Questions  Answers 

 

Your Question and the response from a

Medical Advisor may be on this page

 

   

 


The advice given on this page is provided by the WMLG Medical Advisor as general guidance. All persons diagnosed with

Lupus or suspecting the illness should always consult their own physician to ensure proper evaluation and treatment.

 

  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?

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?

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 ?

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.

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?

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?

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.

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?

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?

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?

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?

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?

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.

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?

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?
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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Is it ok for Lupus sufferers to use the hormone coil if they have been advised not to use the pill?

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?
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?

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?
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?

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?

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?

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?

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?

Information Soon