Lupus Vs Lymphoma

Hi guys,

I have a question about lupus and lymphoma. Over a year ago I was diagnosed with undifferentiated connective tissue disease and my rheumy adds 'high probability of lupus'.

In the past month, I have been really sick. 4 weeks ago I had fever and severe severe fatigue. The fever was only 99.6-99.8, I had a severe sore throat for one night, fever went away in about 6 days, but overnight the lymph node on the left side of my neck swelled up VERY large, we're talking...a little smaller than a ping pong ball. I went to the doc, who said I might have mumps...only I didnt have any swelling of the parotid salivary gland, just pain. My WBC was 3.7 with normal differenitals.

symptoms resolved over a period of about 3 weeks. The lymph node is gradually getting smaller with time.

Yesterday morning I woke with severe aches again, fever of 100.2, strange feeling in my throat, which by nightfall had turned into a severe sore throat again...felt better in the am...gradually receding over the day today. I now have a sore lymph node on the right side of my neck, lower down, swelling but not as much as the other one. Throat is still mildly sore.

Went to my rheumy yesterday, who checked me out, said I had "shotty" lymph nodes all over. She ordered a taper of prednisone (this will be the first time ever I have taken it and I am scared!)

I am to begin the taper on thursday, to make sure I am not coming down with the flu, which it does not feel like I am. I have had the flu in the past and was much sicker.

She also said (sorry) that if the lymph node in the left side of my neck did not resolve with the prednisone, that I would need to have it removed and biopsied. She did say that the fact that it is getting smaller is a good thing, and the fact that it ballooned over night.

I am worried that instead of lupus, I might have lymphoma. I know this is kind of irrational, and I don't have night sweats, loss of appetite or weight loss... its just... I never really trusted the lupus diagnosis in the first place.

Can lupus do these crazy things?

Thanks so much
Darlene

Wow, thank you Amy..it does help. It will at least help me sleep in the meantime.

Thanks so much for posting.

Darlene

I am sorry I worded that wrong. I am not taking any at all right now, I think I meant a pulse? I will take 20mg for 4 days, then 15mg for 4 days dropping by 5 each time until done.

Hi monkeyme:

I have also had trouble with swollen lymph nodes and fevers up to 100 for years. I did better after I started on an antibiotic, but I also have Lyme which seems to be recurring and a chronically positive EBV (so that might have been part of the problem). When my rheumy put me on Ketek, an antibiotic, the lymph nodes quickly returned to normal.  I've heard others with lupus say they get swollen lymph nodes as well. Having said that though, it's always better to be on the safe side. Just remind them to keep checking it.

I've heard doctors refer to short-term prednisone use as pulses, bursts, and quick tapers. I think everybody is correct!

Let us know how you're doing!

Harmony,

You mention that you have lyme and chronic ebv. If you don't mind me asking, how did you come to find out both of those diagnosises? Just wondering because they suspected lymes disease in me, but the test came back neg and my body would have had enough time to make antibodies as the bit happened 20 years ago.

I did have EBV in 1992 which left me with severe chronic fatigue, and I have NEVER been right since that time. How would I know if I have it chronically, and how does that present? Does it wax and wane?

Thanks so much, sorry for all the questions!

Hugs
Darlene

Hi Darlene:
I was diagnosed with Lyme a number of years ago with a positive Lyme test (and with lupus about 10 years ago). Initially I had a PICC line inserted and had daily IV Rocephin for a number of months. I had visiting nurses come out once weekly to change the PICC line dressing, but I developed an allergy to the adhesives. I ended up having to have the PICC line pulled because of an infection the adhesive caused on my arm which my rheumy was afraid would travel along the line to my heart. My Lyme's test came back negative after that, but my rheumy still checks it periodically and recently it showed up positive again. She has me on oral antibiotics and is trying a combination of supplements to detox my system. She says she is having better luck with patients going through a detox or chelation therapy and then being treated. My EBV titer keeps coming back positive. She has me on an anti-viral for this. My rheumy believes in doing a lot of blood work and she really listens to the patients' symptoms as well. I've noticed over the years on the Internet most doctors said IV treatment for Lyme was not necessary, but that opinion is starting to change. Also, some people say they feel as though they have chronic Lyme, which again the experts said was impossible, but now I find some studies referring to PTCLD (post treatment chronic Lyme disease). I think there is still a lot that needs to be studied regarding this. I've heard other people say they started to have problems after having EBV and ended up with lupus, but I don't know if there is any connection. Some of the symptoms are so similar.

You asked how I tell my symptoms apart . . . I ask myself that same question all the time! I can't. I just know I have chronic exhaustion and chronic pain, joint and muscle pain. As someone was asking on another thread, how do we know when we have the flu? It feels pretty much the same as it always does for us! I have absolutely no idea what is causing what. Sorry I can't help any more than that. You might want to ask your rheumy to run blood tests for Lyme and EBV. Good Luck

(((((Darlene)))))