treatment and understanding

[ana24r]

hello, I've diagnosed with beginning of lupus, my antinuclear antibodies are positive, I have reynaud's, joint pains, muscle pains and night sweats but no temperature, I've been struggling with these sympotms about more than a year, I also have had several times tifo, and stomach infections, I thought that it was just the symptoms of tifo, but then everytime I got tests ran, my antinuclear antibodies appeared way positive.

so after being in a journey with several doctors, and specilists, I got diagnosed lupus, but they tell me is not developed yet at its fullest thats why all the other specific results of lupus appear negative, but my symtoms are real. so the doctor prescribed me hidroxicloraquina, vitamin d, and zinc, I've been taking these for 3 weeks now, but I want to know how much do you improove with these and is it possible to stop the lupus from developing? what other care tips do I have to take in consideration besides avoiding the sun???

I've been also kind of down because some of my family members don't believe in the diagnose of lupus, they always tell me you look fine, and you just want attention, all you have to do is to eat a lot, because you are very thin and look bad. and Iam way healthy I weight 99.2 lbs and I'am 1.58cm, besides I don't have a vitamin deficency and don't have anemia, my apetite has deecresed a little but I still manage to do 3 meals and 2 snacks daily.

I'am so tired of loved ones telling me That I'am a liar and that I'am not sick, I wish that was true.

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

I am sorry to read about your diagnosis. The most important thing is for you to be seeing a lupus specialist, so if you are at St Thomas' Hospital, London which has a specialist lupus clinic, you are in the best place.

If your symptoms are just developing, your doctor will keep a watchful eye on you. You can help by keeping a "diary" of any new symptoms "should" or "if" they develop. There is no way you can predict what "may" (or may not) happen. Hydroxychloroquine (Plaquenil) is a standard drug used to treat SLE, but it may take at least 6 weeks before it keeps in.

There is every good reason to be hopeful. Over the last 40 years or so, there has been tremendous advances in diagnosis and treatment. Once your condition is stabilised, you will feel better than you do. There is every good reason to be hopeful because the vast majority lead a normal life, have children, work and somecome off all medication when they are in in "remission."

As for the "You-look-well-therefore-you-are-well-and-not-ill" I am afraid that you are not alone and many report the disbelief and unhelpful, even unkind comments from family and friends. This is where LUpus Patients Understanding & Support (LUPUS) can help because we specialise in the psychological aspects of having lupus. We are also one of the few to have our own in-house psychotherapist or counsellor.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[milkwoman]

Welcome!

Getting diagnosed is just the start of the journey you are on. Hydroxychloroquine should help but it takes awhile. After three months you might see symptoms easing; after 6 months, you might feel better. It can take a full year to see full benefits.

You will learn what "triggers" a flare for you. Staying out of the sun is advisable as it can cause flares. Also, hydroxychloroquine makes you more sun-sensitive. I can get very fatigued if I am in the sun for too long.

You will need to get regular eye exams because hydroxychloroquine can affect your vision.

When I was diagnosed two years ago, I had to educate my family and friends on what lupus was and how it affects me. I had to take charge of my own life and not take on too much. Learn to say "no" to things that will ultimately make you unwell. We've all been there where you do too much and then spend the next few days - or weeks - feeling very unwell.

Listen to your body. It will guide you as to when you need to slow down and rest. I'm always told "I don't look sick". My usual response is, "well, looks are deceiving. I have to thank my good friends Cover Girl and Maybelline for making me presentable!"

Every day tasks take longer - especially in the morning. I sleep more than I ever did. But I do have good days where I can get a lot accomplished. Other days I simply need to rest and give myself permission to do so.

Surround yourself with a good support system - only those people who understand that your health is paramount. They will help you get thru the bad days.

Take care and hugs!

[lupus-support1 Administrator in reply to milkwoman]

A lovely message. You are also welcome to join us at the LuPUS Message Board. The information is above.

Be well!

With good wishes,

Ros

[SecretlyDisabled7]

Let them think what they think or provide them with the written materials. I am sure that in my world no one cares unless they share pain and other symptoms. They do not have pain-so no one has pain. They do not understand the great fatigue, they tell me yes they know what it is like, but don't really know. Being sick places a person in a world apart from others. It is hard but what can a person do except keep silent to those of us who understand.

It is why we are here.