Posted 8/23/2019 2:38 PM (GMT -6)
Hi, I'm Mike I am almost 60 and I have had ileal Crohn's for about 45 years. After my resection in 1981, I got about three good years without recurrence until I had a small lesion in my neo-terminal ileum. From there I muddled along with the usual prednisone for exacerbations and azulfidine until about 15 years ago. in 2004 I started having fatigue, and joint pains rash and felt rather crappy all over. When all of the drs. at my HMO put it all together I had a seronegative spondylarthropathy (derm and Rheum couldn't agree on psoriatic arthritis or crohn's arthropathy), first occurrence of psoriasis, and first occurrence of small crohn's lesions in my remaining colon. They put me on humira in 2005 with duo-therapy of sub-cutaneous methotrexate. In 2013 I discontinued the methotrexate because of a MRSA infection in my elbow. about a year later, I started having lesions on my tongue the sides of my mouth and glossitis. It became painful and difficult to speak. ENT said oral lichen planus. I tried steroids mouth rinses and needed lidocaine to brush my teeth and eat even the mildest food. Two years later, my lips started swelling intermittently, particularly with cinnamon and benzoates. I had cobblestoning on the sides of my mouth, glossitis, plicate tongue, tags on the sides of my mouth. By then, I had done enough reading to figure I had Orofacial Crohn's disease. I talked a new ENT into doing a deep tissue lip biopsy and the pathology came back cheilitis granulomatosa. Both the cheilitis and the orofacial crohn's are subsets of orofacial granulomatosis. The problem is considered Orofacial Crohn's when crohn's is present (sorry for this oversimplification). While all this was going on, I had been treated by neurology for atypical trigeminal pain. Sometimes I'd feel like I had a sinus infection when there was none. Several times I had injections in the lacrimal gland area and supraorbital nerve areas for pain. Also, my two front upper teeth have been loose and my dentist has glued them together in attempts to stabilize them. While any bone density problems could be long-term crohn's, it seems that some of these nerve problems could be Melkersson-Rosenthal Syndrome, another part of the orofacial granulomatosis.
After performing a thorough search of the literature, I did not find anything about someone getting Orofacial Crohn's disease AFTER being treated with Humira. I did, however, find that Humira was used as a treatment for Orofacial Crohn's disease. Orofacial Granulomatosis often occurs in children as a premonitory sign that crohn's is occurring in the intestine or may occur at some later date. After even more reading, I see that there are "paradoxical adverse events" that occur with TNFalpha inhibitor like Humira. Treatment of one disease causes or worsens another disease that normally is treated with the TNF inhibitor in this case Humira.
Not happy with going on like this with painful mouth an fat lips, I decided to try to get the doctors to change to another biologic that uses a different mechanism. NO DICE. The gastroenterologist doesn't think the face problems are part of crohn's and he's never heard of paradoxical adverse events. I tried to get primary care involved and was tested for sarcoidosis (ACE) and Wegener's granulomatosis both negative. I also had a positive ANA which I never had before and an equivocal Anti-Doublestranded DNA (lupus) probably a result of 15 years of Humira, and not lupus or lupus-like disease. The only doctor who believes me is the neurologist but she does not control my humira. In the middle of this, both my parotids swelled up (3 months now) so I went to ENT again hoping he would probe a little more or biopsy to see if this is more of the granuloma. He said that this swelling was probably more of this granulomatous problem, but felt confident just watching it and that I should call him if anything changes or new pops up. It is clear that my HMO is not going to do anything about these newer problems. I do not want to wait around for more paradoxical adverse events and I also do not want to screw up my crohn's therapy or have new reactions from new biologics. What would you do at this point. The demographic in Hawaii is wrong for crohn's treatment. No second opinions here. There is not an oral dermatologist here and my HMO does not have oral-Maxillofacial Surgeons. What is your advice.