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Regular Member

Date Joined Aug 2008
Total Posts : 46
   Posted 9/1/2008 3:25 PM (GMT -6)   
hi there, im new here, been reading posts for a couple of days. Everyone here seems very nice and helpful. Well im 27, just found out in jan of 08 that i have sle lupus. Been having a real hard time with drs and my darn county insurance, referrals here and there that take forever. I am on imuran and plaquenil and prednisone. Just last week my primary finally gave me something for pain, ultram. I have a horrible pain in my left shoulder that has been there for months and they cant find a problem, so theyre sending me to an ortho specialist. I have high protien in my urine, so theyre sending me to another specialist, had lung and chest xrays cuz i cant breathe, they came out fine, went for an ekg and heart ultrasoung, waiting on those results.
I have a 4yr old son that i raise on my own, ive just been so sick and crying and depressed, i just need someone to talk to! i am so confused by all of this. I will post again when i find out more. Thanks for listening to me whine! shakehead

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 9/1/2008 4:22 PM (GMT -6)   
(((((((((( JoJo )))))))))

OH NO! You sound like you've got one doozy of a flare !!

I hope the imuran kicks in fast. The plaquenil really does take several months to build in your system, but it does become an important part of treatment. Did your doc have you get your eyes examined by an ophthalmologist?? Make sure you keep those appointments. The plaq can, rarely, cause trouble with the eyes and you want to catch it early.

Do you know about pacing? We need to be careful that we alternate rest with activity. We do a little, then rest. As we are able. Our rest and sleep is key in recovering from a flare.

I hope you find lots of good info here. Have you read the posts in "Lupus Resources". Some good info for new members there. Link is at the end of my signature.

Keep us updated, ok?


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 9/1/2008 7:55 PM (GMT -6)   

Hi Jo jo, welcome to the group. You are right there are a lot of great people here. I couldn't manage with out their love and support. I do understand the frustration of trying to get into doctors and all the time of waiting and waiting. I hope the ortho can help you with the pain. It seems like there is a lot of problem on here with people who can't breath. I have a pulm. appt. wenesday but I have been on o2 for 5 years. You might ask to see a pulm just to make sure. alot of pcp's don't know much about lungs.

well I just wanted to say welcome to the group and I look forward to getting to know you

hugs carol

Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?  Everytime you come here and share your pain,your hopes, and your support. I love and thank you all!

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 9/1/2008 10:02 PM (GMT -6)   
Imuran and plaquenil are both slow acting but prednisone is fast acting.  Everyone reacts differently to treatment so it is impossible to predict how you will do.
The condition you have causing protein in your urine is proteinuria and I would guess that you are being sent to a nephrologist.  Normal treatment for that is lisinopril or similar drug.  I have the condition and it was brought under control after a few months with no permanent damage to my kidneys.  Also took a diurectic to reduce any edema caused by the condition.  The doctor did do a kidney biopsy to determine the level of damage initially.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller

Regular Member

Date Joined Aug 2008
Total Posts : 46
   Posted 9/2/2008 2:06 AM (GMT -6)   

okie- yea thats another place they r sending me, sorry its hard to keep em all straight! i swear never hardly being sick in my life, and now to this, its been alot to keep track of. Some days  i dont even know who im seeing i just know i have appts and go to that adress!! lol that sbad!

bsime- yep thats where my pcp is sending me to, just waiting on all these referrals, i had to do the 24hr collection and it cvame out really high in protein, so we shall see. Like i said above its hard keeping track of all these drs!! hopefully it all goes well

also i had just gone for a regular eye exam b4 getting sick, so my dr said to go agian in year becuz of taking plaqenil just to check. Ehhh i hate prednisone finally im down to 20mg a day, was like 60, so my face isnt as swollen, and imuran, havent had any problems with. I finally got tramadol? ultram? for pain last week, does anyone have any opinions on that? It seems to help, i only take it when i really hurt and cant get up?

thank you everyone! i will keep you all posted. Have a good hopefully flare free day!



Regular Member

Date Joined Mar 2008
Total Posts : 110
   Posted 9/2/2008 5:23 AM (GMT -6)   

I know how hard it is to be a mom with a little one to take care of. My kids were all 5 and younger when I was diagnosed. Do you have family and friends that can help you out? I have a hard time, too, keeping up with doctor appts. and such. My solution was to get a dry erase board to put on the fridge. as soon as I get home from the doctor, I write down the name, appt. info, and what type of doctor. I write it on the calendar as well just to make sure I see them at least once a day. My memory is really bad. ;) I also keep a ziploc bag on the fridge with a magnet to put the appointment card in until it's time to go. I keep a list of my current meds written down on a 3x5 card in my wallet; makes it alot easier when the new doctor asks what meds you're taking.

I hope you start feeling better soon.
dix: lupus sle Jan. '99, hypo-thyroid Mar. '06
rx: pred. 5mg/day, plaquenil 200mg/day, levothyroxine .112mg/day, premarin .45mg/day, methotrexate 7.5mg/week, folic acid 1mg/day
Also a wife and mother of three.

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 9/2/2008 5:34 PM (GMT -6)   
(((( jojo ))))) I am sorry you are feeling so bad, I hope you get some answers from the doctors. Plaquenil and Imuran are good meds to treat lupus, that is what I am on in addition to Methotrexate and a few others. I hope the meds kick in soon and that they work well for you. Take care and keep us posted on how you are doing.

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 9/2/2008 6:04 PM (GMT -6)   
Hi Jojo,
I wanted to welcome you to the forum as well.  I was your age when I was diagnosed with lupus too.  It's a difficult age to be facing a major life change isn't it....
You got excellent advice from everyone.  I'll just reiterate how important it is to find balance in your life now.  Everything has to be considered before you do it.  The medications you're on are excellent and I hope they work really well for you.  I'm on prednisone and Imuran as well.  They're both excellent for me.  I'd love to be off the prednisone, but I don't think that will be happening! 
Take good care Jojo, talk with you soon!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 9/2/2008 6:22 PM (GMT -6)   
Hi JoJo,
Just wanted to add a welcome. This is a wonderful place to be - everyone is so helpful and supportive. I hope you get all the insurance issues straightened out quickly so that you can see the specialists. I know that everything seems overwhelming right now, but with the right combination of doctors and drugs, you will get this all under control!
Enjoy your little one! Mine are grown and I miss those days. Remember, kids have fun doing the simplest things, so pick activities that don't tire you out too much (play-doh, coloring and painting, etc). As long as you are both having a good time, you will be creating some long-time memories - for both of you!
Hope you feel better, soon.
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Prilosec, Nasacort, Prozac, Ambien CR.
Daily Supplements: Multi-vitamin, Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

New Member

Date Joined Sep 2008
Total Posts : 8
   Posted Yesterday 8:26 PM (GMT -6)   
Jojo it has to be hard to have a child so young and be going through what your going through. Im 21 and I know my personal struggle and I can't imagine adding a child into the equation. Im on prednisone and plaquenil myself. Plaquenil takes a couple of months to take effect but prednisone works quickly but ive learned there are alot of long-term side effects caused by prolonged usage. I've been taking this med for over a year and im working with my docs in order to get me off of it but you cant just all of a sudden stop taking prednisone it has to be tapered down and when I get down to very-low dosages of it I have falre-ups. I also have high protein levels in my urine and its from a condition called proteinuria. Basically its when your kidneys arent breaking down all the protein that ur taking in and it comes out through your urine. This condition is what first led my doctors to suspect that I had kidney involvement and I had two biopsies in order to confirm that. I've experienced trouble with my breathing and it was due to fluid being around my heart and lungs so you may want to have an ultrasound around your lungs. I know you mentioned that your family doctor gave you pain meds and thats perfectly okay but a family doctor can only take you so far when it comes to managing lupus. I would suggest that you definately look into getting a nephrolgist and a rheumatologist. Im by no means an expert on lupus I was diagnosed in March of 07. I do know that this takes a toll on u physically, mentally, and spiritually, but what Im learning and what I want you to realize is that you are not alone! No, none of our battles are exactly the same but ultimately we are all in the same fight fighting the exact same war. We all have our good days, bad days, even worse days. You are going to have days where think its impossible to be any more down than you already are and on those days tell yourself if you've truly hit rock-bottom then there is only one way to go and that way is up. I wouldnt lie to you so i'm going to go ahead and let you know that you are gonna have days where this wont work and you feel you cant or dont want 2 take anymore, in those moments think of your son. I know its hard but try 2 get plenty of rest and try not 2 stress 2 much that only aggravates lupus. I would love 2 be updated on your current situation so please keep in touch and remember you are not alone wink
This has occured within the past six months:
Medical history: SLE, SLE Nephtitis (Stage III/IV), HTN, pnuemonia, pleural effusion, pericardial effusion requiring drainage (2x)
Surgical History: Percardiocentesis with pigtail catheter placement, renal biopsy (2X)
Daily Meds: Nexium(40mg), Calcium Carbonate(500mg 3x), Adalat(60mg 3x), Demadex(50mg), Plaquenil(200mg 2x), Zoloft(50mg), Spironolactone(400mg), Atacand(32mg 2x), Prednisone(80mg), Lebatalol(1000mg 2x), Clonidine(0.2mg), Plaquenil(200mg 2x), Pravachol(20mg), Zofran

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