Help --- Support for Mother with Lupus
My mother was diagnosed with Lupus over 2 years ago, initially Discoid Lupus with significant break outs on her arms and back, this has gotten worse over the last two years - I suspect that this has turned for the worse over the past 6 months as she complaims of extreme fatigue, the chills, is having trouble eating (swalling food), has thrush (which she cannot get rid of) and so many other symptoms / aches and pains. She is generally miserable and there does not seem to be any end in sight.
Wondering if anyone out there has experienced this and what can be done to alleviate these symptoms. I should tell you my mother hates the doctor (she simply refuses to take significant amounts of medicine) and is very drug sensative, so this has been a long road to walk. It painful everyday to watch her suffer and we don't know how to help her.
Please help me understand if there is anything I can do.
Hi Diana (:
I'm sorry that I can't help you much with this. I am currently not even diagnosed with Lupus, and i've only been dealing with being sick for 8 months or so now. So I don't have much experience and I can't tell you what helps and what won't.
Does your mother hate the doctor she has now, or just doctors in general? If she hates "the" doctor, and not "all" doctors, then she needs to try to find a better doctor who understands her and her needs better.
Nobody wants to take drugs, and people with Lupus are very sensitive, so I can more than understand her hatred of it.
I just wanted to stop by and say welcome..though i'm not experienced, many on this forum are, and pretty much everyone here is so very supportive and wonderful especially when you need someone to lend you their ear for a while, or cyber hugs.
From what little I know - the most important thing is to be there for her and support her emotionally. So many people with autoimmune diseases don't show symptoms, and their families thus tend to think that they're fakers or not really that sick. Having someone who stands by you and believes that you are sick and advocates for you to feel and get better is a godsend.
This is a horrible disease to have, and i'm sorry that your mother has it...but i'm glad that you've found us here at WHL, and I hope someone else can help you out more with what to do and how to help your mother. Feel free to check out the group forum "Friends and Family Of SLE"- it's designed specifically for people facing your predicament, to help you feel less alone.
Welcome to WHL and it's Lovely to have you with us and you'll learn so much from the threads concerning issues connected with Lupus.
I have Discoid Lupus the same as your mom, concerning her Flares she's getting concerning her skin is she under a Dermatologist for her skin?..if not she needs to see one or her GP as i was on steriod based creams which where excellent but my skin as gone past that now and your mom needs to watch heat and if she does sit out the least irritation she needs to get back inside.
I also have the chills the same...anyone living here would think i'd gone mad with the swapping of clothes to suite body temprature.
It will be nice getting to know you and your concerns for your mom and i'll add info on discoid Lupus below.
((Hugs Terry)) xxx
Discoid Lupus Erythematosus
Discoid lupus erythematosus (DLE) is a disease of the skin causing atrophy, scarring and photosensitivity. It has sometimes been called chronic lupus erythematosis. It has features in common with systemic lupus erythematosus (SLE) but the latter is, as its name implies, a systemic disease that affects many internal organs. SLE has sometimes been called disseminated lupus erythematosus but this term is less apt and as it may also be abbreviated to DLE, it is best avoided.
Lupus is the Latin word for wolf, and it implies that the lesion resembles a wolf's bite. The term was originally used for lupus vulgaris that is cutaneous tuberculosis..
The prevalence is between 17 and 48 per 100,000 people. Women are affected about twice as often as men, compared with 10 times the frequency for SLE. The usual age of onset is between 20 and 40 years, which is about 20 years younger than SLE..
•The lesions are usually asymptomatic but they may present with mild pruritus or sometimes pain within the lesions.
•There may be accompanying SLE but this occurs in less than 5%.
•Arthralgia or arthritis can occur.
The lesions have a characteristic appearance..
•Lesions tend to occur on skin that is most exposed to light but relatively unexposed skin may also be involved. The scalp is often affected and this may cause permanent alopecia.
•The primary lesion is an erythematous papule or plaque with slight or moderate scaling.
•With time, the scale may thicken and become adherent.
•Changes in pigmentation develop. The active border area shows hyperpigmentation whilst the inactive centre is hypopigmented.
•Lesions spread centrifugally and may merge.
•As lesions age, the follicular openings dilate and a keratin plug forms. This is called follicular plugging or patulous follicles.
•As active lesions resolve, atrophy and scarring results.
.Subsets and variants
Patients with DLE often are divided into 2 subsets:.
•Localised DLE is when the head and neck only are involved.
•Widespread DLE occurs when other areas are affected, even if the head and neck are also affected.
Those with widespread disease often have abnormalities of blood or serology, and are more likely to develop SLE. They are more difficult to treat.
Several unusual variants have been reported..
•Mucosal surfaces may be affected by lesions that appear identical to DLE of the skin or by lesions that may simulate lichen planus.
•Palms and soles may be affected in fewer than 2% of cases.
•DLE lesions may become hypertrophic or verrucous. There are wart-like lesions, most often on the extensor aspects of the arms. These hypertrophic lesions may resemble of LE warts, keratoacanthomas, or squamous cell carcinoma. They are difficult to treat.
•Lupus panniculitis is a chronic form that may be accompanied by typical DLE lesions or may occur in patients with SLE.
Note the plaques, the depigmentation and the potential for scarring in a much more unpleasant lesion..
•Systemic lupus erythematosus
•Squamous Cell Carcinoma
There may be no laboratory tests giving abnormalities. Biopsy for histology may be required. Characteristic histopathological changes are observed in DLE but these differ depending upon the type and age of the lesion. About 90% of cases show a direct positive immunofluorescence in biopsies of lesions but this is not very specific..
•Serologic testing should be done. Approximately 20% of patients with DLE have a positive antinuclear antibody (ANA). A much smaller number are positive for other autoantibodies (1 to 3%).
•There may be a low white cell count and raised ESR.
•Rheumatoid factor may be positive.
•Complement levels may be low.
•Urinalysis may indicate renal involvement with albuminuria.
Blood tests should be repeated periodically, perhaps annually when the condition appears stable, to ascertain that systemic disease is not starting..
There are several skin diseases that occur more often in DLE..
•Malignant change may occur. Dark skin may loose its inherent protection with depigmentation. Malignant degeneration tends to produce basal cell carcinoma or squamous cell carcinoma rather than malignant melanoma.
•Porphyria cutanea tarda appears to be more common in patients with DLE but this may be precipitated by the use of antimalarials in the treatment of the disease.
•Lichen planus may be part of an overlap disease or may occur as a result of antimalarial therapy.
•Psoriasis is a common disease, but it may be more common in these patients.
The aims of management are to improve the patient's appearance, to control existing lesions and limit scarring, and to prevent the development of further lesions. Interpreting the literature can be difficult as papers often refer to the treatment of cutaneous manifestations of lupus erythematosus and it is unclear if the treated disease is SLE or DLE..
•Sun exposure must be minimised by avoiding going out in bright sun as much as possible, protective clothing and high factor sunscreens.
•The lesions are unsightly and usually in visible places, so cosmetic camouflage is required.
•There is no specific diet.
•Smoking should cease as it tends to be associated with more severe disease1 and it makes treatment with antimalarials less effective.2
www.patient.co.uk › PatientPlus (Type in the search section Discoid Lupus)
this is the best thing you can do for her.
Originally Posted by Elo
be there when she needs it.
please educate yourself.
many of us hated drugs..
there is a few threads atesting to this.
your mom needs to look at themas a friend not the enemy
(this is one of the harder things for some people to do)
Originally Posted by softball16
Hi and welcome to WHL. I had a horrible time with thrush until I had been on plaquenil for about 4 months. I was initially diagnosed with Discoid Lupus and then SCLE Lupus (kind of in between Discoid and SLE) and finally with SLE. As steve said, most of us were very against meds at first but that is really the only way to keep this disease in check. Lupus used to be a fatal disease but due to drugs like plaquenil it doesn't have to be that way.
I know how hard it is to find good doctors that really understand Lupus. I have had to "fire" many of them on the search for one that would listen. Just do what you are doing. Gather as much information as you can and be an advocate for her with the doctors. We are very glad that you found us and I look forward to getting to know you