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caia_120
Regular Member


Date Joined Dec 2013
Total Posts : 108
   Posted 8/13/2018 7:30 PM (GMT -6)   
I'm popping over from the Crohn's forum. I've been dealing with inflammatory arthritis, muscle pain, Raynaud's, Erythromelalgia and sudden onset hypertension within the last few years. My initial problem was the arthritis and joint pain which was treated as an extra-intestinal manifestation of Crohn's. about a year and a half ago I went to my first Rheumatologist appointment and had many blood tests run looking for a connective tissue disorder (I can't recall them all but can look them up) and the only positive test was a low positive for anti-histone antibodies. At the time the Rheumatologist continued treating the pain as seronegative arthritis. I recently went for a second opinion because I was having more problems and wasn't confident with the original Rheumy. This second doctor ordered some lab work; ENA, anti-dsdna, CBC, ESR, CRP, C3 and C4 complement. This time the anti-dsdna test was positive with a titer of 1:20 (this lab uses a 1:10 as a positive cutoff) everything else was within normal limits. I guess I'm wondering what this titer level means, I plan to call the doctor about the result tomorrow, and what I should possibly do next. I am currently on Plaquenil for the joint issues, but this doctor assumed the problem was Crohn's related when I first saw him.

GreenBeans
Regular Member


Date Joined Dec 2016
Total Posts : 46
   Posted 8/13/2018 8:48 PM (GMT -6)   
Check out the Lupus 101 thread - lots of info about ANA tests and what they mean, as well as the list of the 11 diagnostic symptoms for Lupus.

If you are just having joint pain you probably don't have 4 of the 11 symptoms, which is what is required for a lupus diagnosis.

Best wishes.

caia_120
Regular Member


Date Joined Dec 2013
Total Posts : 108
   Posted 8/13/2018 9:08 PM (GMT -6)   
Thanks for the reply, I've looked through the Lupus 101 thread and it didn't really answer my question about the DSDNA antibodies. I probably need to click through some of the links.
I'm having more than joint pain at this point that is just what this all started with a few years ago. I'm currently dealing with mouth sores, joint pain, muscle pain, fatigue and after spending time in the sun I generally feel unwell like I have the flu. This past spring my Rheumatologist's PA thought I had pleurisy. I've had some other unusual health issues lately that doctors usually just shrug off and say are weird like erythromelalgia, the development of sudden hypertension, leaky heart valves and atherosclerosis in my abdominal aorta (I'm 35 active and have a healthy diet). I'm frustrated with doctors currently because I don't think they were communicating with each other well and I'm hoping the new Rheumy will actually look at the big picture and not blame everything on Crohn's disease.

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 451
   Posted 8/13/2018 11:11 PM (GMT -6)   
Sorry you are experiencing additional issues on top of your Chrohns, it can be extremely daunting I know to try and relay to doctors what your are dealing with is different in relation to your typical disease symptoms. From what I understand a person who has a high amount of DSDNA antibodies show up in their blood work has lupus activity going on in their body as DSDNA antibodies are specific to lupus and no other disease. This link might help you understand a little better.

https://rheuminfo.com/common-tests/anti-double-stranded-dna-anti-dsdna/

I hope your new rheumatologist can help find the answers and get you on the correct medication so you can start feeling better soon.

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1827
   Posted 8/14/2018 6:28 PM (GMT -6)   
What were your levels of ANAs (antinuclear antibodies)?

What meds are you on for your Crohn's disease? Some of them can cause lupus-like symptoms and even some positive blood tests related to lupus.

caia_120
Regular Member


Date Joined Dec 2013
Total Posts : 108
   Posted 8/14/2018 8:33 PM (GMT -6)   
The only time I had ANAs tested was in March of 2017, at the time my symptoms weren't as bad mostly joint pain, and they were negative except for Anti histone antibodies which were a low positive at 1.4.

I've been taking Humira for 10 years. In December of 2017 I started taking Methotrexate for the assumed Crohn's related arthritis, the Methotrexate improved the joint pain I was having but I had some pretty bad side effects so I stopped it in April this year. about a month later I started feeling pretty horrible with aches and pains.

I spoke with my new rheumatologist this afternoon and he said it is most likely drug induced lupus so I need to stop the Humira and continue taking the Plaquenil. I guess now I just want to be sure that this is in fact drug induced lupus and not something else.

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1827
   Posted 8/14/2018 8:43 PM (GMT -6)   
Have you had anti-histone antibodies tested?

I wouldn't stop the Humira until further investigation is done, including more blood tests.

caia_120
Regular Member


Date Joined Dec 2013
Total Posts : 108
   Posted 8/14/2018 8:57 PM (GMT -6)   
I had anti-histone antibodies tested in March of 2017 that was when I had the low positive of 1.4. The new rheumy did not want to retest anti-histone antibodies because he said that it wouldn't be useful. It is starting to feel like finding a good rheumatologist is hard to do. He is going to speak with my GI about how to proceed and then I will hear from him again and hopefully I will get more answers about what is going on.
What blood tests should possibly be ordered at this point? The labs listed in the original post were done about 3 weeks ago.

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1827
   Posted 8/16/2018 12:36 AM (GMT -6)   
I would think you're overdue to test them again, anti-histone antibodies that is. Also total ANAs. Another year on Humira is plenty of time for them to *possibly* go way up - if that's the case with you.

caia_120
Regular Member


Date Joined Dec 2013
Total Posts : 108
   Posted 8/16/2018 6:25 PM (GMT -6)   
beave, thanks for your replies. I spoke with my GI today after he was contacted by the Rheumatologist and the GI is ok with holding off on the Humira for a few months to see how I feel, he of course has me on budesonide as a short term maintenance medication for Crohn's until we are certain about the Humira as the cause.
I haven't spoken with the Rheumatologist since earlier this week, I'll ask about running the tests again. I'm beginning to understand what it is like for a lot of Crohn's patients who wait so long for a diagnosis, this has been a very frustrating situation for almost 2 years.
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