Remicade antibodies & Can't do steroids (adrenal insufficiency) where to go?

April 2015 start of current flare started Uceris and it did nothing

Jun 2015 prednisone. Pred was great, tried tapering several times, but as soon as I got to 10 MG I'd flare again.

Nov 2015, Hypertensive crisis ER/Hospital admission as they had difficulting getting BP down and staying down.

Jan 1 2016 off steroids, but then I was dx with secondary adrenal insufficiency with almost zero function... very sick! Gained about 90 lbs from the prednisone. Started hyrdrocortisone 15 mg a day for the secondardy adrenal insufficiency and later upped to 20 mg a day (has 1/4 the strength of prednisone but is shorter acting).

Feb 2016 Add Ucercis. Still didn't do a darn thing.

Mar 2 2016 Remicade 1st. Abdominal pain went away quickly, pudding like BMs with freq down to 5-6 :)
Mar 16 2016 Remicade 2nd. BMs and arthritis pain went away for 3 or 4 days, but after everything comes back.
Apr 14 2016 Remicade 3rd. Never felt great like I did after the 2nd infusion, things go down hill.

Apr 17-May 13 2016 so sick I wanted to die. Starts with hives and fever. Fever spikes and I give emergency injection of hydrocortisone, ambulance, ER trip. ER doc is an idiot he has admin job at the Pentagon. I tell him I'm in pain and the he says my issues are of chronic nature. I go down hill immediately after discharge.
Liquid diet, 10x day water diarrhea like a colon prep. Dx with C-Diff even though stool tests were negative. Prison in my own home. 3 different antibiotics with 2 rounds of vanco. Whole body hurts feels like bad arthritis joint and body pain. Double hydrocortisone dose and taper after really bad spell comes to an end.

May 13 2016 Remicade drug level 1.7 no antibodies.

May 13 2016 add 6PM 50 mg.

Jun 2 2016 Remicade 4th. Similar to how I felt after 2nd infusion, back to BMs 4-5 times a day, but still pudding like. Joint and body aches go away, but but come back after two weeks and BMs go back to 5-6 times a day.

Jul 11 2016 GI says do infusions monthly for now and up dose from 7 vials to 10 vials (I weigh 255, down from high of 262, but normal weight is around 170 before flare and prednisone).

Today, Jul 21 2016 found out that my blood work taken just prior to last infusion (7/11) says that my Remicade antibody is now 75. First time results for 6pm 6-tgn is 248 and 6-mnpn is 909.

Oh, I have terrible muscle cramps and take potassium and calcium supplements, Can't take magnesium because it gives me the runs even if I try to split the dose throughout the day. No longer filter water so that I can get all of the trace minerals.

Where do I go from here????? I'm on the verge of loosing it!

Does this mean I have to switch to Humira?

Back in April I was having a really bad time (treated for C-Diff but negative results), several rounds of antibiotics and 2 rounds of vanco. My primary suggested getting a second opinion/switching GI docs. My primary is great, but is honest in that he knows nothing about Crohn's. He knew instantly when I was had 2nd adrenal insufficiency.

In hindsight, my GI's docs regular nurse is an idiot who knows nothing about GI issues. I now only call and speak with his infusion nurse and he is using the infusion nurse to speak with me more frequently which is helpful. The infusion nurse is very accessible, knowledgeable and amazing. After talking to her, I noticed a big change in communication btw me and my GI doc. He added 6PM, feedback on when to increase remi frequency and later the dose.

Yesterday I went to see one of the two IBDs doc at Georgetown (it took 3 months to get into see him). They claimed to be a team/collaborative care center, but it appeared to be advertising. Me and my primary were hoping that I could use a team approach given all of my health issues and specialists (GI, Endocrine, asthma, allergy, pulmonary and may have to add rheumy). I wasn't impressed at all... he seemed more interested in getting me to switch to their infusion center vs helping me navigate my options. I think he just saw $$$$. The IBD section wasn't run very well. I live in the burbs and cringe at the thought of driving into DC when I'm sick. I work in DC, but work from home on bad days b/c I physically can't sit in traffic for an hour with no access to a bathroom on the bad days. Makes no sense in seeing this doc.

I only saw improvement for a few days to 10 days after my infusions. My last infusion was 7/11 and I didn't see much improvement GI wise as I've had after other infusions. There was some improvement of body and joint pains.

I don't know why my signature isn't show up.

I have always felt my immune system is in overdrive. Over the last few years I've developed adult onset asthma, adult onset severe allergies and I'm getting allergy shots, immune responses to flu and pneumonia vaccines.

2014 was my best Crohn's year, but I was on prednisone 7 times for bronchitisX2, pneumoniaX2, allergies and recurrent asthma attacks.