor NSAIDs, are meant to protect against such problems but
can't prevent them and tend to cause problems that may be worse.
A recent study reveals a four times higher rate of heart attack
among people taking Vioxx than those on naproxen. This rise is low
for the average user but not for those who've had previous heart
problems. Those with arthritic diseases are already considered to
be at greater heart risk, especially those with lupus. Merck, makers
of Vioxx, now recommend that anyone taking Vioxx and not allergic
to aspirin also take a daily baby aspirin, to reduce the danger.
It's not clear if the increase in heart attack risk
is peculiar to Vioxx or common to COX-2 inhibitors since Celebrex
was not tested. The FDA is considering warning labels for both and
more research is underway. Such NSAID side effects, including liver
damage, are considered rare and usually occur in people with pre-existing
conditions. In extremely rare cases, people taking naproxen, ibuprofen,
sulindac and rofecoxib (Vioxx) developed menningitis. Those with
AI disease like SLE and using NSAIDs may be more susceptible to
this rare risk. Although hospitalization is essential, there've
been no reported deaths from this complication.
Put NSAID use on hiatus for a few days before surgery,
since, as a drug class, they interfere somewhat with normal bloodclotting.
Each NSAID's time-out period may be different so please discuss
this with your doctors. Check pre-surgery instructions, drug interactions
and more at http://www.asiamedicinenet.com/script/main/forum.asp?
li=AMN&ArticleKey;=491 AsiaMedicine's detailed lupus page.
A kidney function study was done among 75 people
from sixty to eighty years old, in good physical condition. The
participants were divided into three groups, each getting either
COX-2 inhibitor rofecoxib (Vioxx), COX-1 inhibitor indomethacin
(Indocin) or on placebos. Both the Vioxx and Indocin groups showed
reduced kidney function. In a COX- 2 study done on mice, kidney
impairment was clearly linked. Anyone over 60 years old and using
any NSAIDs is advised to ask your doctor to regularly monitor your
kidney function for serum creatinine and creatinine clearance.
In Butterfly News, June 2002, I wrote, "Celebrex...Vioxx...are
loaded with serious and potentially fatal side effects and are the
subjects of current lawsuits. They've also shown no evidence of
being appreciably better at easing inflammation than cheaper and
safer non- prescription anti-inflammatories such as ibuprofen."
In Newsweek, at http://www.msnbc.com/news/578553.asp?cp1=1 Dr. John
Klippel, medical director of the Arthritis Foundation, the leading
national arthritis research and advocacy organization discusses
NSAIDs, including Vioxx and Celebrex.
Several new medications, once proudly trumpeted, have
been quietly withdrawn in the last few years, while others have
had warnings added to their labels and, so far, none do the trick
of taming this wolf. On October 28th, the FDA, together with drug
manufacturer Pharmacia (Pfizer), issued warnings http://www.fda.gov/medwatch/SAFETY/2002/bextra.htm
about the use of Bextra (valdecoxib). Bextra had been approved for
treatment of rheumatoid arthritis, osteoarthritis and severe menstrual
pain.
Bextra causes reactions in soft tissue and extremities,
including red rashes, shedding skin, blistering, deep sores or lesions,
mucous membrane ulcerations and more. Bextra can cause anaphylactic
symptoms, including throat swelling, constricted breathing, swelling
of other tissues and sudden blood pressure drop. These reactions
can send a person into shock and should be taken very seriously.
Those who are allergic to any Sufla or sulfonamide-based medications
are at exceptional risk and must not be prescribed Bextra, any longer,
under any circumstances.
Some people developed Stevens-Johnson syndrome after
taking Bextra and studies indicate a potential predisposition towards
SJS in those with SLE. Primarily a short-lived, drug-induced disease,
SJS has been linked to over 100 prescription and other drugs, including
acetaminophen, antibacterial sulfonamides, corticosteroids, anti-
convulsants, chlormezanone, allopurinol, cocaine or oxicam NSAIDs.
Although Bextra has not been recalled, several other new drugs were
discontinued for causing SJS, after deaths or disabilities were
reported. eMedicine at http://www.emedicine.com/EMERG/topic555.htm
has an article on SJS. Visit the SJS Foundation at http://www.sjsupport.org/
for more information.
While both the FDA and Pharmacia agree that such reactions
to Bextra are rare, the FDA adds that the frequency of such reactions
can't yet be determined. They advise that those taking this drug
cease immediately, if they've had any respiratory symptoms, skin
dryness, itching, sores or any skin problems whatsoever, no matter
how minor. They issue no warnings for those who have not had problems,
leaving the choice of possible future risks up to the individual.
Read the FDA Talk Paper at http://www.fda.gov/bbs/topics/ANSWERS/2002/ANS01170.html
and 2002 Safety Alert - BEXTRA http://www.fda.gov/medwatch/SAFETY/2002/bextra.htm
to make your own best decision. See an FDA warning on Methotrexate
at http://www.pharmcast.com/WarningLetters/LatestWL.htm in an archive
of FDA drug warnings
If you have an unpleasant or abnormal reaction to
any medication or homeopathic, it's important to note the details
and inform your doctor immediately. Keeping a record of our medications
and dosage times makes it much easier to track any unusual reactions.
When reporting incidents to our doctors, it's smart to insist the
information be entered into our records and, in the U.S., an FDA
report filed. By ensuring negative incidents are recorded, we can
add crucial and possibly life-saving information to research and
public records. Such protective actions may someday save your own
life or the life of someone you love.
Medications, especially those used to treat diseases
like cancer and lupus are inherently dangerous or they simply wouldn't
work. Ultimately, careful balance and attention to detail make all
the difference. Every authorized drug must go through rigorous testing
and can be recalled. Herbal supplements have no such protections
so that dosages and quality are not standard and hucksters are making
it rich. Often, what's on the label isn't in the package and what
is might really hurt you. For one list of dangerous diabetes drugs
masquerading as Chinese herbs, see http://www.diabetes- midon.org/Archived/ChineseHerbs.htm
and be careful.
Taking medication for lupus has often been like hunting
ants with nuclear weapons but many researchers are switching tactics.
About 30% of people with lupus develop kidney disease, either lupus
nephritis or lupus glomerulonephritis. A new medication now under
study may eliminate the need for prednisone and other noxious potions.
Once again, mice have volunteered as test subjects and, considering
all they've done for us, perhaps they should be an emblem of lupus
like the wolf, willow and butterfly.
This new drug, a benzodiazepine titled Bz-423, is
related to anti- anxiety medications like Valium and Xanax. It reduces
kidney inflammation without damaging the immune system, a new and
welcome accomplishment. According to the Journal of Clinical Investigation,
Bz-423 won't cure lupus but researchers believe it might actually
arrest the progression of kidney damage. Nowdays, corticosteroids
like prednisone, immunosuppressives, and cytotoxic drugs are used.
These drugs mix a potent but indiscriminate molotov cocktail, killing
healthy and bad cells alike. Researchers are encouraged that this
new drug zeros in only on the cells it's meant to kill, leaving
healthy cells alone. If all goes well over the next few years, this
could be a major advancement in the treatment of lupus.
There is serious, in-depth lupus research going on
right now, in many separate studies around the world but especially
active in the US and the UK. For the first time in history, this
disease is provoking attentive professional interest and finally
finding major funding. Researchers are studying our complex symptoms
and monitoring drug reactions. Defective medications can have warnings
slapped on them lickety-split lately - Bextra was nailed in less
than a year - and more wrong `uns have been recalled and discontinued.
We've got the mother of all autoimmune diseases and
a big bad she- wolf she is, indeed. Rather than poison our systems
with yet more hit or miss wolf-bait, researchers are learning to
use the inclinations of this disease against it. The new kidney
medication being studied is a dramatic change in method and should
lead to more therapeutic medications in the future. There is good
reason for hope among lupies nowdays and, as we stand on the threshold
of the new year, we can look forward to what the future may bring.
May you and yours be blessed this season and, whatever
holiday you celebrate, don't forget to celebrate your own life.
Merely managing to live with this disease is an achievement and
your own life is as sacred as any holiday. You bring your own gifts
into the world and there are others, perhaps unmet, who also have
much to share. Take heart, take courage and take hope in the advances
of medicine and in your own growth. We WILL win this wolf over!
National Jewish Medical and Research Center has a
Cold and Flu Season Primer at http://nationaljewish.org/topic/cold_flu.html
Holiday links for you -
Playing the Moonlight Sonata From Memory - Celebrating
the Wonders of Our Difficult Life - by Lawrence J. Hergott, MD A
wonderful piece, in which a doctor calls on other doctors to reawaken
their own compassion. http://jama.ama-assn.org/issues/v288n20/ffull/jpo20211-
1.html
Art in Medicine - artworks by John Saito, MD, based
on his experiences as a caring doctor. http://www.amednews.com/content/pick_02/prsb1202.htm
Copyright © 2002 Shar Phoenix. All Rights Reserved.
Please save this link to my archive-in-progress. My
work is mostly in lupus but there'll be other writing too. My lupus/medical
links list will be pre-screened, to save you stress when researching.
Look for my work at Healing Well soon, too. It's all going up a
little at a time so, y'all come back! http://www.authorsden.com/sharphoenix
http://www.healingwell.com/
Butterfly News
© 2002 Joanne Forshaw
Must not be reprinted in any way without prior permission from the
author. Any queries or suggestions - [email protected]
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