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West Midlands Lupus
Questions
& Answers
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My daughter has lupus and has
been told to stop taking azathioprine due to blood test results and
the consequences of liver failure.
What are the implications and are there any alternative medications?
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Azathioprine can cause abnormal liver
function tests but rarely causes liver failure in lupus patients,
especially if the drug is stopped when abnormal tests are seen.
The effects of azathioprine are reversible. Other things to
consider though are: could any other drugs have caused the
abnormality, is there anything to suggest a viral infection
causing the abnormality and could the blood test abnormality be
due to lupus (but this is a rare manifestation of lupus)? There
are other drugs that can be used but which is best depends on the
patient and the answers to the above questions. And it would be
best to wait and check that the liver tests have returned to
normal before starting a new drug or changing another drug dose
except for steroids which could be increased if the lupus is
active. |
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I was diagnosed with lupus
because I had a positive ANA and positive SSB. Other doctors said I
didn't look like I had lupus and those tests could have been
positive for other reasons. What would the other reasons be? What
else could be going on other than Lupus? |
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These test results also occur in Sjogren's
syndrome, which is like a sister disease to lupus. They are both
autoimmune diseases associated with antibodies. Sjogren's is
typically associated with dry eyes and dry mouth, often with
salivary gland swelling under the chin or in front of the ears -
early in the disease. It is milder than lupus when it occurs as
the initial disorder (primary Sjogren's syndrome) but it can occur
as a secondary condition in someone with lupus, later in life, and
also can occur secondary
to other conditions such as rheumatoid arthritis. |
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My daughter has had lupus for two
years - the first symptom was hair loss
She recently has had a flare up and her hair has started to come out
again -
how long will it take for the steroids and Plaquenil to take effect?
She is
on 15 mg prednisolone - will she lose all her hair ? |
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NO, complete hair loss is very unusual.
Steroids work very quickly within a few days but Plaquenil takes
up to 3 months to have an effect (which is why you need both). The
problem with hair loss is that once it is weakened at the hair
root, it will be at risk of falling out and it may take several
months for new stronger hair to regrow. So the hair loss will
continue even after the drugs start working to prevent new hair
damage. |
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I am 28 years old and have had
SLE since the age of 15. I am now finding it is spreading to other
organs and my Dr wants me to go on Imuran. I am scared. What can I
expect from this drug and its side effects? I am getting married in
November and I don't want to have no energy from it or for my hair
to fall out but I have been on prednisolone for too long and can't
get off. Are there any other things that I can try first? I am
allergic to Plaquenil. |
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You should go through the risks with your
specialist in more detail. In principle, most people do very well
with this drug and it is used by over 40% of lupus patients at
some point in their disease. It is safer than using higher doses
of prednisolone (steroid) than you would otherwise need. There is
no safer drug if you can't take Plaquenil and it is more
effective, although there are more possible side-effects and
there is a need for regular blood tests to avoid complications. |
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My daughter has begun taking
Imuran. After only 3 weeks she developed what at first appeared to
be a blood blister on the roof of her mouth which then formed into a
large sore. Now she is experiencing severe fatigue and weakness. Is
this from the Imuran or is it a severe flare? |
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Your daughter needs to see her doctor and to
have blood tests done. Imuran takes up to 3 months to work so she
is not likely to have had much benefit yet and a flare of lupus is
certainly possible. A side-effect of Imuran is also possible,
probably less likely, but it is not possible to be certain either
way without a full assessment. Blood tests should be done 1 or 2
weeks after starting Imuran so this is urgent if a full blood
count has not yet been done. |
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My daughter is 11 years old and
was diagnosed with lupus last year during a regular check-up. She
has class 5 lupus nephritis (Protein in urine +++). She has been
taking prednisolone and plaquinile. When it was reduced to 30mg
every other day, she had a flare (rash on face). She now has one +
protein in urine. Doctor suggested to add Imuran (125 mg a day).
Other people suggested Cellcept. Could you give us some advice?
Also, how do you compare Imuran with other type of cytotoxic drugs? |
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It has been conventional to use Imuran (azathioprine)
in this situation for many years. Cellcept (mycophenolate mofetil)
is a much newer drug which is beginning to be used in lupus .
However there is still not a lot of evidence as clinical trials in
lupus are on-going, comparing it to azathioprine and
cyclophosphamide in terms of benefit and side-effects. It may be
more effective than azathioprine (more like cyclophosphamide but
with less side-effects) but is a great deal more expensive and in
many places it can only be used if someone has not responded to
azathioprine and/or cyclophosphamide, or cannot take them for some
reason. As her kidneys have improved there does not appear to be
any need to consider cellcept at this time, but it is always
important to talk the options over with the doctor involved, who
will have available to them all the clinical and laboratory
details about the case. |
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I have had lupus for about four
years. I have also had three flare ups of pericarditis. Does this
mean my pericarditis will be chronic or can it go away altogether?
I am on 75mg of imuran, 5mg prednisolone and warfarin for recurrent
deep vein thrombosis. |
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These are episodes of acute pericarditis and
may continue to occur intermittently. Chronic pericarditis is
rarer and as the name suggests is a chronic or persistent i.e.
long-term continuous problem. Most people with acute pericarditis
do not go on to get chronic pericarditis but it is possible.The
drug treatment should help to prevent further flare ups but the
doses are lower than average although this may be appropriate to
your weight. This should be discussed with your specialist. |
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I have just been diagnosed with
Lupus Nephritis class 5. Does that mean I have a higher chance of
renal failure some time in the future? |
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Yes, but this type of kidney
disease does not always progress to renal failure, and if it does
it may take a long time e.g. 10-20 years. With modern treatment it
may go away completely. Sometimes it changes into another type of
kidney disease with time and if so, it is more likely to cause
long-term problems if not properly treated. |
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(con'td): What
questions should I ask my consultant? |
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Suggested questions:
What treatment is planned? What are the possible side-effects and
how can they be reduced/avoided? How likely is it that this
treatment will work and get rid of the kidney disease? How long
will it take (i.e. how long on initial treatment and then what
will happen - usually therapy reduced and continued for several
years)? What happens if the initial treatment does not work? (If
not treated the disease certainly will progress to renal failure
requiring dialysis or transplantation eventually and there may be
a risk of other complications of active Lupus such as high blood
pressure, so any risks from the treatment must be balanced against
the risks of not treating the Lupus disease...) |
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I have had Lupus for about 4
years. I have been in remission almost a year and have gotten off
most of my meds except prednisolone, which is now up to 10mgs
because of mild flaring that just recently began. My question is
this, about a month ago I had started taking a sulpha antibiotic for
a bladder infection and broke out with hives a few hours after. I
have taken this med for long term control of a mycobacteria
infection in my blood so this caught me off guard. I decided to not
take it again and wait for the hives to disappear. I thought the
hives were an allergic reaction to the med, but now I don't think
so. I have been having outbreaks off and on all month and I can't
pin it down to any one thing. So I was wondering can Lupus cause
hives? |
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Yes! |
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(cont'd):
They itch intensely and never completely go away and they always pop
up in the same spots over and over again. My symptoms for flaring
are very mild compared to what I have experienced in the past. Have
you ever heard of hives associated with Lupus and what makes them go
away? |
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It varies. Steroids, anti-histamines, anti-malarials
and dapsone have all been used. You will need to talk to your
Lupus specialist and/or a dermatologist (skin specialist). Your GP
may prescribe other anti-histamines if this has not already been
tried but they don't always work. Sulphonamide allergy is fairly
common in Lupus and it would be best to avoid such drugs in future
as the antibiotic may have triggered this flare. |
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If I have no symptoms of Lupus
(and never have) but a positive ANA count and low platelets, is it
ok to take the contraceptive pill? |
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I would NOT recommend
an oestrogen containing (combined) pill unless anti-phospholipid
antibodies, as measured by the anti-cardiolipin antibody AND
"lupus anticoagulant" tests, have been done and are both negative.
I would have the tests repeated 3-6 months after starting the
combined pill if it is taken. Low platelets can be the first sign
of anti-phospholipid syndrome (sticky blood) which causes blood
clots (thrombosis). As the oestrogen containing (combined) pill
can also increase the risk of blood clots (thrombosis), this form
of contraception can be very dangerous in people with anti-phospholipid
antibodies, as measured by the anti-cardiolipin antibody OR lupus
anticoagulant tests.
The progesterone only
pill ("Mini-pill") can be taken, as can Depo-Provera progesterone
injections, by people with anti-phospholipid antibodies who need
contraception. All forms of contraception can have side-effects
and these should be discussed with your doctor. |
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I have been diagnosed with SLE 3
years ago, but my symptoms go back 20
years to when I was 32. My main symptoms are, joint pain, chronic
tiredness and
a terrible rash when in the sun - the typical butterfly on my face.
The latter of these
symptoms I find really hard to bear as I am a sun worshipper. Is
there any
medication that can actually stop this rash appearing? I do use a
total sunblock,
but I really like to take advantage of the sun especially living in
the British
climate. |
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Unfortunately there are no pills or
medicines that will stop the sun affecting you although the rate
at which Lupus patients are affected can vary from day-to-day,
week-to-week. It is important that you use a good sunblock every
day (a little goes a long way, the 'white face-look' is totally
unnecessary) and it is wise to wear a hat and long
sleeves/trousers when in the sun. There is no reason why Lupus
patients shouldn't enjoy any good weather we may have in the UK or
go abroad to hotter climates provided 'precautions' are taken. It
really isn't advisable to sit out all day in the sun for anyone
regardless of whether they have Lupus or not.
Enjoy good days but don't forget your sunblock and cover up
exposed areas
when the sun is bright. |
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For the past 7 months I have been
on 50mg of Imuran. My symptoms have been relieved considerably,
however I have not gone into complete remission. My dose has now
been cut down to 25mg, plus I am also taking 400mg Plaquenil, 5mg
Prednisolone. Because I have cut down my dose of Imuran I am likely
to flare and if so would this be only for a few days until the body
adjusts? |
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Changes in Lupus activity after a change in
dose of Imuran (azathioprine) may not be noticed for a few weeks
as it is a slow acting tablet. When the dose is reduced, the
benefit of the previously higher dose will last a few weeks.
However, when the disease might reactivate after a lowering of
therapy could be delayed some time (weeks, months or years) as it
may depend on when something next comes along to trigger the
disease eg exposure to UV light, infection etc. |
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| I
am taking the contraceptive pill but my doctor does not know this.
Should I tell him?
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Yes.
It is important that anyone treating a Lupus patient, whether they
be the GP, consultant, dentist etc. or an alternative therapist
i.e. homeopathy etc. should be informed of any medication being
taken, including over-the-counter items.
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it ok for Lupus sufferers to use the hormone coil if they have
been advised not to use the pill?
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The
Mirena coil suits most Lupus patients, especially those who have
already had one pregnancy. It is very small, releases small
amounts of Progesterone which is safe in Lupus and is rarely
associated with infection – but it is always best to check with
your own specialist.
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| Can
Complimentary Medicine such as Cranial Osteopathy, Homeopathy
& Acupuncture etc. help with some of the symptoms of Lupus? |
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Acupuncture
can help with pain relief. Homoeopathy does no harm but, in this
medical expert’s opinion, is unlikely to work. Cranial
Osteopathy and Chiropractice may help with headaches and
non-specific back pain or muscle spasm but do not really treat the
Lupus. They may, however, reduce the need for pain killing tablets
and improve sleep.
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| Loss
of hair is one of the symptoms of Lupus and side-effects of some
drugs. How do you manage the problem?
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Loss
of hair is usually due to Lupus rather than drug side-effects.
Prednisolone tablets or steroid scalp lotions help the quickest.
Hydroxychloroquine, Azathioprine and Methotrexate work more slowly
to help prevent loss of hair. Oral Cyclophosphamide is the drug
most likely to cause loss of hair, but this is rare with
intravenous infusions. |
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| What
are the safest drugs used for treatment of Lupus during lactation? |
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Everyone
agrees on these 2: Prednisolone and Ibuprofen (some doctors use
Azathioprine and Hydroxychloroquine, especially at low dose, with
no problems for the baby).
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| Is pregnancy contra-indicated or high risk? |
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There is an increased risk of miscarriage or stillbirth, but pregnancy can be successful and does not always cause a deterioration in lupus in the mother. the best outcomes are achieved if the mother's disease is well controlled. Careful management with close liaison between the GP, hospital physician and obstetrician are required, and it is essential that the mother does not suddenly stop all drug treatment on discovering that she is pregnant. It is preferable for women to plan pregnancy while on appropriate treatment. The oral contraceptive pill should not be prescribed without discussion with the hospital specialist, as oestrogens may exacerbate lupus. |
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| Are there any other simple screening tests which should be done? |
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YES - urinalysis for protein and blood is mandatory in any case of "possible SLE". If positive, and
infection excluded, urgent referral to a specialist is advised.
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Are
there any abnormalities on routine blood tests which are often
associated with
Lupus
and support the diagnosis?
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YES - low lymphocyte counts are very common but low neutrophil counts, total white count or
platelets may be found, and the ESR is usually (but not always) elevated.
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| What
are the commonest manifestations of Lupus? |
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Fatigue,
skin rashes (often photosensitive), mouth ulcers, arthralgia (with
little joint swelling), myalgia and pleuretic chest pains.
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| What
do I need to do? |
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Information
Soon
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