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Just diagnosed and a little afraid.

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Lupus
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Posted 4/3/2012 1:28 PM (GMT 0)
Good morning,

I am a 35yo female who was just diagnosed with SLE 3/30/12. Although my Rheumatologist says I have a mild case and says not to believe the scary things I have read on the internet...I am still very afraid.

I don't have any pain, or rashes but I do have a few broken capillaries beside my knees. I AM tired as heck and have had some pretty serious orthostasis...thank Goodness that has gotten better for now. I am positive ana and for other labs for Lupus, and tested positive for Sjorgren's antibodies as well.

I started Plaquenil on my d-day, but not the entire dose. I have since worked my way up to 200mgs per day, and will gradually increase to the 400 per day my doc prescribed. I seem to be tolerating it well so far.

My fear is that while my lupus is in mild form now, what do I have to look forward to 5 or 10 years down the road? I did finally manage a sucessful pregnancy, after trying to have a baby for 11 years. My son is 4 now, and I can't conceive of ever not being there for him. I guess, I had a lot of questions for my Doc, and after he reached his lupus conclusion, he rushed out of the exam room and left me to my lupus and my questions. ?

I have been reading some really scary things about kidney and heart involvement. I have just recently began seeing a cardio, because of the Raynaulds, and Orthostasis, along with palpitations. Does a mild form of lupus usually stay mild? or does this depend on the individual? Do you have any advise for a newly diagnosed person with lots of questions and a Rheumy with no time? How will I know of cardiac or renal involvement? Why do I feel the worst when I have my periods? And potassium loss? Is there a connection? So many questions. So little answers...

 

Posted 4/3/2012 2:13 PM (GMT 0)
Welcome to the questions galore corner....
Lupus affect everyone differently. That is why many people have so many questions. Have you looked at the Lupus.org website yet? It answered a lot of questions for me, but unfortunately started other questions.
You also need to check with your local hospital for a suport group to attend. If there is not one available you may want to visit with a psychologist who specializes in chronic disease support.
I have raynaulds in a rather mild form along with my moderate SLE. I try to keep away from sudden temperture changes (freezers, frozen food sections, I keep my house at 76 degrees). I don't carry around my cold drinks anymore. I leave it on the table and drink from a straw.
Kidney infections and UTIs are a pest for me. My doctor put me on probiotics and cranberry juice to help me.
I don't know why we seem worse during our periods. Hormones????
Discuss with your doctor what are safe things you can take with your medications. The plaquenil will take about 6 months to build up in your system to help with the fatigue and inflamations.
Posted 4/3/2012 4:25 PM (GMT 0)
Check out "The Lupus Book" by Dr Daniel Wallace. It is one of the main "go-to" books for talking about Lupus and what life will be like. .

Lupus is totally different for each individual. Sometimes it progresses rapidly to organ involvement, sometimes it is "mild" or "quiet" for a while (the word "remission" isn't really used), sometimes it is lots of little things conspiring to make life complicated.

My Lupus is much less intrusive than it was at diagnosis 10 years ago. I find that the same basic things that we're supposed to do already help control it - we seem to be more fragile with our reserve resources than other people. Those oh-so-basic things become *big* players --- good healthy food at regular intervals, deep healthy restorative sleep, stress avoidance, regular mild to moderate exercise (as tolerated). Then if I follow my Dr's orders, and plan to actually do only about 1/2 or 1/3'd of what I think I can do....I can have fairly normal days.

Of course, that is me....as they say "your mileage may vary". Listen carefully to your body, you will learn how to work with it to have the best experience you can have. Live each day fully and try not to worry about the future - it will come as it comes with or without you spending time & energy on it.

Hang in there, feel free to ask any specific questions you want.
Posted 4/3/2012 4:50 PM (GMT 0)
Sadikata

I know that it all seems a little overwhelming but after it all settles in, you will begin to learn to live with lupus as we all have. The best advice I have is to take it easy with your body and to eat, sleep, stay out of the sun, and exercise when you can...but don't over do it because you will be more tired and not feeling well. I know that this is hard with a 4 year old ( I have a 7 and 3 year old) but just remember...the more you take care of yourself, the more you can be there for you child.

As far as long term outlook...it is different for everyone. I have had lupus since 1/2003 (I am now 33 years old) and it mostly affects my lungs, joints, hair loss, and rashes. I have had pleurisy and fluid around the heart...the important thing is that you stay on top of symptoms and see a doctor when things are wrong. I always felt bad with my periods and got really sick when taking birth control pills that changed hormone levels every week. I found that the Mirena has helped tremendously and keeps me in "remission" for years at a time. I might have little rashes or hair loss but the big problems stay in check with the Mirena.

Read the information out there but realize that staying calm and being in tune with your body is what will keep you healthy in the long run. Stay on top of things and don't let doctors make you feel bad if they can't explain something. Just means that they need to think a little harder or send you to someone else who has the time.

Good luck and take care!

LupusMomma
Posted 4/3/2012 8:06 PM (GMT 0)
I just wanted to add it is very important to listen to your body. If it is telling you to rest, make it priority to rest. Never stop taking your medicine thinking its not doing any good. Chances are you will find out very quickly what good is was doing. You know your body better than anyone else. If something feels very wrong, call your doctor!!
Posted 4/5/2012 10:32 PM (GMT 0)
Lupus is different for everybody, so I encourage you to get to know your body and what kinds of things trigger your flares. As more time goes by you will understand what your body is trying to tell you. I also encourage you to let your support group (family and friends) what you're going through and don't be afraid to ask for help when you need it.

Good luck in finding your answers and I wish you the best.
Posted 4/6/2012 10:47 PM (GMT 0)
Thanks, its better knowing that I am not alone. :) And thanks for helping with my million questions, went back to Rheumy today to have a repeat Lupus anti coagulant panel, the initial one was 'mishandled'. Idk. Last night had what I'm assuming was a panic..anxiey attack, very very very scary. Again, I'm hormonal..could the two be related? My Cutie Cardiologist called this afternoon and said the ultrasound of my legs showed no clots, which isflipping awesome...and while I had him on the phone, I told him about the lil episode last night, he went ahead and set up an apointment for Monday. Maybe I'll know moreif its anxiety or what then.
Thanks again to all of you for taking the time to respond, your knowledge, support and kind wordshelp me feel a bit better about this whole thing.
Best,
S
Posted 4/7/2012 2:08 AM (GMT 0)
I get small anxiety attacks with my lupus, but I feel it's my hormone too. They come and go like the wind with me.
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