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Old 05-04-2003, 07:28 PM   #1
Junior Member
Join Date: May 2003
Location: canada
Posts: 24
aksm4 HB User
Unhappy someone please help

hello, well just new to all of this and just want some advice on lupus and all the things it does to you well for now my symptoms itchy rash ,hair loss minor joint pain in my hands,and very swollen lymphs everywhere???/

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Old 05-21-2003, 10:39 PM   #2
Join Date: May 2003
Location: San Diego, Ca
Posts: 4
Nikki31 HB User

Hi - I have had lupus since 1996. It began with symptoms similar to the ones you are experiencing now, except my joint pain was severe. I was placed on a high dose of steroids, gained about 50 pounds and went into a depression that ruined my marriage. As the years have passed, I have tolerated various levels of flares that have involved skin rashes and joint swellings/pain. To be honest, I didn't really think I was ever going to get much sicker. WRONG! A few months ago I was under a great deal of long term stress and was not taking proper care of myself. I ended up in the hospital for 6 days with bilateral pleural and pericardial effusion (inflamation of the lining around the lungs and heart). I was in so much pain that I had to sleep sitting up and was having difficulty breathing. I couldn't believe how sick I was! Now it has been almost 3 months since I was in the hospital and I am just barely recovering. I am on a weekly dose of chemotherapy (Methotrexate), steroids, pain killers and am also currently battling a severe depression.

I am not telling you all of this to scare you. You were asking for advice about lupus....Take this illness very seriously! It is not difficult to control if you take proper care of yourself and seek treatment when your symptoms are mild. Don't let things get out of control! Once my organs were involved I had a major reality check... Also, don't be afraid to ask for help and support. Don't be stubborn like I was and downplay the severity of this disease. There are a lot of effective medications out there, just find the right combo that works for you and your lifestyle.

Oh, and another lesson I have learned over time - find a good doctor that you trust and takes the time to listen to you and support your needs. It's worth the hassle of changing docs to find a good one. I stayed with the same rheumatologist for years that I dreaded going to see. I am much happier now that I have replaced her with another doc.

I hope this helps you in some way. Good luck and be patient with us here on this website, a lot of us don't have much energy to spare. Feel free to write me back. It may take me a few days but I'll answer.

Old 05-23-2003, 10:47 AM   #3
Join Date: May 2003
Posts: 2
OMI999 HB User
Red face

HEY THERE! You sound just like i did in the beginning. The swollen lymphnodes had my dr thinking cancer. had to have a biopsy and everything. ofcourse that pushed me into a flare so bad i had to be hospitalized and eventually diagnosed with sle. Are you on any medications? The prednisone and the plaquenil helped with the swelling and achy joints. Hope to talk to ya soon!

Old 05-28-2003, 10:15 AM   #4
Senior Member
Join Date: Apr 2003
Posts: 107

Nikki31 and dalej,
I'm having similar symptoms of hurting under my right rib cage, 4 months now...I too feel better sometimes sleeping propped up..Please tell me your reasons for sleeping in the propped up postion..Thank you

Old 05-29-2003, 01:12 PM   #5
Join Date: May 2003
Location: San Diego, Ca
Posts: 4
Nikki31 HB User

Hi all!

HRATL - The sleeping proped up was due to pain from the pleural effusion. Effusion is usually distinct because it is difficult to lie down without aggravating the pain. I also had a hard time inhaling, especially suddenly like in a sneeze or yawn. The pain was fixed and stabbing in nature.

If you are experiencing rib-side pain it is most likely costochondritis (Tietze's syndrome)which is inflamation of the cartilage around the ribs or ribs/sternum. I remember when I first experienced this I thought I was having a heart attack. It felt like an elephant was sitting on my chest. It turned out that the 20lb backback that I was lugging around in college was aggraviting the inflamation.

Of course you need to take this issue up with your doctor (medical disclaimer for the day...)I would imagine that you should at least have a chest x-ray done which would show any effusions. Sleeping proped up for 4 months it is not acceptable! Those of us with chronic illnesses need restorative sleep for our bodies to heal and regenerate. As I mentioned earlier, get things checked out before they turn severe. A short course of steroids is a lot better that a long stay in the hospital.

Thanks everybody who replied. But what happened to ASKM4? Oh well. I will check out those websites. Thanks also for the info on the chemotherapy. I hadn't heard about that type of treatment. The Methotrexate is working well but my hair is really starting to fall out. I have been taking it for 10 weeks now.

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