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Low fever, tiredness, tender cervical lymph nodes, lung calcification. Positive TB skin test, abdominal surgery. Miliary TB?

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I am a 28 year old female who has had a positive XXXXXXX for over 15 years. On side note, I also have interstitial cystitis. The XXXXXXX titer has ranged from 1:640 on more than one occassion and down to 1:320. My XXXXXXX is homogenous and speckled pattern. Negative for every specific XXXXXXX test though. The sed rate has only ever been slightly higher than normal at any one time. WBC count on the low range of normal and RBC only slightly below normal consistently despite iron supplements. For the past 2 years, I have suffered TERRIBLE fatigue (where I HAVE to drop everything to fall into a XXXXXXX sleep), muscle aches, joint pains (mostly fingers, knees, and occassonal ankes), terrible, cotton, dry mouth --my docs have commented on it during assessment, permanently swollen parotid glands (for over 10 years noted by every MD I see), mysterious rashes even my derm can't figure out, splotches on my face even derm can't figure out either, spacy/lightheadedness with fatigue, flu-like feeling, and muscle burning ALL that occur at once and then fade away like a flare. My rheumatologst was highly suspicious of me having some sort of lupus or some other rheumatoid disease) and started me on Plaquenil. It helped after a few months (and I no longer catch viruses but the episodes as described above came on after spending time in the sun (summer months) or towards the end of the work week with exhaustion. After six months on the Plaquenil, he tried me on a steroid burst which helped immensely! But as soon as I tapered off, sx returned. I finally felt awesome once he kept me on 15mg for 7 days and tapered 5 mg a week. I felt normal for weeks after I was off the prednisone.
HOWEVER, my XXXXXXX has tested NEGATIVE 2x for the first time in over 15 years, so my rheumatolgoist says my sx cannot be connective tissue since I have a negative XXXXXXX twice since seeing him. He has ruled out lupus, sjrogrens, and most every autoimmune disease because of this and because of a normal sed rate. My sed rate is around 20 when I feel like junk.
Recently, I have developed a terrible chest pain that feels like I'm being stabbed when I lie down. It's been going on for over a month now. Two recent chest x-rays showed a nodule. A CT without contrast showed it was normal.

Should I pursue rheumatology for assistance in my sx and seek a second opinion? what is happening with my body? Please help. Do suddenly normal labs rule out connective tissue disease sx?
Posted Sat, 14 Apr 2012 in Lupus
Answered by Dr. Praveen Jadhav 17 hours later

Thanks for your query.

With positive XXXXXXX photo-sensitive rash, fatigue, joint pains, and excellent response to steroids, I would have imagined that in most likelihood you may be suffering from lupus. Dry mouth and enlarged parotids would suggest Sjogrens.

It is unfair to rely on the titres of XXXXXXX alone. Titres of dsDNA and complement 3 (C3) and complement 4 (c4) would be more reliable to assess the severity of lupus. Also, instead of sed rate, CRP titres will be better indicator to assess the activity of lupus. Sed rate will depend on your fibrinogen and protein levels and can be normal in spite of active lupus if these levels are low.

It is unclear what is the nodule on your X XXXXXXX Lupus can involve the pleura (covering of lungs) and its inflammation can cause severe stabbing chest pain. It may or may not show on your X XXXXXXX There could be other causes of nodule as well and the position and size of the nodule is important. A picture of the X XXXXXXX would have been helpful.

I presume your anti XXXXXXX and anti La antibodies are done. However, normal titres of these antibodies do not rule out Sjogrens. Has a Shirmers test been done to check your lacrimation? This simple test if positive can confrim Sjogrens. Otherwise, biopsy of minor salivary glands can be diagnostic.

Hence, in summary, a second rheumatolgy can be of great help to confirm your diagnosis of lupus.

Above answer was peer-reviewed by
Follow-up: Low fever, tiredness, tender cervical lymph nodes, lung calcification. Positive TB skin test, abdominal surgery. Miliary TB? 28 hours later
Thank you, Dr. Jadav for your quick response. My C3 and C4 were also normal and that is why my rheumatologist is ruling out Yes, the rash, fatigue, and joint pain all come and once. I currently have all gone. And the dry mouth and enlarged parotid gland are there permanently. Because my inflammatory markers are normal and my XXXXXXX has suddenly turned negative after 15 years, (I had >10 tests over 15 years and they were all positive up to a year ago), do you think a university or medical college rheumatologist would be receptive to treating me or do you think they woud write me off because of my labs?

Also, can one have fatigue with lupus when they are not flaring? I am a jogger and jog 8 miles and get on with my day. In the last year, when I am not flaring, I jog 6 miles and then am exhausted the rest of the day. Major change in my fatigue levels.

Thank you so much for your input!
Follow-up: Low fever, tiredness, tender cervical lymph nodes, lung calcification. Positive TB skin test, abdominal surgery. Miliary TB? 1 minute later
though i must say when I am truly in pain and sick....THAT is when I am too sick to get into an appointment right away, so my doc usually gets the inflammatory markers (C3 and C4 specifically) long after a flare and then says, "See? All normal. "
Answered by Dr. Praveen Jadhav 18 hours later

Thanks for writing back.

The significance of varying levels of XXXXXXX titres is still not fully understood and whether its reflects the activity of lupus is still controversial. This is aptly explained in a recent article, which you can access on line. The article is titled - Autoantibodies in systemic lupus erythematosus: Revisited. Indian journal of rheumatology 2011 September, volume 6, number 3, pages 136-142. The site address is WWW.WWWW.WW
No one should write you off because of normal labs, as we need to treat the patient and not the labs. Please check the method used to detect XXXXXXX Immunoflurence is a more accurate method than ELISA.

Low grade fatigue can be persistent even when there is no flare. Auto antibodies are just one aspect of the disease. There could be other known and unknown factors which are responsible for the various symptoms of disease. I presume that you have checked your renal functions, liver function, hemoglobin and platelets and they are normal. These are some other known factors which can cause fatigue.

Hope I answered all your questions. Please accept my answer in case you do not have further queries. Wish you Good Health
Above answer was peer-reviewed by
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