Update

Joy spent 9 days in Tift General Hospital from Sept 11 till Sept 19.  The crohn's flare became more active and she couldn't handle the pain.  On Fri, Sept 9 we got back from Mayo after meeting the surgeon.  His outlook was pretty grim.  The only way to bring relief was to remove the remaining colon and rectum.  He said that everything else had been tried with no results.


The next day Joy read up on medications, just in case there was some chance to avoid surgery.  She found 1.  Stellara.  It is an Interlukin 12 and 23 inhibitor.  All the other bioligics she has been on have been anti-TNF drugs.  Being that this is a different class, there is a chance it could work.  Clinical trials have shown good success in bringing crohn's under control.


After Joy got out of Tift General, within a few days she was in a pyroderma flare (crohn's of the skin).  We made an appt with Mayo to get this treated with steriod injections.  While there, we sat in to see if the gastro had an opening.  Thankfully, he did.


We talked to Dr Camgemi about the possibility of Stellara.  He said it did look promising but the clinical trial was over.  But he did say that there might be hope still.  He is going to contact the Pharmaceutical Company (Jantzen) to see if they can do what is called a "Compassion Rx".  This means that though the medicine isn't FDA approved for crohn's yet it is through with clinicals, they Pharm company can put in for the ins company to approve the med - or give the med free or at reduced cost if the ins does not allow. 


They will do this when all else has failed and surgery is the last option (or some other major intervention). 


If she gets approved for the new med, even though it is an injectable like the others she has been on, it has to be mixed at the dr's  office according to weight and other factors. It will be given once a week for so long, then every other week, etc. This means even more trips down there (about 500 mile round trip).


The first shot we are going to stay at the hotel for a couple days just to make sure Joy has no serious reactions.

If the ins doesn't approve this and the company doesn't give it at reduced cost/free, we have read that it costs around $15k for the first month of treatment. Month 2 is 2 treatments, then month 3 is just 1. After this, there is 1 shot every 12 weeks. So it is around $3700 per shot.