What's next.... Lupus?? (long)

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Veteran Member

Date Joined Apr 2007
Total Posts : 1366
   Posted 11/18/2011 9:05 PM (GMT -6)   
Hello everyone,
It's been a while since I've visited the Healingwell forums, as I used to be a regular on the Ulcerative Colitis boards but my UC has been in remission for some time now. Plus, my work blocked HW so I had less time to visit *shakes fist*.

I have been on Remicade since January 2009. It has been controlling my UC great, but now, I have a different issue to be concerned about.
I remember distinctly two incidences, the last of which was in April 2009, where I had a severe flare up of strange symptoms. My joints had started to hurt, and it rapidly got so bad that I literally couldn't walk. I had a sore throat, a mouth full of ulcers, I had a fever of 104 for four days straight, chills, sweats... I thought I was dying. My doctor did all sorts of test (though, none for lupus) and they were all negative, so she gave my antibiotics and sent me on my way. Right around this time, I also received my Remicade infusion, and all the symptoms cleared up. It didn't come back for awhile, so I assumed it was some weird flu (which is what she was calling it) and paid it no mind. Then, in March 2010 I got pregnant and had a healthy baby girl in December 2010, colitis remaining in remission the whole time. Everything was great!

Well, in January, the joint pain started to come back. And it gradually got worse until I (finally) got my Remicade, a month late. I figured I was in pain because I was late, but since then, I have the same symptoms every 4 weeks, like clockwork. I get infusions every 8 weeks, so it goes: Infusion... 3 or 4 weeks later my hands and wrists start to hurt, then it spreads until nearly every joint in my body hurts, lasting for 4 weeks until I receive my infusion. During each episode, I also have at least 4 ulcers in my mouth at all times, severe fatigue, a low grade fever, an elevated SED rate, blood in my urine ("UTI"), CONSTANT headaches, and often a sore throat. When I am not having a "flare" of these symptoms, I have constant fatigue, depression, headaches, and a general feeling of being unwell. All the time.

So my GI finally referred me to a rheumatologist, who I saw this week, because my ANA was positive and today I received a copy of my full bloodwork from the lab (I work in the hospital, so I like to check things out for myself..ugh).

Here were my results. (test performed by Quest Diagnostics)

ANA: positive 75 A IU/mL (1:1280-5120) Homogenous
dsDNA Autoantibodies: 20.4 IU/mL

nRNP/Sm IgG antibodies, SS-A and SS-B antibodies, Scl-70 IgG antibodies, and Ribosomal P Protein Antibodies are all Not Detected.

C3- 150mg (normal range)
C4- 17mg (low normal range)

Urinalysis showed blood, leukocytes, WBC, and mucus in my urine. I have no symptoms of a urinary tract infection. Bloodwork also showed low sodium and high MCH (sometimes a sign of anemia, I guess).

I was NOT having a flare up of symptoms at the time of the test, though I would be interested to see how the numbers change when I am and will be requesting a repeat in two or three weeks if she will allow it.

So, my Healingwell friends....... Does this look bad for me? Am I going to have to add another incurable disease to my medical history? My follow up appointment isn't until December 6th and I'm probably going to go crazy thinking about it until then :(

Post Edited (ediekristen) : 11/18/2011 7:15:32 PM (GMT-7)

Veteran Member

Date Joined Apr 2007
Total Posts : 1366
   Posted 11/18/2011 9:12 PM (GMT -6)   
Also... Funny, my last post on HW was when I had that episode in 2009 -

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 11/20/2011 9:11 PM (GMT -6)   
Your ANA is definately high.
I hate to tell you but you're going to have to bite the bullet and wait until December 6th.
Try to focus on the now and not get too anxious about the "what ifs".
It's just a 2 and a half week wait.

I hope you get your answers soon.

Veteran Member

Date Joined Apr 2007
Total Posts : 1366
   Posted 11/20/2011 11:00 PM (GMT -6)   
I know :( I have always been a "what if" worrier. And I have to research everything and know everything, so I've been reading all about lupus the past few days and really... It makes perfect sense. It explains everything I've been going through for the past few years. And at this point, it's not that I'm worried that I do have it (because it seems very likely) but I just want to finally have a name to how I'm feeling instead of just "Hmm... I have no idea what's wrong with you. But it's interesting." I'm so sick of being shrugged off by doctors because they don't know what tests to run or what my symptoms mean, even though it seems so obvious to me now.

Looking at the diagnostic criteria, I meet 7 of the 11 symptoms. It explains why it feels like I'm having problems with my ulcerative colitis even though my recent scope says it's in complete remission. It explains why I am always so exhausted and why I can't do even half as much as I used to without wiping myself out. Why sometimes I'm in so much pain I can't even dress/undress myself. It would almost be a relief to finally at least know what's going on, even if I don't like the answer.
Ulcerative Colitis dx 1999 - in remission on Remicade since 2008

Regular Member

Date Joined Sep 2011
Total Posts : 79
   Posted 11/23/2011 11:36 PM (GMT -6)   
I agree, just to be able to justify myself to myself right now is helpful. I got my ANA test through rolled eyes of my physician, because evidentally me being sick was annoying her for some reason and then BAM....it came back positive. I wasn't lying that I hurt all over, that I fell asleep at traffic lights and the car was rolling, or I would have to pull over to sleep a few minutes to drive home from work. Me being sick was to daggone annoying to the physicians because they thought I should be well after a super traumatic surgery with super significant complications but I wasn't so after four months of getting worse and worse after she rolled her eyes so hard she should still have a headache I tested positive and now the game has begun. I am tired of all of this mess and I wish you well. It is a roller coaster but it is easier to know which roller coaster you are on.

Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 11/27/2011 12:18 PM (GMT -6)   
I know what you mean, it wasn't that I wanted to have Lupus but just wanted to know what the hell was wrong with me. I knew it wasn't pred withdrawal and even when I've been in a bad flare with the Crohn's my memory or energy levels were nowhere near as bad as they are now. The worst thing is the pain around my joints, today feels like they are on fire just because I tried to do some housework yesterday.

I'm glad I have a name to put to it as for one thing it makes it so much easy to explain to people what I have rather than just give them a list of symptoms.
Crohn's, antiphospholipid syndrome, Crohn's arthritis, very low blood pressure, low kidney function, ezcema, asthma, ileostomy, numerous surgeries for abscessses & strictures. Humira - very bad permanent side effects incl joint pain, hair loss, fatigue & nreve damage. Azathioprine, immodium, simethicone, fludrocortisone, oxycodone, gabapentin, tramadol, amitriptyline, Folic acid, vit d & calcium.
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