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Have elevated anticardiolipin antibodies. Took steroids for bursitis and fibromyalgia. Suspected for lupus. Worrisome

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I am a 44yr old female. I have been very sick for over a year. Elevated XXXXXXX and anticardiolipids, EBV since 2011.(blood work done the last year every 3 months-no change) Started with pain in my shoulder that was DXd as Bursitus and fibromalygia and treated with steriods and injections. Then a month later the hip pain began. It has progressively gotten worse. I am limping for over a year and had 2 MRIs showing really only bone marrow edema and tissue inflammation-orthopedics think its from an autoimmune condition. There is a large void in the tissue of the side of my right thigh (you can see and feel a large void )and always pain and limping when I walk. The only time in the past year that I had any relief from the hip pain was when I took Biaxin 500mg 2x a day. I stopped limping -only for a few hours but it seemed miraculous. I did have a servere herx reaction for days. My rheumatolgist/Specialist believes it is possibly Lupus or a lupus like syndrome. I think I was mistreated lymes disease from when I was in my 20s-but the tests come back negative. (Thought I should mention My fiance has tested pos for TB many years ago.not sure if it's relavent) I feel like this is some kind of infection/inflammation. The fatigue is dibilitating some days. I was a very athletic person before this past year and worked out almost daily with weight training and cardio. I am worried that my leg tissue is rotting away and i'm getting sicker as the weeks fly by. I don't know what to do or who to see next. Any help is greatly appreciated. Thank you in advance...Regards,XXXXXXX
Posted Sun, 31 Mar 2013 in Lupus
Answered by Dr. Hari Charan Perigela 1 hour later
As XXXXXXX and anticardiolipin antibodies are elevated,it goes more in favour of Sustemic lupus erythematosis(SLE).
As part of the inflammation,synovium which is the thin membrane of connective tissue that lines joint spaces like hips and knees grows and thickens.This causes pain and swelling not only in the joints ,but also in the tendons and fluid filled sacs called bursae.The muscle does not weaken,but become inflammed at some point.The large void in the tissue of your right thigh may be due to inflammed muscle in that region.
Becuase of the associated hip joint involvement,you are experiencing pain and limping when you walk.
Apart from the joint involvement,common symptoms in SLE are fatigue,skin rash etc.
The goal of treatment is to control symptoms.
yoga or walk 30 minutes daily.
You can apply heating pads to painful areas or take warm showers or baths to reduce stiffness.Some feel better with cold packs.
Please stay away from activity that increases pain,tenderness,swelling or makes your muscles burn.
I am very sorry for the situation you are in.
But,if you follow the above measures,you will be very much comfortable.
Please consult a physiotherapist for specific exercises.
Wish you good health and speedy recovery
If you have any queries,i will clarify further
Above answer was peer-reviewed by
Follow-up: Have elevated anticardiolipin antibodies. Took steroids for bursitis and fibromyalgia. Suspected for lupus. Worrisome 31 minutes later
Yes...of course. That is what I have been doing for this past year along with Many other therapies.
None of which have really helped...
Thank you but I was hoping for some additional insight with the BME and or my response to the antibiotics or maybe something else to look for or rule out.
Answered by Dr. Hari Charan Perigela 45 minutes later
We general surgeons deal with lot of infections daily.
Though your bone marrow was oedematous,it does not require Bone marrow examination(BME).It is done to diagnose blood disorders like leukemia,lymphoma,multiple myeloma etc,not auto immune disorders.If a simple peripheral smear raises suspicion of any of the above diseases,BME can be done.You can go for a peripheral blood smear examination.It is a simple test.
There is no role of antibiotics in SLE.They are used in presence of infection only.The response you got may be coincidental.If you develop fever,you can suspect infection and antibiotics can be added.
As your fiance was tested positive for TB,you can exclude TB arthritis of your hip by latest blood tests for TB like ELISA/PCR.If it is positive,you have to take complete course of TB.
If there is swelling on the side of your thigh,please get an Ultrasound of that area.It clearly shows the origin of the swelling as well as the contents.If there is pus inside,then it could be abscess and can be easily drained.You will get much relief with the antibiotics and anti inflammatory agents after the procedure.
If you come back with latest Ultrasound report,blood test for TB and peripheral blood smear examination report,i will clarify further.
Wish you good health and speedy recovery
Above answer was peer-reviewed by
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