I have developed a severe skin reaction to remicade.  I have lesions all over my body which are incredibly itchy and sometimes painful.  I did not realize they were from remicade which is why they got so severe.  Of course I am now off remicade and the GI doc wants me to be on Stelara or Entiviyo when my skin clears up  Also my dermatologist wnats me on an immuntherapy drug called dupixent.  Supposedly this a miracle cure, but it is not covered by insurance and is about $1500 - to $1600 a shot, and I start with 2 shots and then 1 every 2 weeks.  For as long as i can afford it, i guess.   Anybody else have thisw problem?  I hope not as i would not wish this on my worst enemy. 

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It’s generally possible to appeal insurance company denials, but it requires patience, persistence, and your doctor’s support. I did it successfully to get VSL #3 DS covered, but it took nearly a year. I had to escalate my appeal to the state Insurance Administration, and even that took a few rounds. Eventually the insurance company caved, and paid all of the bills retroactively.

Generally the insurance company has an appeals process, and it usually has two levels (the second level is to reconsider the first level denial).

Is your doctor willing to invest the time to appeal?

Scott, she is but I need immediate relief. Theoretically this should clear up when remicade gets out of my system, but I don't know how long it will take after that for my skin to clear up. I applaud your perseverance.

Hi my daughter was on Remicade and was getting awful weeping skin lesions or sores all over. We had the derm look at her and she said it was probably a reaction to Remicade. She also said it is not uncommon to have skin reactions and to just treat it with a steroid cream. We did and a few months later she had a bad reaction to it during an infusion. She had to stop taking it and when it was out of her system her skin cleared and she hasn’t had a problem since with her skin or her jpouch. She has been off all meds for almost three years now. 

My choice with VSL was to pay for the stuff, and keep pressing the insurer for reimbursement. I knew there was a risk I’d end up out of pocket, but I wasn’t willing to delay therapy until they grew a conscience. I know that I’m lucky to have been financially able to take that risk, though.

Boda, thanks for the information.  I will be taking Dupixent on Monday which I hope will speed up the the cure of the skin lesions after remicade leaves my system.  I will definitely not be taking it ever again. 

Scott, thanks for the update. I bought 2 syringes of dupixent today for a cost of $3100 +.  I will take your advice and ask my doc to go to bat for me and see what happens. If they say no, I will not be any worse off than I am now.  Like you I am able to afford the drug, but it kills me to do it.  There are better way to spend my oney, but this is so important to me now. 

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