My rheumatologist's take on my recent Humira reaction

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   Posted 1/30/2008 7:03 PM (GMT -7)   
Saw my rheumy yesterday and we went over the events of the last almost 2 months. When I told him the symptoms I had after my last Humira injection. He feels that I had a lupus event, not serum sickness as my GI diagnosed [by phone].  He said that since I had developed anti-dsDNA antibodies when taking Remicade, that I was at higher risk to develop them on Humira. Some recent reports show that people with similar histories on Remicade, had some whopper Humira induced lupus events.
In addition, it is thought that the EKG changes seen a week after the reaction started were caused by the "lupus event." I go for a cardiac CT scan in two weeks. Can't do a treadmill because I am still in a boot cast because the bone fragment is not reattaching to the fibula.
My rheumy was distrubed that noone bothered to do the appropriate lab tests to determine the exact cause of the Humira reaction.
Just thought I would share my rheumy's thoughts.
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CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?

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   Posted 1/30/2008 7:50 PM (GMT -7)   
Ides, how awful for you. I hope you feel better soon. Your rhuemy seems to be on top of things hopefully he will be able to sort this out and find something that will work for you without all of the side effects.

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   Posted 1/31/2008 3:16 AM (GMT -7)   
Hi Ides, I am glad your Rheumy is on top of things. I think maybe its time for you to find a new Gi doctor. It seems the one you have is not that caring.

Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007

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   Posted 1/31/2008 4:21 PM (GMT -7)   
Hey Ides.. a Lupus Event, huh? So did he say if this was 'always' going to happen with the Humira if you do another injection? Does this mean that you have Lupus now too? Geez... I'm so sorry.. but at least he's looking into it.. seems as though you've had a run of doc's missing the important things lately.. Hang in there, and keep us posted!
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   Posted 1/31/2008 6:43 PM (GMT -7)   
Well, my blood test for the specific lupus signs was not done until 4 weeks AFTER my last Humira injection. The anti-dsDNA antibodies were gone by then. My C3 Complement was still low indicating I still had some lingering inflammation from the lupus antibodies effect on me. I officially was diagnosed with Remicade induced lupus 6 months after I started that. I continued to take it for another 2 years with a diagnosis of "diffuse connective tissue disease." Since the reaction I had to Humira was so severe, both the GI and rheumy said "no more." My rheumy said that I don't have to continue with the every 6 week lupus blood tests since I have stopped the biologics. I guess if the next one shows that I have a normal C3 Complement, then I will lose the connective tissue disease diagnosis.

In defense of my GI - I basically called and told them what I thought was wrong - that I had serum sickness. They wanted me to go to the ER and I did not want to go because the hospital I have to go to would definitely not know what to do with me [as shown by my visit there the following week.] I did call and leave a message for my rheumy about what was going on. I asked to speak with the nurse and the receptionist said to give her the message and she would pass it on to the nurse. When I was at the rheumy's office Tuesday, there was a new receptionist. Come to find out the other one was fired because she would take calls from patients and not pass them on. My rheumy said had he known what was going on he would have brought me right in. Henceforth I shall call his office if something like this happens again.

My rheumy is so cool - he has every Wed morning off. He is coming in next Wed morning just to ultrasound my ankle. He wants to see if the bone fragment is reattaching and how much joint effusion remains. Seven weeks in this cast and I still have a LOT of swelling. He also said he wants to talk to me some more about my cardiac symptoms. Apparently there is some problem and there are two possible causes - the lupus event or the actual medication. He said regardless, he has to report the problem to the company because they are tracking these things. I am a little freaked out by all this.
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CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?

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   Posted 1/31/2008 9:51 PM (GMT -7)   

Could you be more specific about the "diffuse connective tissue" symptoms? I'm so sorry this has been ongoing for you! I too built antibodies to Remecaid, switched to Humira, got a fungal infection that won't go away, however, I keep having reoccuring rib cage pain "connective tissue" thing! So you see I would appreciate your input. I don't have a rheumy and if I were referred to one, I'm sure it would be my GI's husband which is in the same group.
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.

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   Posted 1/31/2008 10:59 PM (GMT -7)   
BH - the symptoms are as varied as the diseases that fall under the category of connective tissue disease. Rheumatoid arthritis, Sjogren's, lupus, etc are all types of connective tissue diseases. I believe I got this classification based on two things, my lupus antibodies and the fact I have AS. From what I have read, they are now finding a connection between those that are HLA B27 positive and the connective tissue diseases.

I see you list joint pain as a symptom. I think you owe it to yourself to get evaluated by a rheumatologist to see what's cooking and if all of your symptoms are somehow connected. It was the best thing I did.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?

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