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Bikermom

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 #1 
Hello I am new to your group and live here in Phoenix, AZ.

I have not been on this site before.....Because I was blessed with "No Flares"...Well kids let me tell you my story....Had TKR on 12/29/2016. All went well no issues. Started PT also going well. That was until week 5. I noticed I had a cough and some swelling in hands,left arm & also left leg (surgery was on right). Woke up 2/5 All swollen, face legs,stomach you name it.Also SOB and felt like an elephant was on my chest. Arrived at hospital,got labs,Ultra sound (for possible clots, which was negative)chest x-ray,EKG,BlahBlah......So they tell me I have Pneumonia. Got shot of strong antobotics and a script to continous for 7 day. Really not helping...Back to hospital 2/10/2017 this time I stayed overnight. Released next day to follow up with my Dr. No predisone,water pill, just a new 
antibiotic. Cardio Dr. comes in and tells me maybe CHF!!!! Another ECHO which was fine so not CT. Just follow up with my Dr. Went to see my Dr on 2/15 was happy to see her I cried! She reviewed everything and did many more lab. Got on Prednisone & water pill. She was convinced it was LUPUS!!!! Called me the next day, all my ANA etc were off the charts...TOTAL Flare from HELL....Hate to say it but glad we knew what the heck was going on. Labs also said some protein in urine. Just completed 24 urine. She will call me tommorow and let me know if I will see Kidney Dr/or a plan. Then got me in with I think the best at Mayo, on 2/27/2017. I am feeling better swelling is going down,Aches are pretty much gone...But still resting at home waiting for directions. All I have to say is my TKR went so DANG GREAT and this FLARE just took me down. I guess I should have been more vocal about having Lupus before the surgery.....Anyone else had this after a major surgery? 
Hope to hear back from anyone.....Denise
Cakelady

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 #2 
Hi and welcome when we're you dx with lupus? Also keep in mind anytime you go through something major like surgery you more then likely will flair. Everyone is different so you just don't know. The prednisone is what's making you feel better just try not to stay on it to long

Once again good luck

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taffylinden

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 #3 
Hi, Bikermom! Glad you found us. Yes, ALWAYS tell the surgeon in advance that you have lupus. Sometimes they can keep the inflammation down. I've had a flare after every surgery. 

I'm a little confused about the timeline. So you went to Mayo on 2/25 and are still awaiting directions, or were you referred on 2/25 and haven't gone yet?
aap51990

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 #4 
Hello,
I am new here.  I was diagnosed in September 2016.  My rheumatologist started me off with plaquenil and cymbalta for the pain.  As of yesterday, my labs are showing that my inflammation levels are steadily going up.  Starting Monday I will be on methatrexate.  I'm constantly tired and my knees and hands hurt.  About 2 weeks ago I noticed that my scalp is very tender to the touch (never had issues with my scalp before).  Some nights I cant even lay on a pillow.  I have not noticed any of my hair falling out.  The rheum dr doesnt know whats causing this.  Does anyone have any ideas?  Any feedback is helpful.  I'm still trying to understand and deal with this.  thanks
 

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woody55

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 #5 
I was dx'd (finally) 9 years ago as a result of a painful, red, itchy patch on my scalp. "Discoid" lupus. A quarter sized area of hair fell out but luckily re-grew. My scalp STILL hurts and itches all over, probably because I don't always wear a hat outdoors. Sun avoidance is critical. I hope you don't have this, but maybe ask your doctor?
Robinj

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 #6 
DLE can be dx'd by biopsy.
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