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HOPEFULSOUL
09-17-2012, 11:59 AM
hello everyone,

how best to describe myself, scared, sad, lonely, depressed, confused, tired... and the list could go on and on. to cut a long story short i awoke 1 morning back in 2010 with my eye balls actually swollen out of my head, i went to the opthamologist and they gave me eye drops.. it seemed to work, but it only worked for 3 months.. the swelling came back with force, ever since then my eyes have been swollen, red, cant go in sunlight, i had to avoid all ultra violet lights, it was so bad i had to wear dark glasses just to watch the television. (can u imagine the light from the television would hurt my eyes and make them water like crazy.
ever since i have been battling for over 2 years to find out whats wrong with me, I have given up many times and decided to just try again, 1 last doctor, after COUNTLESS visits to doctors and Opthamologists finally April of this year a very wise doctor decided i should do an ANA test.. and it came back positive, so for sure i have lupus. sadly i have lupus in my eyes... i have dry eyes, scleritis, and just last month i have developed blepharitis in both eyes... my eyelids are crusting over and my appearance is becoming terrible...around my eyes are consistently swollen even worse in the morning when i wake up.. i go to bed in fear of wondering what I'm going to look like in the morning. my kidney level is at 365 and the doctor says if it should reach 500 im bound to have kidney failure. Also since last month i have developed edema in both legs... and especially the left leg is getting bigger than the right leg..

I am confused and don't know what to do.. I'm hearing alot of lupus diets but don't understand what foods to eat and what not to eat. i feel lost because i wake up everyday in fear that I'm going to die sooner than expected because of this horrible disease. no-one in my family has even heard of this disease, I'm the first 1 to have it. i hear and read up that it cuts your life expectancy less than half.. when i first heard that i have it i felt like committing suicide (i have to be honest)..

please I'm seeking all advise possible, it just seems I'm alone in the world right now... can anyone tell me if my eyes stay swollen for a long time if I could get blind..

I live in Kingston, Jamaica. I have 2 children ages 7 and 3... I am 28 years old.... i don't want to die and leave my children at a young age.
PLEASE HELP... DOES ANYONE ELSE HAVE THESE SYMPTOMS.....

Derrie
09-17-2012, 12:35 PM
Hello, HopefulSoul -- I am glad you have joined us! As you know from your own experience, having lupus can be very difficult at times, and it can impact us not only physically, but emotionally and psychologically. Everyone here has a wide range of experience dealing with lupus symptoms, treatment, doctors, etc., and I am sure you will find many people who can comment on your own experience.

There are a few things your post made me think about:

First, I have blepharitis, too, and I know what a pain it can be! Have you tried hot compresses for it yet? One thing that helps me a lot is to soak a clean washcloth in as hot of water as I can stand, then lie down and press the washcloth over my eyes (with my eyes closed). I sometimes do this up to four times a day. Often, the reduces the pain and helps clear out the cloggy glands that cause blepharitis. You can also wash your eyelids, especially around the eyelashes (where the glands that get clogged from blepharitis are) with a mild baby shampoo and warm water. Close your eyes and use a Q-tip or a washcloth over your finger that has a little diluted baby shampoo on it to gently massage your eyelids. Rinse them well before you open your eyes again.

Regarding diet, while no diet can fix your lupus, when you have a chronic illness like lupus, it is important to eat healthy to take care of your body and keep it strong for fighting the lupus. Foods that are not processed are good for you-- things like whole grains, vegetables, lean proteins (like chicken with no skin), beans, fresh fruit are good for nourishing your body. Some people eat what is called an "anti-inflammatory diet," but I don't have much experience with that, though someone else here might be able to comment on that.

Also, have your doctors given you any medications to manage your lupus and your symptoms? You are clearly suffering, and drugs like Plaquenil, prednisone, methotrexate, and other "disease modifying" drugs can help keep your lupus in check or even help you achieve remission. Sadly, there is no cure for lupus yet, but there are a number of drugs that can help us control our disease.

Finally, you said, "i don't want to die and leave my children at a young age" -- of course you don't! And that is such a strong, good reason not to commit suicide. Your children need their mother, and you are young. You are clearly suffering right now, but lupus can be controlled. There are many things that you and your doctors can do to get yourself feeling better. While lupus used to be more of a death sentence, it rarely is today. The information you read about cutting life expectancy in half is almost certainly out of date. These days, many people with lupus live a normal lifespan! So many advanced have been made in medicine.

Also, it may help you, if there is one available in your community, to see a counselor or therapist who specializes in depression and chronic illness. Dealing with such hardship, especially when you are young, and a mother, and when your family doesn't understand, is too great a burden for almost anyone to bear. A counselor or therapist could help you address your depression and get you back on track to happiness. It's not always easy, but it can be done. And you do have so much to live for!

Hugs to you, HopefulSoul, and welcome to WHL. We are here for you.

SleepyInSeattle
09-17-2012, 12:42 PM
Oh honey - (((((HUGS!))))) !!!!!!!!

You are really suffering, and I am so sorry. You have come to the right place, though - folks here are very comforting and kind and knowledgeable.

First - please relax a bit. NO, Lupus does mean your life expectancy is cut in half. In fact, a positive ANA does not even necessarily mean you HAVE Lupus - there's no definitive blood tests for it. Your doctor should have given you a lot more support and information on this....can you find another doctor who is more helpful? Or at least call back to your current one and let them know you're really upset and need some more information and support? Sometimes one of the nurses can take more time with you and give you better information than the doc, who is often very busy. Is there a good friend or family member who can come with you to an appointment to support you and help you remember to ask all the questions you have? That sort of thing can be soooooo helpful.

Also, there are many medications that are used to treat Lupus and also to treat the various symptoms that come with it. Did your doctor give you anything to take for it? Some of the medications take a while to start working, but they can be very effective. It can take a while, working with your doc, to find the right balance for you, because this disease is different in every person who has it, but with some time and effort many of us see a big relief in symptoms once we get treatment and get some medication going.

There is no diet or anything else that is a "cure" or even an legitimate treatment for Lupus. If you are concerned about it, you should ask your doctor if some foods might activate your immune system and cause flares - sometimes doctors recommend that you try avoiding certain foods to see if that is the case - but it's something you should do WITH your doctor's consent and advice. And it's not a replacement for proper medication and care.

If you are just now being diagnosed, remember that this is the BEGINNING of treatment, not the end! Once they know what the problem is, they can start working to help you with it. I wish I could say there is a cure and you'll feel better in a week, but I can't - sometimes it takes a while to get things right, but please don't lose hope - MOST OF US DO FEEL A LOT BETTER with medical treatment.

One of the things that goes along with all the pain and fatigue and the diagnosis itself is DEPRESSION. In fact, the Lupus itself can affect your brain chemistry to make you feel pretty awful. PLEASE call your doc or a crisis center or clergy member and let them know how deeply you've been affected by all this, and that you've considered harming yourself. YOU ARE NOT ALONE - many of us have "been there". This is not your fault and it's part of the process of healing to get treatment for your emotions as well as your body. Your family needs you - take care of yourself! You are worth it!

Feel free to come here and ask questions and get support - we are here! :-)

HOPEFULSOUL
09-17-2012, 01:24 PM
thank you Derrie, and thank you sleepyinseattle.

I have tried keeping my eyes clean by cleansing them twice per day using wet wipes and wiping off the scabby stuff that's accumulated... (gross) it seems like u haven't washed your face since u woke up...
what test can I do to check my kidney levels... i dont know if that is up or down now.

I was placed on plaquenil and prednisone. I took 3 prednisone and 2 plaquenil per day for 1 week then 2 prednisone and 1 plaquenil for 1 week now its tapered off to 1 prednisone and 1 plaquenil per day.. i must admit my eyes look better than before, but they are still swollen some mornings compared to some, i wonder why and im on medication... do you think 1 of each tablet per day is too low? Is blepharitis an autoimmune disease too? Is that caused from lupus? Is edema a part of lupus as well? what would cause half of my entire body to become or rather becoming swollen....?? :(

Another thing im gaining massive amount of weight..... I gained 10 pounds in 1 month. I heard the pills make you gain weight like crazy and Im seeing that for sure...I was 130 pounds, now I am well over 155 pounds. this saddens me, what on earth am i gonna look like by the end of this year :( Does lupus swell your belly/tummy/stomach? mine seems to be getting bigger by the day.. the other day a friend was looking at me funny like i was pregnant.... (sniff sniff) :( some days i have some serious pains in my stomach and then the other day no pain.

Is it safe to exercise like regular people? like vigorous exercise and sweating for couple hours well? i love to keep an eye on my weight...
i have so many questions :(

SleepyInSeattle
09-17-2012, 01:55 PM
Definitely write all your questions down and discuss them with your doctor...we can tell you OUR experiences, but everyone is different, and it's really important that you do what your doctor says.

I will try to answer your questions from my own experience here - but this does not replace a doctor's advice!!!!
When you say "3 prednisone", I am not sure how much that is - the dosage per pill varies, so I can't say anything about the amounts - but it is normal to taper the dosage down slowly. It is not a medication that you can quit all at once - it can be quite dangerous to do so.

Plaquenil usually comes in 200mg tablets, and most adults take 400mg per day (2 tablets). Are you sure you were supposed to go down to one per day? Please ask your doctor. Plaquenil is a very common medication for autoimmune diseases - many of us are on it all the time. It is not like most other medications that you take for a while and then stop - to work, it has to be taken EVERY DAY - for many of us, for the rest of our lives.

Some people have stomach upset with Plaquenil at first, but usually after a few weeks that fades. It helps to take it after a meal, when your stomach is full. Some people find that they have a lot of bloating and gas if they take it with milk or cheese, though. Personally, it hasn't bothered me much one way or the other. If it bothers you, ask your doc - you might be able to take just one pill per day for a while, and then work up to two per day. Do keep in mind that side effects tend to fade away.

Plaquenil takes a long time to build up in your body and become effective - most people do not get much benefit from it for several months - sometimes up to 6 months. But then all of a sudden you'll realize you have more energy, less achiness, are sleeping better at night, etc. Be patient with it.

Also, you need to get your eyes checked every 6 months. There is a very rare side effect from plaquenil that can affect your retinas, but an eye doctor can identify the problem before it's a big problem - and going off the plaquenil usually takes care of it. Then, of course, you have to try another drug to control the lupus - but again, it is a VERY RARE thing. Those eye exams every 6 months are worth it, though, just to be sure.

Yes, it is normal to gain weight in strange places when taking Prednisone. The weight often comes off (slowly) once you are off the prednisone, assuming your eating habits are healthy. Prednisone makes a lot of people VERY VERY HUNGRY all the time!!!!

As for the blepharitis and edema, I'd say it's worth a call to your doctor. ANY change in symptoms is probably worth calling and asking about.

A lot of us keep a little journal of symptoms and questions so we remember to ask about things when we see our doctors - you might want to do that. Eventually you will learn what is "normal" for YOU, and what is not. You will also become more familiar with your medications and their side effects.

Try taking the plaquenil on a full tummy (but not with dairy) and see if that helps with the stomach pains. And be sure to call the doc to ask about the dosage - I'd guess that you are supposed to stay on 400mg (2 tablets) per day, but I don't know.

I hope some of that helps....

tgal
09-17-2012, 03:14 PM
First let me welcome you to WHL! We are so glad you are here. Next there is one important thing you need to know. As others have told you eating healthy is important but there is one food people with Lupis must avoid. Alfalfa sprouts can trigger a Lupua flare and is the only food that the Lupis Foundation is adamant that we avoid. Other than that it is about healthy and what your body can handle.

There are tons of "Lupus Diets" on the net along with "Natual Cures" but they are nothing more than BS. Don't get tricked into tthem because many of them are actual dangerous to us. If you think you need a special diet then talk to your Dr. The most important thing to remember is that, with medical help, Lupus is not a death sentence and you can live a long happy life with this disease

Derrie
09-17-2012, 04:02 PM
First let me welcome you to WHL! We are so glad you are here. Next there is one important thing you need to know. As others have told you eating healthy is important but there is one food people with Lupis must avoid. Alfalfa sprouts can trigger a Lupua flare and is the only food that the Lupis Foundation is adamant that we avoid. Other than that it is about healthy and what your body can handle.


Whoa. I did not know that about sprouts. Because guess what I eat numerous times per week, including the big sandwich I just had for lunch today. Why was I never told this?!

My doctor told me to avoid teas and supplements with echinacea in them because echinacea is an immune-booster, and it can make autoimmune issues worse and it can interfere with lupus drugs like Plaquenil working properly. And lo and behold, I looked at my box of echinacea tea, and it said "Do Not Use if You Have An Autoimmune Disease Like Lupus." So there's that.

...

Also, HopefulSoul, you asked about blepharitis. Blepharitis is not, in itself, an autoimmune disease. Blepharitis refers generally to an inflammation of the eyelids. It can be connected to autoimmune diseases, and mine almost surely is, because my blepharitis has gotten much better since I started taking Plaquenil. It took a couple of months on Plaquenil, but now I rarely have problems with my blepharitis. You can read more about blepharitis here: http://www.mayoclinic.com/health/blepharitis/DS00633

Also, blepharitis is sometimes liked to Sjogren's syndrome, an autoimmune disease that often affects the tear-producing glands in the eyes. If your blepharitis continues to bother you, or you start to notice that your eyes are dry, you might ask your doctors about Sjogren's. Generally, though, systemic treatment (ie, the pills you take) would be similar to how you're treated for lupus, so it's not terribly important to figure out exactly where the blepharitis is coming from. What's important is to make sure it's not bothering you or damaging your eyes. If it gets worse or your eyes get dry, you should go back to the ophthalmologist because he or she will likely have some treatment options for the symptoms.

kim,l
09-18-2012, 05:03 AM
hello and welcome to whl i am so sorry you are so scared and depressed but we all have gone through these feelings and we are here for you.

tgal
09-18-2012, 06:24 AM
Looks like they have added Garlic to our list (boy am I in trouble) due to the fact that it help boost the immune system as well. Here is a good article from Johns Hopkins about just this topic

http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/

HOPEFULSOUL
09-18-2012, 10:14 AM
thank you all... (sleepyinseattle, Tgal, derrie and Kim1 for responding.... i will do and take into consideration all you have said.

1. can exercise decrease the edema in both my legs?
2. Is it true that i cant have any more kids? is it risky to get pregnant? will my kidney fail easier while pregnant?
3. Are researchers researching a cure for lupus?
4. can i do vigorous exercise like normal people?

tgal
09-18-2012, 03:03 PM
I am on my cell and can't give you detailed info on your last post but I want to clear up something that I think is most likely the biggest issue for you. Yes, you can still have kids! Many people here have had kids after their diagnosis. You will have to be carefully monitored but you can still be a mom! Try not to freak out over all the stuff you read on the net. Much of it is wrong!

jmail
09-20-2012, 01:22 PM
...

1. can exercise decrease the edema in both my legs?
- if you have edema, consult your doc about any exercise. Usually, exercise helps edema, but not always. Elevate your legs when you can. You have an excuse to take it easy..
2. Is it true that i cant have any more kids? is it risky to get pregnant? will my kidney fail easier while pregnant?
- see tgal & others' advice
3. Are researchers researching a cure for lupus?
- yes. just not fast enough for my patience... tic
4. can i do vigorous exercise like normal people?
If you have lupus, you shouldn't without doctor approval. Generally, the more exercise, the better, but lupies "exhaust" faster, and might "flare" from that

steve.b
09-21-2012, 03:30 AM
hi hopeful soul.
sorry i am late in welcomming you, i have been off line for a couple of days.

ladies with lupus can fall pregnant.
we have a few ladies who are members here, that are going through the final stages of there pregnancy at the moment.
we have a couple of members who have had two babies since being diagnosed.

yes there is extra risks.
yes there is a greater chance of loosing your baby.
but yes you can still have a baby.
please talk this over with your doctor.