Author Topic: Humira and AN's  (Read 2090 times)

dvPete

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Humira and AN's
« on: January 29, 2014, 09:07:51 am »
Hi All -

I'm curious to know if anyone here has explored the connection (or lack of connection) between autoimmune disorders, Humira/Enbrel, and AN's.  The reason I ask is this:

I discovered a 2.5cm AN on my right side last March (2013) and had translab surgery to debulk last May (2013).  During initial surgery docs thought they got all but a tiny sliver left on the facial nerve.  But post-surgery MRI showed 30% of the tumor still there(!)  Long story short, my recovery went really well.  Except for the hearing/balance loss, and fatigue from a 12 hour surgery, I was well on my way to my new normal.  We did have the tumor tissue genetically tested, and it returned positive for NF2 (still exploring all the implications of this).

About 4 months ago I began having severe pain in hips, thighs, and back, which has now spread to my hands, feet, and neck.  I messed around with neurologists for 2 months. Spinal MRI showed no tumors.  After I finally got to a rheumatologist last week, diagnosis is psoriatic arthritis.  I've had psoriasis for 10 years, and was on Enbrel/Humira for 5 years prior to discovery of the tumor.  Rheumatologist wants to put me back on Humira, but I am hesitant.  It seems to me that blocking TNF-alpha could have been the cause of tumor growth in the first place.  Rheumatologist thinks my screwy immune system could have been the cause of tumor growth.  No one knows for sure.

The arthritis has put me in a tough position.  I am basically just one step above crippled right now, and cannot continue like this.  I am trying sulfasalizine, but it so far it has done nothing.  I don't want to go back on Humira for fear of tumor regrowth, but I may have no choice. 

So my question to this group is: Has anyone done any research on the link between autoimmune disorders, TNF-alpha blockers (Humira/Enbrel/etc), and AN's?  My web searching is not turning up anything useful.  Surely I am not the only one out there with this combination of conditions.

I appreciate any and all comments on this...

dvPete

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Re: Humira and AN's
« Reply #1 on: March 25, 2014, 08:49:38 am »
I'm going to bump this up since it's been a while, just in case anyone has some insight.  I still seek input and experience.

I have talked to a number of people in the local medical community, and all agree there is just not very much data out there regarding the relationship of TNF to benign tumors or NF2.  My surgeon is of the opinion that benign tumors are usually 'stealth' to the immune system, so TNF doesn't come into play one way or the other.  I hope he is right as I feel I've had no choice but to get back on the Humira - I was becoming crippled by the arthritis.  The consequences of being wrong on this could be  pretty bad, though...