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New Member

Date Joined Oct 2013
Total Posts : 12
   Posted 10/10/2013 10:24 PM (GMT -6)   
Hi all,
I was "recently" diagnosed with Lupus and I am totally lost.  I quote recently because in 1994 I was told I had a positive ANA but not to worry about it because it was fibro and to go see a psych.  Well fast forward to today and numerous unexplained health problems later, I was finally referred to a rheumatologist who says now I have lupus.  My ANA levels are 1:2560 and I have a low white blood count on the initial tests.  She put me on the anti-malarial plaviquil (sp?), prednisone and aleve.  I see her again in a couple of months but have no idea what is happening, what I should be doing, what will happen, things I should be looking for and so on.  I have ongoing joint pain and swelling, chest pain, fatigue and mental issues.  Meaning I have moments where I lose my ability to reason and try to figure out what is real and what is not.  It is very confusing and scary when this happens.  I have four kids 5 and under and I am freaking out that I will not see them grow up.  Any help and or advice would be greatly appreciated!!

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 10/11/2013 12:05 AM (GMT -6)   
Hello and welcome! I am sorry about your diagnosis. The plaquenil is often the first step in managing the progression of the disease. It can take several months to reach optimum levels in your body, so initially, it may not seem to make a big difference. But it does! The prednisone is used to try and "get a jump start" on your symptoms. The aleve helps with the pain. There are other medications that your doctor may eventually suggest (depending on the severity of your symptoms).
I have been diagnosed for 12 years, now. My advice would be to rest as often as you can. With 4 small children that will not be easy, but it is important. Perhaps family/friends could give you a hand?
Also, keep a list of questions you want to ask your doctor. It is easy to forget things once you are actually in the doctor's office!
And, I don't know if this is true for all lupus patients, but sunlight can send me into a flare. Even 5 minutes in the sun can wipe me out. So be aware and take precautions if you must be in the sun.
Try to keep your stress level low. Again, with 4 little ones that will not be easy, but it really does make a difference.
Hopefully the pred will kick in quickly and you will begin to feel better!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies, asthma, GERD
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim, Q-Var, Restasis, Albuterol
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Tylenal, Vicodin, Prednisone.

Forum Moderator

Date Joined Jun 2006
Total Posts : 1650
   Posted 10/11/2013 8:42 AM (GMT -6)   
Welcome to our forum LupieLain! First let me say that at the top of our lupus forum is a resources link that many of us help write and I think you'll find it very useful. Secondly, your inability to reason is known commonly as "lupus fog" and you will find some days are much worse than others. Try not to be frightened- it's just one of the many unfortunate symptoms of lupus.
Take all your meds. If you're on psych meds (I've been on them for years) stay on them.
Be your own advocate by learning as much as you can about lupus, keeping a list of symptoms and problems to address with your rheumatologist, and if your treatment isn't going well seek another rheumatologist for a second opinion.
Lastly, get as much rest as you possibly can each day. A few years ago someone told this story: One of her young children was asked at school to draw a picture of what their mother liked to do best. He drew a pic of her lying on a bed. Teacher asked why and he said mommy likes to rest. Now the mommy found this very depressing, but to me it meant that she was taking care of herself, as she should.
This initial period you're going thru is really rough until the meds get lupus under control. Some lupies go into remission, and the majority always take meds and lead productive, fulfilling, long lives. It's really a very small percentage who die young. So, take a deep relaxing breath. I know how terrible you feel right now both physically and mentally, but in time you will feel much better.
I really hope that you will find the time to tell us how you're doing. Stop by to ask questions, reply to others, or simply to rant and vent. There's always someone here to listen. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart failure, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Sjogren's Moderator

New Member

Date Joined Oct 2013
Total Posts : 12
   Posted 10/11/2013 11:25 AM (GMT -6)   
Thanks for the replies and advice!  I cannot tell you what a relief it is to know that I am not losing my ever-loving mind for no reason  shocked  .  I have been searching for an explanation for 3 years now for the lupus fog.  Are you on meds for that?  Do they help?  Up until a few days ago I was a no meds person.  Only took my synthroid and occasional OTC pain control.  Now I feel like I could open a pharmacy.  Not to be morbid, but I am 39, I started my family later in life, is this still considered young where lupus is concerned?  I have two special needs kids who will need me for a lifetime.  Not that my other two also don't need me, but I think you understand what I am saying.  This is all so overwhelming.  I was dx'd with depressive/anxiety disorder in the early 90's and have just been dealing with it without meds.  Not sure if I should add them to the regime now that I have this DX.  How do I know if my rheumatologist is a good one?  What should I expect?  Having dealt with docs for my kids I have found some can be resistant to talk to and others very open.  My doc seems to fall in the middle and very busy, but I have only seen her once.  Do any of you go outside at all?  I love the outdoors.  It is my joy.  I have not had the opportunity the last few years to do what I love because we live in an apartment and with small kids we just were not hiking and fishing at all.  And now this.  How can I have fun outside and keep from being sick?  I am starting to ramble now.  Thanks again for the advice!  I look forward to following the forum and looking through the resources.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 10/11/2013 12:09 PM (GMT -6)   
Another great source of lupus info is and

You can buy sun protective clothing at,, or academy sports.
They will give you some extra time in the sun along with sunscreen. How much depends on your body. Also try to avoid the sun during its zenith (11am-4pm).

I'm one who has to avoid all sources of UV rays (fluoresent, cf bulbs, tanning beds, etc). I even have to have light blocking blinds. Not everyone needs this kind of extreme protection though.

Ask your doctor to check your vitamin D levels too. It can cause pain too.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 10/11/2013 4:37 PM (GMT -6)   
Welcome!   This site is a wonderful resource.  Conversing with others who are going through similar journeys really helps.  It makes me feel not so isolate since I live in a pretty isolated place.  I do go outside, but I try to minimize my outdoor time between those critical hours of 11-4 PM.  If I do go out during those hours, I make sure I am covered head to toe with a good sun hat on my head.  I won't lie to you and tell you that I am always 100% compliant.  I am not.  Sometimes I get away with it and at other times I do pay the consequence for sun exposure.  I still take walks, go to the river and camp.  I wear specially made sun shirts that really help and I am always slathered in sunscreen.  Everyone is different.  Some people have little to no problem with the sun and others can get really sick, or like in my case, be thrown into a fairly miserable flare.
I always go into an appointment with a list of questions for my doctor.  about three years after I was diagnosed, I did seek out a second opinion, which turned out to be the best step I could have taken.  It made my Rheumatologist mad at first, but darned it, it's my body and I have a right to the best care possible.  He did get over it, but it took some time.  I also always make sure that all of my docs are informed of what is happening with me.  That includes what medications I am on and what procedures I am undertaking.  That way it feels like we are all part of a team.
Take things slow and be good to yourself.  Stress can be out nemesis.

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 10/11/2013 10:17 PM (GMT -6)   
Hi LupieLain:

I wanted to welcome you to the forum too. You've been given a ton of great information. There are so many great people here, and we all understand what you're going through. You're not losing your mind and things will level out as your medications begin to work.

You'll have your hands full having four kids and two children with Special Needs, but hopefully you'll be able to get some help with them. It's VERY important that you try to limit your stress, you need plenty of rest, and you MUST LISTEN to your body. It will tell you when you're not doing well. Not listening to it can only make things worse. I hate to ask for help, and it's VERY hard for me to do, but learning our limits early on is a big deal. Knowing when to ask for help and to say NO are very important.

I'm 48 yrs old and I've had lupus for 26 years now. It took the doctors and many of them at that 13 years before they diagnosed me and began my treatment. I know you're very worried about whether you'll be around for your kids, try not to worry to much our medications can control our disease very well. Lupus patients vary from one another. Some after they get their disease under control need no medications after that, and others don't do quite as well and seem to struggle all the time.

I go out into sun very rarely as it really bothers me and I feel as if my skin is burning just sitting in the car and having the sun hit my skin thru the window. I was lucky when my daughter was little I was pretty healthy. She was quite a handful and never slept. She's almost 21 and still has insomnia really bad. We used to call her High speed, low drag. She was NEVER still and I thought most days I would lose my mind because I had only 2 hours of sleep the night before.

So I can't express it enough to you that you need plenty of rest, especially with the two special needs kids. Trying to figure out if your Rheumy is good or not, can be difficult. I normally look at, are they treating my condition, are they listening to me when I'm talking about my symptoms. Do they hear me when I say this isn't working and I'd like to try something else. Stuff like is what I look at, trust me I've been through several Rheumys. So don't feel bad if you think you need someone else. If they aren't listening to you or not treating your symptoms then it's time to seek someone else.

Please come and ask any questions you may have. There is a ton of practical experience here on this forum and someone should have an answer for you, we aren't doctors so we can't advise you. We can, however, tell you what we've experienced and what we've tried. Give it some time for you medication to kick in and start working on your lupus. Try not to get to discouraged and like I said listen to your body. It you feel you need to take a nap then that's what you need to do. If you have any family that can help you out for awhile, until you start to feel better would really be helpful.

Sometimes, when I needed sleep and my daughter wouldn't sleep, I'd sit her in my bed, turn on her favorite TV show. I'd put her favorite toys in my bed and she'd play there while I napped. Heck I'd even put a bowl with munchies on the nightstand so she wouldn't get me up for them. I learned lots of way to manage when my daughter was young. You will too, as they get older it does get easier in some ways but harder in others.

My signature is listed below and some of the stuff that my lupus causes is listed there. I'll be more than happy to answer any questions you may have. Looking forward to getting you know you better and I hope you begin to feel better REALLY SOON. Again, welcome and sorry that you have this, but things will be okay.

DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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