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MimiSashimi

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 #1 
Hello everybody,
I have been feeling severely sick these past weeks. Achy joints and muscles, extreme fatigue, rashes, and I can't seem to keep my feet warm (two pairs of thick winter socks and a heater running directly on them!).
I went to my primary doctor because no luck with rheumatology yet.
I have a positive ANA and SSA, but negative anti-dsDNA (which I read only appears in like 30% of lupus patients?) and negative anti-SM.
I had more blood work due to symptoms and my CRP and ESR are fine, but I have a severe Vitamin D deficiency. I know this can contribute to aches and fatigue, but does not explain the other positives. My WBC is on the lower end, borderline.
My doctor put me on a week of Prednisone at 40mg to see if it helps.

I read it is possible to be flaring with a normal CRP and ESR. There is also an article on this website that says they have linked low Vitamin D to autoimmune disorders, specifically lupus.

Has anybody else experienced this?

EDIT: ANA was very high and homageneous.

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Smith&Lesson

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 #2 
Hi MimiSashimi!

I read your introduction post also and am soo sorry that you are going through all of this!  AI issues are just horrible to live with, and a huge reason for that is because they are so poorly understood by the medical community (and everyone).  You have labs, symptoms, and family history that all point to AI issues so it is good to hear that you are trying to get to a rheumatologist. It is also good to hear that in the meantime you are working with you Primary Doc and responsibly educating yourself. How is the Prednisone working for you???  Please do yourself a favor and keep track of all the symptoms to present to the rheumy, when you do finally get in, and take pics too if/when possible.

[Cakelady advised me to keep a journal when I first showed up here a year ago, and doing so has brought tremendous clarity to my situation. I am able to see what leads up to my flares, how my body reacts to meds/treatments, remember things that I'd surely otherwise forget, jot down ideas or questions, keep track of my ever-changing med doses, vent my frustration, etc.  Also by doing this, I learned the impact that the sun actually had on me.  I had always thought that it did not affect me bc i didn't really get rashes  --but Boy-oh-boy was I wrong!  The journal allowed me to look up what I'd been doing right before an emergent situation and discover what chaos it caused inside me. Robin had warned me about the sun as a newbie, and that incident proved her right.  This board and its members have taught me so much!  I am just incredibly grateful for the contributions here and encourage everyone to share.  Thank you ALL! <3]

Quote:
I read it is possible to be flaring with a normal CRP and ESR. There is also an article on this website that says they have linked low Vitamin D to autoimmune disorders, specifically lupus.

Has anybody else experienced this?


I flare w/o evidence in my bloodwork, although, my rheumy doesn't even bother with labs for that; he goes by my symptoms.  So Yes, it is definitely possible to flare with normal CRP and ESR values.

The Vitamin D link makes sense since we should be avoiding UV rays...  I didn't read the article yet, but am interested enough to look into it now (after a year w/o sun, I'm sure I'll be Vitamin D deficient too) also, I am curious what other reasons there may be behind the link).

Anyhoo, glad you are here for support, and sending happy, healing vibes your way! <3
Robinj

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 #3 
Well gee S&L. Appreciate the shout out . Interesting to see ya back on the board.
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MimiSashimi

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 #4 
S&L

Thank you for your response! It is hard to live with these "hidden" diseases...I look fine but just getting through the day is an accomplishment!
Unfortunately we just discovered that the Prednisone is giving me severely painful migraines. We don't know why, so no more taking those.
Keeping a journal is a great idea! I love writing, so it should be easy for me. Haha. I know what you mean about the sun, except I do sometimes react with a rash. Let me tell you, walking around Las Vegas, NV with family once was a baaaaddd idea. Haha.

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When you go through deep waters, I will be with you.
Isaiah 43:2
Smith&Lesson

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 #5 

MimiS, that really stinks about the prednisone reaction! I personally cannot wait for my megadose of it in the morning since I know I'll feel SO much better than today. [There was a point yesterday that I spazzing out naked in the bathroom, slathered in cold greek yogurt (after trying milk and other crazy things)! lol Still have a mess to clean up in there!  Long story short: I thought that I had cayenne pepper/capsaicin oil to blame, but it turns out it was stupid lupus.] Make sure you take pics of those rashes; the more you build your case, the better.

Robin, why interesting?  I've been around, just not really contributing as much while doing so poorly.

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