Anyone taken remicade or humira and ANA was positive prior to getting

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ButterflyT
Regular Member


Date Joined Jun 2013
Total Posts : 26
   Posted 6/8/2013 9:52 PM (GMT -6)   
Does anyone know if I should not have gotten remicade because my ANA was positive prior to getting? Or has anyone been given remicade with a positive ANA before remicade? Please view my previous thread titled Help for more info.
_________________
Crohns dx in 2005, bowel resection in 1995 but was told I probably swallowed a bone. Peripheral neuropathy dx 2006, Pulmonary fibrosis dx late 2007 after lung biopsy, fibromyalgia dx early 2007, osteoarthritis in left hip dx 2006

4 remicade infusions, 10mg prednisone just increased to 20mg after seeing PCP on Thursday, nuerontin 300mg in am and 600mg at bed, klonipin 1mg am 1mg noon and 3mg at bed, Vicodin 5/500 1 am 1 noon and 1 at bed, zofran 8mg dissolvable every 6 hrs, promethazine 25mg every 6 hrs alternated w the zofran so taking one nausea med every 3 hrs, monthly b12 shots, calcium, vitamin D, multi vitamin

PV
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Date Joined May 2006
Total Posts : 1177
   Posted 6/9/2013 9:37 AM (GMT -6)   
A positive ANA test is not a conclusive diagnosis of any disease. It is one of the tests that help with diagnosis along with clinical symptoms and other lab work. Without clinical presentation of disease, the ANA means little. From what I've read, some women over 65 have a positive ANA with no disease. Also, some blood pressure meds can cause a positive ANA result. Also, people with an autoimmune disease like crohns are likely to test positive for ANA. So, ANA test is really only useful when you have presenting clinical symptoms of lupus. If your symptoms match lupus, and your ANA is positive, then, you may have lupus. The ANA test itself is non deterministic of disease. Remicade also can cause ANA positive but the vast majority of people on remicade don't have lupus.

Did they test you for anti ds dna? This test is pretty specific for lupus and drug induced lupus. If remicade is causing lupus, anti ds dns will also be positive.

I hope you feel better soon.
PV

ButterflyT
Regular Member


Date Joined Jun 2013
Total Posts : 26
   Posted 6/10/2013 1:51 AM (GMT -6)   
Thank you PV, basically they did nothing wrong in prescribing remicade to me even w a positive ANA is what I'm understanding. A little more assured.
I had labs drawn on Thursday and my PCP gets back in her office on Tuesday. Hope I'll have some answers and not lupus or drug induced lupus. I've heard that can take a little while or long time to go away some people have lasting problems. I have 8-9 of the lupus symptoms I found out, but had them for a couple years. This is really different though. Given birth twice and I'd rather be in labor right now.

I'm trying not to stress and play the waiting game w/I a visit to ER. I don't want to go but I've been hurting so much I can't sleep and its been more then a week. I will see what later tonight brings.

Thank you for your help
___________________
34 yr old female dx w Crohns in 2005 but had bowel resection in 1995 and was told I probably swallowed a bone. They didn't find a bone the surgeon assumed. So I think I went 10 years before I was diagnosed though pathology report from resection said it wasn't Crohns no foreign object yada yada :) many other dx I need to set up a signature.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 6/10/2013 8:44 AM (GMT -6)   
It sounds to me like 20 mgs of pred is really not enough to help calm things down. While you are waiting for results, I'd call the doc and see if you can go up to 40 mgs. I know pred is evil in the long term, but it really sounds like you need it right now. So, my advice is to bump up to at least 40 mgs of pred after consulting with your doc.

Have you ever been on methotrexate? A rheumatologist my husband saw said that it often works really well for arthritis (even crohns related and rheumatoid arthritis) and lupus. When my husband had a bad bout with arthritis, she suggested adding methotrexate along with remicade. We opted for a course of steroids and decided to try methotrexate if he had a flare up again. So far, we've been lucky.

My suggestion is start higher dose of pred, get you test results, and if needed add methotrexate to your meds. If you have lupus or drug induced lupus, you'll have to stop the remicade. You can try other TNF inhibitors like humira and cimzia after you have recovered if needed.

I hope you get pain relief very soon

PV
Husband with Crohn's
Meds: Canasa (1gm), Lialda (4.8 gms), Remicade (10mg/kg every 8 weeks)
Supplements: VSL3 (2 packets), florastor (4 caps), bee propolis and lots of Greek yogurt
Currently In Remission

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 562
   Posted 6/10/2013 2:34 PM (GMT -6)   
How do you know you had a positive ANA before you started the remicade? I did get Remicade induced Lupus and my GI and Rheumy agreed that 20 mg of prednisone/day and a 25 mg shot of MTX weekly was the answer. They were right and I had joint pain so bad I couldn't move. It took about one year for my ANA to return to negative and that is when I started Humira and have been on it for 6 years now. Always remember when increasing pred. it can mask things and it also will make your WBC higher in itself. Don't do anything without talking to your doctor first as they may want to do tests on you.

All the best, hang in there I know the pain is unbearable.

Julia

ButterflyT
Regular Member


Date Joined Jun 2013
Total Posts : 26
   Posted 6/10/2013 6:17 PM (GMT -6)   
Sounds like increase in prednisone is what I need. Unfortunately I've already tried humira and cimzia so can't take those, believe the cimzia caused my pulmonary fibrosis. My first pulmunologist told me to never take methotrexate. My options are not looking good.

I found out my ANA was positive with a speckled pattern 1:40 also found out I'm HLA-b27 positive in 2007. I was in a lot of pain so I was referred to a rheumatologist, a resident at a teaching hospital she told me it meant nothing and diagnosed me with fibromyalgia said I needed no further follow up.
Hoping to get test results tomorrow. My PCP isn't in the office today, but I might call her office and see if someone can help me.

Thank you so much PV and Julia

Tiana

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 6/10/2013 7:27 PM (GMT -6)   
It sounds like you may have ankylosing spondylitis given that you are Hla b27 positive and you have pulmonary fibrosis. I believe remicade is a treatment for that, as is humira and cimzia. I'm not sure that cimzia caused your pulmonary fibrosis, it could be something that was caused by severe ankylosing spondylitis.

It does sound like methotrexate is out because of the lung fibrosis - from what I read, it could make it worse. So,it sounds like right now, your options are steroids and steroids.

There are 2 drugs in the crohns pipeline that may benefit you - please talk to your doctors about them to see if it will be safe for you to try. One is Stellara - it was recently approved for ulcerative colitis and there are clinical trials for crohns going on right now. A friend of mine was prescribed Stellara for crohns because she failed everything else, and she's in remission now. The second med is vedolizumab - this is in the process of getting FDA approval, but there are clinical trials ongoing that you maybe able to sign up for. I've heard lots of good things about this drug.

Both these meds are ot TNF antagonists and maybe safe to take even if you have lupus. But I'm not a doctor, you'll have to check with them to make sure, and they'll have to fight to get you into a trial or for insurance to pay for it.

Start with prednisone to get some quality of life back while you look into these options. Hang in there, there are options, and hopefully you'll find a way out of this soon.

PV
Husband with Crohn's
Meds: Canasa (1gm), Lialda (4.8 gms), Remicade (10mg/kg every 8 weeks)
Supplements: VSL3 (2 packets), florastor (4 caps), bee propolis and lots of Greek yogurt
Currently In Remission

ButterflyT
Regular Member


Date Joined Jun 2013
Total Posts : 26
   Posted 6/15/2013 2:43 PM (GMT -6)   
My doctor called w lab results. My ANA is negative now she said. How could it have been positive in 07 but now negative? My RF factor wasn't normal, though it wasn't really extremly abnormal she said. She talked with my GI in another state and their recommendation is to see a rheumatologist ASAP, continue remicade infusions, but premedicate me with solumedrol and start taking 200mg of azathioprine a day. I've taken azathioprine before and it made me pretty sick. I'm a little worried about so many immune suppressants. I'll be on 20mg of prednisone, 200mg of azathioprine, and remicade. Thinking I'm going to get a lot sicker from meds before I get better. Has anyone taken this combo of meds?
Any suggestions for what lab tests to ask a rheumatologist?
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