View Full Version : new to lupus

05-19-2011, 08:45 AM
After a year of testing my 3 year old was just dx with disoid lupus. She has been on plaquinel for about 3 weeks. I have read the side effects and it scares me to death (eye sight, trouble when trying to have babies later in life, sezures) She has resently been itching her head so hard that her hair is being rubbed off. I try to keep positive but i dont get any stright answers from her dorctors. i dont understand how she just all of the sudden has this desease. I can't put her in the sun because i was told she will have a breakout but her sores where the wrost at winter (no sun)? I guess we can only hope and pray it wont evolve into se lupus. If anyone has any words of wisdom or information that would help this new commer that would be great.

05-19-2011, 10:08 AM
Hello lovemybug,

Welcome to our lovely large family at WHL and nice to have you with us and you'll find the threads give so much info.

I really feel sorry for your daughter as Lupus itself can be a challenge. With Plaquenil it suites a large majority of people and i was on it for 12wks and had to pull off it, it did wonders for my skin suffering from raynauds but because i suffer with my breathing and lungs, it did make that worse and i also starting having panic attacks more but i understand how you feel as some meds can cause some side affects, as i should know after years of ailments all connected to Lupus.
I've got Raynauds like i mentioned and SLE and winter is a nightmare to me and i've been banned from just the shade in the summer because after 10mins blister's form and i go so sore but if she does go out make sure she's covered up well and also wears 50 block against the sun.

I'll add below info for you on discoid Lupus and also the plaquenil.

((Hugs to you both)) Terri xxx

05-19-2011, 10:14 AM

Discoid lupus: A chronic inflammatory condition limited to the skin, caused by an autoimmune disease. An autoimmune disease occurs when the body's tissues are attacked by its own immune system. Patients with lupus have unusual antibodies in their blood that are targeted against their own body tissues.

Lupus can cause disease of the skin, heart, lungs, kidneys, joints, and nervous system. When only the skin is involved, as mentioned, the condition is called discoid lupus. When internal organs are involved, the condition is called systemic lupus erythematosus (SLE). Up to 10% of persons with discoid lupus eventually develop the systemic form of lupus (SLE).

SLE is eight times more common in women than men. The causes of SLE are unknown. However, heredity, viruses, ultraviolet light, and drugs may all play a role.

Eleven criteria have been established for the diagnosis of SLE:

•Malar (over the cheeks of the face) "butterfly" rash
•Discoid skin rash: patchy redness that can cause scarring
•Photosensitivity: skin rash in reaction to sunlight exposure
•Mucus membrane ulcers: ulceration of the lining of the mouth, nose or throat
•Arthritis: 2 or more swollen, tender joints of the extremities
•Pleuritis/pericarditis: inflammation of the lining tissue around the heart or lungs, usually associated with chest pain with breathing
•Kidney abnormalities: abnormal amounts of urine protein or cellular elements
•Brain irritation: manifested by seizures (convulsions) and/or psychosis
•Blood count abnormalities: low counts of white or red blood cells, or platelets
•Immunologic disorder: abnormal immune tests include anti-DNA or anti-Sm (Smith) antibodies, falsely positive blood test for syphilis, anticardiolipin antibodies, lupus anticoagulant, or positive LE prep test
•Antinuclear antibody: positive ANA antibody testing
The treatment of SLE is directed toward decreasing inflammation and/or the level of autoimmune activity. Persons with SLE can help prevent "flares" of disease by avoiding sun exposure and by not abruptly discontinuing medications.

Treatments for discoid lupus include avoiding sun exposure, antimalarial medications (hydroxychloroquine/PLAQUINIL and others), local cortisone injections, dapsone, and immune suppression medications.

05-19-2011, 10:18 AM

How does it work?
Plaquenil tablets contain the active ingredient hydroxychloroquine, which belongs to a group of medicines that are used to treat rheumatoid arthritis, called disease-modifying anti-rheumatic drugs (DMARDs).

Unlike painkillers, DMARDs work in rheumatoid arthritis by suppressing the excessive activity of the immune system that causes the inflammation of the joints. This actually slows progression of the underlying disease. It is not fully understood how hydrochloroquinine works, but it reduces the inflammation in the joints and the associated swelling and pain . However, it doesn't reverse any structural damage to the joints that has already occurred.

DMARDs are used when painkillers called non-steroidal anti-inflammatory drugs (NSAIDs, eg ibuprofen, diclofenac, naproxen) do not provide sufficient relief from the pain of the arthritis. However, unlike NSAIDs, they can take up to six months to produce their full effect, so they don't provide immediate relief from the pain.

Hydroxychloroquine can also be used to treat other conditions, such as systemic lupus erythematosus (SLE), discoid lupus erythematosus (DLE) and skin disorders caused or made worse by sunlight.

What is it used for?
Rheumatoid arthritis.
Long-term inflammation of skin and internal organs (SLE or DLE).
Juvenile arthritis (severe inflammatory disease of the joint that commonly occurs in children and adolescents).
Skin disorders caused or made worse by sunlight.
You should have an eye test before starting treatment with this medicine and at least every 12 months while you are taking this medicine. If you notice any changes in your vision during treatment, for such as blurred vision, decreased vision or changes in your colour vision, you should stop taking this medicine and tell your doctor immediately so that your eyes can be checked. This medicine should be discontinued if any visual problems develop.
This medication may cause a blurring of vision. If affected do not drive or operate machinery.
This medicine may rarely cause a decrease in the normal amounts of blood cells in the blood. For this reason you should have regular blood tests to check your blood cells. Consult your doctor immediately if you experience any of the following symptoms: unexplained bruising or bleeding, purple spots, sore throat, mouth ulcers, high temperature (fever), feeling tired or general illness. Your doctor may want to take a blood test to check your blood cells.
Use with caution in
People with gastro-intestinal problems, such as peptic ulcers, ulcerative colitis.
People with neurological diseases, such as Alzheimer's disease, Parkinson's disease.
People with blood disorders, such as anaemia, leucopenia, neutropenia or thrombocytopenia.
People taking medicines that may cause skin reactions or impair vision.
Decreased liver function.
Decreased kidey function.
People with a deficiency in glucose-6-phosphate dehydrogenase (G6PD deficiency).
Hereditary blood disorders called porphyrias.
Not to be used in
Pre-existing abnormality of the eye (eye maculopathy).
Psoriatic arthritis that can occur in people with the skin condition psoriasis.
Rare hereditary problems of galactose intolerance, the Lapp lactase deficiency or glucose-galactose malabsorption (Plaquenil tablets contain lactose).
This medicine should not be used if you are allergic to any of its ingredients. Please inform your doctor or pharmacist if you have previously experienced such an allergy.

If you feel you have experienced an allergic reaction, stop using this medicine and inform your doctor or pharmacist immediately.

Pregnancy and breastfeeding
Certain medicines should not be used during pregnancy or breastfeeding. However, other medicines may be safely used in pregnancy or breastfeeding providing the benefits to the mother outweigh the risks to the unborn baby. Always inform your doctor if you are pregnant or planning a pregnancy, before using any medicine.

There is limited information available about the safety of this medicine for use during pregnancy. The manufacturer states that it is should not be used during pregnancy. Seek medical advice from your doctor.
This medicine passes into breast milk in small amounts. It should not be used during breastfeeding. Mothers who need to take this medicine should not breastfeed. Seek further medical advice from your doctor.
Label warnings
Do not take indigestion remedies at the same time of day as this medication.
Take this medication with or after food.
Side effects
Medicines and their possible side effects can affect individual people in different ways. The following are some of the side effects that are known to be associated with this medicine. Just because a side effect is stated here, it does not mean that all people using this medicine will experience that or any side effect.

Disturbances of the gut such as diarrhoea, nausea, vomiting or abdominal pain.
Skin rashes.
Itching (pruritus).
Visual disturbances, such as blurred vision or abnormal colour vision.
Disorders of the front layer of the eye (cornea).
Damage to the retina of the eye.
Change in skin and hair colour.
Hair loss (alopecia).
Fits (convulsions).
Hearing disturbances, eg ringing in the ears (tinnitus) or hearing loss.
Anxiety, confusion, hallucinations or strange or abnormal thoughts.
Weakening of muscles.
Changes in the electrical signals in the heart.
Weakening of the heart muscle.
Liver disorders.
Disturbance in the normal numbers of blood cells in the blood.
The side effects listed above may not include all of the side effects reported by the medicine's manufacturer.

For more information about any other possible risks associated with this medicine, please read the information provided with the medicine or consult your doctor or pharmacist.

How can this medicine affect other medicines?
It is important to tell your doctor or pharmacist what medicines you are already taking, including those bought without a prescription and herbal medicines, before you start treatment with this medicine. Similarly, check with your doctor or pharmacist before taking any new medicines while taking this one, to make sure that the combination is safe.

Antacids (used to treat indigestion and heartburn) and kaolin reduce the absorption of hydroxychloroquine from the gut, which may mean the full dose is not absorbed into the body. To avoid this, antacids and kaolin should not be taken in the four hours before or after taking this medicine.

Hydroxychloroquine may increase the blood levels of digoxin, resulting in an increased risk of side-effects or toxicity. Therefore close monitoring is required.

Cimetidine may prevent the breakdown of hydroxychloroquine by the liver and lead to increased levels of hydroxychloroquine in the blood. You should avoid taking cimetidine with this medicine as it may increase the risk of side effects. If you do take cimetidine in combination with hydroxychloroquine, let your doctor or pharmacist know if you experience any new or increased side effects.

Hydroxychloroquine may reduce the effectiveness of the rabies vaccine. If you need to have rabies vaccine you should have it before you start taking this medicine.

Hydroxychloroquine may reduce the effectiveness of neostigmine or pyridostigmine for treating myaesthenia gravis.

05-19-2011, 02:47 PM
Hi and welcome to WHL! The good news is that she just has discoid lupus and not SLE. I know it doesn't seem like that is good news but it really is. Discoid lupus affects the skin where SLE would affect the organs. I know Terrie posted all about SLE but really you only need to pay attention to the discoid part. My mom used to say that we shouldn't "borrow trouble" which fits perfectly here. Yes, it is possible for someone with Discoid Lupus to end up having SLE but it is rare and you have enough to deal with right now.

The plaquenil should help heal up the rashes and even the spots in the hair. If it doesn't the doctor will most likely give you some kind of cream. I know it is a scary time but it is going to be OK. We are all here for you and either have, or can find, any answer you need. Make yourself at home and look through the old threads or start new ones if you wish. I really look forward to getting to know you!

05-19-2011, 03:13 PM
After a year of testing my 3 year old was just dx with disoid lupus. She has been on plaquinel for about 3 weeks. I have read the side effects and it scares me to death (eye sight, trouble when trying to have babies later in life, sezures) She has resently been itching her head so hard that her hair is being rubbed off. I try to keep positive but i dont get any stright answers from her dorctors. i dont understand how she just all of the sudden has this desease. I can't put her in the sun because i was told she will have a breakout but her sores where the wrost at winter (no sun)? I guess we can only hope and pray it wont evolve into se lupus. If anyone has any words of wisdom or information that would help this new commer that would be great.Like Mari said the info i've given is on discoid Lupus but extra info is involved refering to SLE but if your daughter as only Discoid Lupus read only on that and refering the plaquenil i saw the change in my skin after 5wks it's brillaint with the skin i will say that for it, it's just a shame i myself could'nt cope with the rest.

I wish you daughter and yourself all the very best and if you need to chat you know where we are. xxx

05-20-2011, 05:29 AM

i am sorry your daughter has to suffer.
like mari said, discoid lupus does not involve the organs.
being skin based, is the lesser of the evils.
being treated so young, the chance of it developing into sle is limited.
it takes time, usually 3 or so months for plaquenil to take full effect.
also we take mild doses of plaquinel, so the chances of side effects is greately reduced.

i hope we can help calm the fear, that you are facing.
please keep us posted on how your daughter is coping.

also can you please let me know her first name?

05-20-2011, 09:24 AM
Welcome! My daughter, now 19, started having health problems when she was very young and my heart goes out to you. You are fortunate that the doctors were able to diagnose her at such an early age. Hopefully they will be able to get things under control so she can be just a normal kid (with close monitoring).

05-22-2011, 06:22 AM
Hello lovemybug,

Just stopping by to see how your daughter is? and how she is feeling with the plaquenil but are you coping ok yourself.

Thinking of you both Terri xxx