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Living with Lupus

Posted by on Apr. 3, 2007 at 10:39 PM
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I found out that I had Lupus 3 years ago... it was a long road to finding out, but knowing finally helped me get on the path of feeling better. I have been off and on Prednisone since then, and it seems to work. Hopefully, however, I'll be able to get off of it entirely. The biggest problem for me is the joint pain. Sometimes I can't even take the milk out of the refridgerator. My son weighs 21lbs. and is hard to carry around some days! I'm also taking Plaquenil (sp) for pain and Zoloft for headaches and mild depression. How about you? Do you take meds? If so, which ones?

by on Apr. 3, 2007 at 10:39 PM
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by New Member on Apr. 7, 2007 at 8:35 PM
I have Lupus and I was diagnosed about 2 years now.  I'm still trying to adjust.  Thank God it is not as bad as it could be.  I am always tired.  It is not a normal tired I get extremely tired.  I lost most of my hair and my scalp is full of ulcers.  I used to have lumps all over my body but thanks be to God they went away.  I am anemic and my white cells could be higher but other than that compared to other people I read about I am blessed.  What about you? what are your symptoms.  I really wish I could do something about my scalp.
by New Member on Apr. 7, 2007 at 8:44 PM
I am supposed to take plaquenil and predisone.  I stopped taking them because their side effects are horrible.  But when I need to take them I start them up again.  I also take irron and multi vitamins.  I am doing good with taking these two so far.  I get joint pains to but not so severe.  This is crazy to deal with because I'm not use to being sick or not feeling well.  I forget to go to the doctor sometimes and she gets so mad at me but like i said i am trying to adjust to this whole thing.
by Member on Apr. 10, 2007 at 5:35 AM

I know what you mean about little things being difficult.  Most of the time my husband asks me to pour his milk for him.  He is on so many meds... was taking the prednisone but they're trying to wean him off that.  Also takes mutiple ones for pain management, which help but not enough.  He takes Flouoxetine for depression but that doesn't seem to be helping much.  They just upped his dosage on that.  Hopefully soon he will start to feel better emotionally. 

by Group Owner on Apr. 10, 2007 at 10:27 AM
Well i am the die hard I take no meds for the pain, just over the counter, your body gets used to the pain after a while...mine did

the doctor said I have had Lupus probably since I was 12, then the pain was unbearable...4 me it is messing with my internal system, mainly my lungs, sometimes my chest hurts so bad it feels like a heart I do use the Advair 500mg...and my optical nerves, so therefore sometimes I can't hardly see at all, not even with glasses,

I also take muscle relaxers, they just put me to sleep, which is good, cause i don't sleep well unless I take something...

I am a catering chef and working is becoming harder, because of the pain in my hands... so I had to stop that work and fin an easier job, just recently, i applied for SSI

I also have HEP C from one of the TATTOO shops I went 2,

but things could always be worse, there are a whole lot of people out here who are not doing half as good as me...

peace and luv 2 all

by Group Owner on Apr. 10, 2007 at 10:37 AM



by Group Owner on Apr. 13, 2007 at 9:21 PM

I suppose for you  husband things are bad, because like you  men  are raised to be the head of the household...

and him not being  able to do little things like pour the milk must be hard for him not to be able to do ...

and  I hope for both of your sakes that depression meds work out for him
because that is a hard thing to deal with for both of you...

i will keep you in my prayers, and talk 2 u soon


by Member on Apr. 14, 2007 at 6:46 PM
In reply to "saved" comment:
Please see your rhuematologist.. self medicating can be deadly with prednisone.. Our bodys make the hormone that prednisone is.. in our adrenal glands.. you have to wean yourself slowly off this med otherwise your body wont know to start making it again and you can put yourself into shock.  Plaquenil is not a pain killer.. its an immune suppressant.. it usually only works after about 3-5 months of taking it.. I am on about 15 managing meds now. I have to be on three immune suppressants one is injection once a week I take methotrexate, plaquenil, and Arava, I take muscle relaxers to sleep.. I take antidepressants for depression and pain relieving factors.. I take lortabs which are for pain.. and I have to be on a Fentanyl patch which is a pain patch you wear for three days and change it. Im on xanax for the anxiety I have from the high doses of steroids Im on, but  its the only way I can get our of bed everyday.  I have many other drugs but I have to tell you.. Please be careful.. the drs are there to help you.  I cant move without mine.. I have been on no less than 10-15 mg of prednisone a day with spikes as high as 60mg since June of 06.. I hate the side affects but I have no quality of life without them. The joint pain is to severe to move without steroids.. I have gained 50lbs I have acne really bad that is now on my shoulders and I have lost collagen in my skin causing stretch marks on my legs and sides.. I have had three children and never once had a stretch mark..I hate that I have to be on these drugs but value being able to pick up my 17 month old son more than the way I look and without it I can do literally nothing.  I didnt mean to make this a pitty party but I just wanted you to know if you dont have to take the steroids GREAT!   I hope you can stay off them.. I wish I could!  But just be very careful not to self treat.. the drs know what they are doing and if youre not sure get a second opinion.. but the plaquenil wont work if its not used continuously.  I hope this doesnt come off rude.. Im not meaning to at all.. I just seem to have a really bad case of lupus and am constantly in my dr office.  I wish I could live like some of the others and be on many less meds! Please write me if you have any questions. 

I am on a number of meds tho HuntieLove3.. if you have questions about them I have done lots of research on them and can answer some of your questions.
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