Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

812 Members
7,358 Posts
0 Online
Muscles & Bones
/ Lupus Support Group

I have a problem

deleted_user
deleted_user
Hello fellow DS. I really have problem. I was so tired ot being sick of this. My joint hurts back started yesterday.This is what I felt when I was not yet diagnose of lupus. As in, this really reminds me when I could hardly get up in the bed bec. of my joints pain. When I have that prednisone it all gone but then I suffer horrible side effects. Ok, I hate both...the side effects of Preds and the joints pain. Last tuesday I stopped taking preds for docs. order and thats what I got joints pain on thursday. Is there anyone outthere that when they stop taking prednisone and then their joints pain will come back? I really dont know what to do. If I am going to tell my doc and then I will suffer the side effect of prednisone forever I guess....hohohoho I am so tired of being sick.
deleted_user
deleted_user
I have additional ques. Is plaquenil should suppose to help the joints pain? I am taking plaquenil too....
deleted_user
deleted_user
I felt like a new woman on pred. My husband felt like he had his wife back! Unfortunately, they don't want to keep you on it. I am in the same position you are in. I hurt so bad without it. Michelle
deleted_user
deleted_user
I have been on plaquenil for 8 weeks now(it takes bout that long to start working) and it has helped with the joint pain, and most of all the fatigue. I feel more like my old self being able to do things, like work. I haven't had the need to take as much ibuprophen as I was taking.
But, everyone is different.
deleted_user
deleted_user
I take Prednisone every day but a very low dosage, only 3mg a day. After they got everything under control, I was dropped to that dose for maintenance. I don't have any side effects at this point and it keeps things under control most of the time. I also take Plaquenil. I have been on both for almost 5 years and so far so good. I still get flares but nothing like when I first got sick. If I do miss taking the prednisone I can tell the difference.
deleted_user
deleted_user
Hello prednisone saved my life but almost destroyed my eye sight. I have been on and off cytoxen 5 times in the last 7 years. Doc just started me on celcept 2000 mg a day helps my joints but stomach issues UG. See if you have a Doc that deals with LUPS like i do here in AZ. It took them 1 1/2 years to DX me and it was too late for my kidneys. WE HAVE TO TAKE CHARGE OF OUR OWN MEDICAL CARE keep push the questions
deleted_user
deleted_user
Plaquinil gave me my life back! There are still flares, but they are not a severe as before and my joints are not as sore and swollen. Plus, I have had NO side effects. i would DEFININITELY recommend it!
Posts You May Be Interested In
  • carrie415

    Widow/Widowers Traveling/Cruise Trips??

    Posted by: carrie415
    Last Reply: Myfavorite
    11
    I miss traveling with my husband. Has anyone found a specific site regarding cruising for widow/widowers or any sightseeing trips. Not interested in being with couples and kids,,,I realize a cruise ship will have a portion size of families and couples, but perhaps they also put together a part of the cruise ship for groups of widows/widowers????
  • joannklingaman

    Grief

    Posted by: joannklingaman
    Last Reply: lovesloons
    11
    A friend sent this to me..As far as I can see, grief will never truly end.It may become softer overtime, more gentleand some days will feel sharp.But grief will last as long as Love does - ForeverIt's simply the way the absence of your loved onemanifests in your heart. A deep longing accompaniedby the deepest Love some days. The heavy fog mayreturn and the next day, it may recede.Once again, it's...