Crohns and Cimzia and ANA

Hi,
I have Crohns colitis ileitis psoriasis and some flavor of inflammatory arthritis. I'm on Cimzia. I failed Remicade (miserably) and Humira. My gut has seen some improvement and I've had weight gain but over all I have a ton of joint pain and zero energy. (And recently some unexplained weight gain).

I know the ileitis is probably active bc I continue to be B12 deficient and tested for macrocytic anemia, which is when you're b12 deficient and you get large blood cells. I take B12 supplements including injections bc the pills were not doing anything, I assume my ileum is angry bc allegedly thats where you absorb B12.

Despite taking all my meds and supps, I still feel like crap. Recently went to a top crohns specialist and see I tested positive for Anti DS DNA. Could not get this guy on the phone to follow up, was just told to go see this "prestigious" Rheum who diagnosed me with nothing. I went to this same rheum specialist 2 yrs ago and was told I am ANA negative, and so I ordered a copy of those bloods to see if the ANA was a new thing...and found out I was POSITIVE for ANA speckled back then. The eejit told me I was negative when in fact I was not negative. I have never been tested prior to starting biologics so I have no idea if I was ANA positive prior, since I do have relatives on both sides with lupus, sjogrens and colitis I guess it is a possibility that I was already like this?

How do I figure out if i have lupus in addition to Crohns? Specialists are batting me around like a tennis ball. Shouldn't someone at least be concerned that maybe I have medication induced lupus? ***?!!!! I have so much inflammation in my joints and some days I am so weak I need a nap after I shower. Would lupus be present without rash? Or if I have no rash does it mean I don't have lupus?

By the way, in addition to the ANAs, for 2 years I have been showing trace amounts of blood and protein in my urine, I was tested each time for infections, and even sent to a urologist (bc I had complained of bouts of peeing all night--just at night--for weeks at a time). My bladder was scope and I was told I have no infections, but if I have lupus in the kidney, I read it could be causing this. Is there some test I can ask for? Why wouldn't anyone check the kidneys?

Obviously I don't want to go back to specialists who dismiss me all the time. Any insight/advice would be helpful. I feel like hell in a hand basket and I thought I was crazy bc that idiot Rheum told me I was negative, but clearly, if I am positive...something lupus-like may be going on. Since all these drugs they've been loading me on can cause Lupus like syndrome, shouldn't these docs be concerned? All they say is "oh its not that that only happens in less than 2 percent of people." Unless you can have positive for both those ANA things and just have Crohns? And maybe I just feel like crap?

I have never felt good since before I was diagnosed, I'm going on 9 years now. I am tired.

The good news is my psoriasis cleared from the biologics. yay.

Thnx.

Thanks will check it out!

And by alternatives...I mean things like heavy antibiotics for extended periods of time, not yoga and herbal tea. ;)

The first test was positive for ANA. The second test they did was Anti-ds DNA and that was positive with what I was told is a high number. I think, tho, that most tests aren't 100% conclusive but that one looks like it's a "pretty sure" one.

"The anti-double-stranded DNA antibody (anti-dsDNA) is a specific type of ANA antibody found in about 30% of people with systemic lupus. Less than 1% of healthy individuals have this antibody, making it helpful in confirming a diagnosis of systemic lupus. [The absence of anti-dsDNA, however, does not exclude a diagnosis of lupus.] The presence of anti-dsDNA antibodies often suggests more serious lupus, such as lupus nephritis (kidney lupus)."

When I read that I was like maybe that's why I have blood and protein in my urine all the time. Every time that happens I get tested for infections and told it must be nothing because I have no infections, but I have a friend who has been yelling at me that protein in the urine is an indicator of a kidney problem.

What it doesn't say is if you can be positive for this and not have Lupus.

Frankly I don't understand why the doctors don't take this seriously. I'm on a biologic drug that says it may cause a lupus-like condition as a side effect and all they say is "nah, that's only in less than 2% of patients."

I don't think my imagination is strong enough to produce a speckled pattern ANA positive and a positive Anti ds dna test because I don't even know what those things are!

I was also recently diagnosed with PSVT, I kerplopped in public and had to be carted off to the ER.

JaSanne, how do you deal with the fatigue and arthritis? I have a lot of days I can't get up and do anything. Other days I feel fine but lately I have more bad days than good.

I like your sig file.

I've run through humira, remicade and cimzia. I reacted with joint pain pretty quickly to humira and remicade. It took almost a year before cimzia was unbearable to me. With humira and remicade I had a different GI and I pretty much had to insist that it was the biologics causing me fatigue and joint pain and that I was stopping. After remicade, I did have a high ANA count, that did go away after several months. My current GI was a bit better after I went on cimzia. Eventually the rheumy didn't know what to do with me, and suggested I stop cimzia to see if I felt better. The rheumy kept insisting I shouldn't have joint pain on the cimzia, but he did sort of listen.

I think if the side effects are too much, then you stand up for yourself and say you can't tolerate it any more because it's affecting your quality of life. Sorry you are in so much pain, and at the end of the line with drug options. Hopefully you can have a good conversation with your GI and get a plan together.