Bloodwork for autoimmune panel

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mechiko
Regular Member


Date Joined Jan 2011
Total Posts : 82
   Posted 1/3/2011 2:27 PM (GMT -6)   
I get routine bloodwork done every couple months (CBC, liver panel, etc) because of the meds I take (methotrexate, Humira, Plaquenil), but what about the autoimmune panels, ANA, sed rate, etc? I can't even remember the last time I had those drawn, it was at least a year ago, maybe longer.
My ANA has been checked twice or three times, each time it came back negative, along with negative everything else. Because of this and the symptoms I have (joint pain, fatigue, uveitis, Raynaud's, miscarriage, etc), I was told that I am sero-negative for whatever it is that I have (lupus?).
Would it be prudent for me to ask to be re-checked for autoimmune panel? Or am I just pushing buttons... I'm looking for an answer (have been since 2007) but am starting to think I should just give up and learn to live with it! Maybe there isn't an answer at all.
I only get to see a rheumatologist once in a while (about once a year) because of where I live (in Alaska, I have to fly to Anchorage to see one), and my next visit is coming up.
I've been having new and increasing symptoms, more flares, less remissions, crappier feeling during "remission"... you know the story, I'm sure!
Any advice greatly appreciated.

Kathryn

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 1/5/2011 9:59 AM (GMT -6)   
Hi Kathryn. I'm sorry no one got back to you sooner. Since you see your rheumy so infrequently, I think it would be a very good idea to ask for a panel. You should also make a list of all your symptoms no matter how trivial they may seem. Track the frequency of your flares. You should also write down all the questions you want to ask your rheumy so you don't forget. Bring a list of all your meds including any over the counter meds. It took two years for me to get a lupus diagnosis. At least you're on some good meds. Let us know how you're doing, okay? Love, Butterflake
Lupus '05, major depressive disorder, fibro, CNS problems, Sjogrens, diabetes, hypertension, GERD, colitis, 1st stage kidney disease. Cellcept and 12 other meds. Donna

mechiko
Regular Member


Date Joined Jan 2011
Total Posts : 82
   Posted 1/5/2011 8:35 PM (GMT -6)   
Thanks for the reply! I saw my primary today, she's an internist and I love her. She actually said she wanted to draw for another autoimmune panel before I even brought it up :).... So nine tubes of blood drawn plus some urine, maybe there will be something new in there.
I've been finding it really hard to remember dates of flares and such, I haven't had a true remission in so long that they all run together. Last time I had a big flare, I went in for a steroid injection and then a week later I had an infected tonsil which immediately sent me into another flare, which has been continuing since then - about 5 weeks now. Just got started on an oral prednisone taper today.
I had been keeping a journal of symptoms, but last time I saw my rheumy he glanced at it but wasn't very interested, so I stopped doing it... I should probably start again, especially because my memory has gone downhill. There are only a few rheumatologists in Alaska so I'm hesitant to look for a new doctor... the one I have is at least willing to treat me without a diagnosis.
My doctor today asked me if I was feeling depressed and I started crying! I don't think I'm depressed, but just so frustrated with the lack of answers and the lack of understanding from my family.

Kathryn

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 1/6/2011 12:57 PM (GMT -6)   
Hi! Kathryn,
Hang tough, I agree with Butterflake, and I am glad you have a good primary. I would translate your journal into a chronological time line and use only key terms, no narrative. Type in in a word document and use arrows > between dates and symptoms >1997 dx. asthma>1998 tx for depression> etc. It really worked for me and my disability claims, and I know that drs. are more likely to read short notes. I would hand my "nurse note" to my rheumy, and sit there quietly for the first few minutes of my appt. while he had to at least pretend to read them. tongue On my first visit, he laughed at me but said he wished all his pts. were as organized. And tears are appropriate at many times and do not mean you are depressed. My pcp asked me after my ob/gyn did, 'are you depressed??" I had had 5 miscarriages from APS and was falling 3 times per week. I said I was sad because of my lost babies, but demanded he tell me... Am I depressed because I was falling or falling because I was depressed!!!!!!????? I played the game, tried wellbutrin and paxil, and con't to fall. My rheumatologist does ten gallons worth of blood tests plus urine every year, and explained when I asked why bother and tried to bet they would all be wnl, that it is good practice to monitor the values, as the nature of autoimmune antibodies make them come and go.  My ana, anti thyroid and antiphospholipid antibodies are usually positive/ or low, but I am still on alot of prednisone which suppresses your immune system. I know what you mean about cognitive problems. I keep a small calendar by my bed and jot down my current miseries that I can review before my next md appt. and I try and complain in priority order.
hugs,
suetoo
ps. and by the way, it's ok if you ARE depressed and depression is treatable, like so many of our symptoms.

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. Vit. B12 2400 mcgs, Vit D 1000U and  Ambien every night.
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