Finally got some test results back

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PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/11/2009 2:38 PM (GMT -7)   
I finally got a call back from the nurse at the Gastroenterologist, and she says out of all the tests that my husbands GI ordered (ESR, CRP, ANA and Anti-histone Antibody), the only ones that were significant were the elevated inflammation (ESR and CRP). She did not give me the actual values, but she said that the ANA and antihistone antibodies were negative.

So does this mean conclusively that my husband does not have lupus? Can we strike lupus off the list of possibilities based on these test results?

Thanks for the assist.
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/11/2009 3:34 PM (GMT -7)   
Your husband most likely does not have lupus. The ANA test is pretty accurate so -- although there is still a small possibility -- he is probably safe from lupus.


+ 34 year old male
+ Crohn's Disease DX in 1997, doc said it was "moderate to severe"
+ Currently taking 9mg entocort and 40mg prozac
+ SCD for past 10 years
+ 4,000 mg MSM, Calcium, Vitamin D, Multivitamin, S. boulardii, Acidophilus
+ Section in lower jejunum is badly strictured (5mm wide opening continues for 10cm!) but otherwise no other problems in bowel
+ No surgeries so far

Post Edited (Carnival Huckster) : 11/11/2009 9:39:10 PM (GMT-7)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/12/2009 7:25 AM (GMT -7)   
Personally sounds like his Crohns is flaring. I had a Rheumy tell me once that joint pain is often a precursor to a Crohns flare. I would think if the tests were negative, he does not have lupus. Sounds like its time to give him more Prednisone to get this inflammation under control. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/12/2009 7:39 AM (GMT -7)   
Wow, having is crohn's flare up is also very scary :-) Given that his last flare with c-diff put him in the hospital for 45 days.

His stools have been pretty normal for over 2 weeks now. As I mentioned he had some bowel issues that the doc put down to IBS after a c-diff infection. Perhaps he was slightly flaring? And now his bowels are under control, but his joints are going crazy. Especially the knee - it is way swollen again. I thought perhaps it was some kind of reactive arthritis associated with IBD - that he just got over something, and his crazy immune system decided it was time to attack something else.

Is that something that happens? A slight crohn's flare followed by joint pain/swelling? Or is joint inflammation always a precursor to a full crohn's flare?

We will be headed in about an hour to see the rheumatologist. The only thing that is giving him any relief (very short term) is having his knee drained. And then it fills up again. He doesn't really have pain in the joint - he has mobility issues caused by the swelling. His neck and back seem much better . . . it's his knee that is still causing a lot of issues.

He's now on 20 mgs of pred, I wonder how high he needs to go in order to suppress this inflammation. We see the rheumatologist today in a couple of hours, hopefully she'll have the magic formula.

I'll let you folks know how it turns out.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 11/12/2009 10:16 AM (GMT -7)   
I wonder if there might be something structural going on in that knee, like a tear or rupture. Has he had some good imaging on it like an MRI? Also, there really is no "always" with Crohns. Every patient is different, every case is different and the disease can vary from week to week or month to month in the same person. In addition, a lot of Crohnies have other autoimmune diseases like arthritis too. One can flare up this week and the other next. It;s like one of those 1,000 piece puzzles sometimes . . .

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 11/12/2009 11:32 AM (GMT -7)   
It could be that an injury has caused an inflammatory response in the area? Even if the injury has healed the inflammation can stick around for a while. My last arthritis flare in my left wrist occured after a playfight when it got twisted, I did have a Crohn's flare about 6 months later but there was no way to tell how directly related it was.
How did it go with the rheumy?
 
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/12/2009 1:00 PM (GMT -7)   
Saw Rheumy. She says negative for RA. She said the RF factor was 15 (normal is 14), but that that can happen for any variety of reasons. She says that if it is a high positive, then, for sure there's some RA involved, but 1 point higher is totally insignificant. Anti-CCP which she says is a far more accurate and specific test for RA was negative. So, so far, negative for RA and Lupus. That is good.

She thinks this is one of 2 things: either IBD related arthritis, or reactive arthritis (caused by either an IBD flare up, or by the c-diff infection). I asked her about enthesitis, and she said that looking at his knee, it was unlikely that it is enthesitis because the inflammation is all around the knee, not just where the tendons attach. She wanted my husband to start right away on methotrexate, but my hubby is reluctant to do that, because he wants to see if he can get past this without adding another medication permanently to the mix.

My husband feels that since he's never had this issue before, that it may be reactive arthritis, which he read can be a one time deal - it happens once, but doesn't usually happen again in most cases. So, he wants to just see if he can make it through without adding the methotrexate, and see if it happens again. I on the other hand, I am undecided on this one.

So, her recommendation is that we up the steroids to 40 mgs of pred a day (20 in the am, 20 at night) for 3 weeks, and take lortab for pain as needed, and get fluid drained from knee as needed, and follow up with her at the end of 3 weeks. Also, she recommended that we pull forward his remicade infusion to 6 weeks rather than waiting for the 8 week mark. I don't know if this on a permanent basis, but for right now at least. I asked her specifically if this could be because of the remicade, and she said that it is very highly unlikely because it was over 3 weeks into his infusion that this happened. Also, I asked her about the antibody to remicade test, and she said that basically most people who take remicade will develop antibodies, but that doesn't mean that you have to immediately stop taking it - so the test while maybe positive, may not mean that his problems are being caused by the remicade.

So, our lovely GI agreed to see us today in about 1/2 hour, to discuss all these findings with us, and tell us how to move forward. I think this is probably the best diagnosis we could hope for. We trust our GI a lot, and hopefully he'll tell us which of these options we should follow, and also if there's any precautions we should take (for c-diff - maybe get tested every so often).

I'll come up and update this post with our GIs recommendation.

Thanks so much folks for your input. I really appreciate it. I hope we'll make it through this trying time with small road bumps, not big obstacle walls.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/12/2009 3:22 PM (GMT -7)   
Saw the GI. He said he really doesn't have much experience with arthritis related to IBD, or reactive arthritis, especially when there is no apparent crohn's activity. He says he would just defer to the rheumatologist. He says he would rather not have my husband on any other immune suppression other than remicade, because he says it increases the risk of certain types of cancer that can be pretty dangerous (t-cell something or other). He says he normally doesn't have patients even take remicade anything less than 8 weeks, but was comfortable enough to move that forward. He says though that if nothing else works, we will try the mtx as well and just monitor him and be as responsive as we can be to any changes. Regarding the c-diff, he just held up his crossed fingers . . . and said if he starts showing any symptoms to get tested right away.

So, the plan is this. Up the dose of pred starting today to 40 mgs. Get another remicade infusion next tuesday. See if symptoms improve or stop. If no improvement is seen after that, then, start the methotrexate, in addition and pred. Then make a decision on whether to do remicade every 6 weeks from here onwards or whether to go back to 8 weeks.

The rheumatologist was all for taking mtx with remicade - I think perhaps that's the standard for people with RA. But our GI is very wary of doing that. Is our GI just being very cautious with playing dice? It seems some GIs default is remicade + 6mp/imuran/mtx, and other like our GI goes just with remicade.

Geez, it is crazy the choices we have to make with this disease! Talk about rock and a hard place. I really need to talk to a therapist or go on some meditation retreat or something to find some joy in life again. I've always loved the fall season with the changing colors, and the nice weather. . . but now everything just seems dreary. The last 19 months, since all this began for us, has been such a darned struggle . . . it's hard to imagine how we'll ever be that couple in their 70s sharing a meal together.

I guess it's time for some mental drugs for me, for a pick me up. I've been trying very hard with meditation and positive thinking etc. to keep the blues away, telling myself that we're at least better than we were last year, when he spent that very scary 45 days in the hospital . . . but it only gets me that far. My house is a mess because I am depressed and can't find the energy to clean, and I am ineffective at work, because I can't focus away from my fear and anxiety, and every morning I wake up filled with anxiety and worry. I have been reading a lot of self help books and trying to practice those things . . . and sometimes I think it is helping, but when I wake up feeling the kind of anxiety I did this morning . . . I think I need drugs.

I guess a therapist would help. I'll go see if I can line up a session.

Thanks for listening to me vent and rant a bit. Hugs to all. I hope you have a good day.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life

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