Remicade FAIL Second Time Around - running out of options

Hi everyone - so I switched back to Remicade after being on Cimzia for about a year because we didn't feel that the cimzia was working. I was having gastro issues again and horrible mouth sores. Had the infusion last Monday (12/29) and literally started feeling better the next day. Mouth sores cleared by the weekend. Then this Wednesday woke up with some slight knee and neck pain but just thought I slept funny and went on with my day. My dad and sister came over for dinner Wednesday night and when I started making dinner my knee was just sore, by the time they were leaving I was limping around barely able to put any weight on it. Husband cleaned up and put son to bed and I took a bath. By the time I got out of the bath I could put no weight on my knee and was almost in tears. It hurt so bad even when I was lying down that my husband and I were talking about going to the ER. I opted not to go for a number of reasons - but mainly because a trip to the ER has never just been a trip for me, they always seem to find a reason to admit me and I waste a week of work and family time blah
Blah - basically I hate the hospital (rant over). So I sent husband out to get some ibuprofen (bad I know, but necessary) and took that with Tylenol and tried to get some rest.

When I woke up the next morning I could barely move, literally. Called arthritis DR and got an appointment for Friday afternoon and just lied in bed all day Thursday. Friday woke up with even more severe pain in knee, hip, shoulder, wrist, and jaw. It was horrible! I needed my husband to basically carry me to the bathroom. At that point I realized there was more than an arthritis flare in my knee going on so I called my GI. He said it sounded like serum sickness from the Remicade and he called my arthritis DR and they consulted on a plan. When I got to the arthritis doctor he hooked me up to an iv with 120mg prednisone and a script for Humira. Woke up today and am 90% better.

So, questions:
- I felt pretty good all day but now (11 pm) I'm feeling achy in my hips and am worried it will escalate again. Do you guys think 1 infusion of 120mg prednisone is enough to settle things completely or do you think I'll need more?
- I was on Humira years ago and it worked great until it seemed to stop working, at which point I switched to Remicade. Do you think the Humira will work now? Will I have a similar reaction that I just did to Remicade?
- My GI DR is going out on medical leave and suggested turning over my care to my arthritis DR (completely different practice) for the 3
months he's gone since the Crohn's and arthritis meds are the same. Bad idea? I think I would rather work with a DR I am familiar with and have a rapport with than some stranger that works in my GI's office. I guess if I had strictly GI problems I would have to call the GI office, but any medicine/external crohns manifestations I think my arthritis DRUG is capable of addressing (he specializes in Rheumatoid Arthritis and Crohn's arthritis), but I'm still weary.

Oh my gosh - I'm sorry this is so long. It has been a crazy few days and my biggest concern is that I have exhausted all biologics and now what?? Any advice would be greatly appreciated!!

Thanks Ides! So sorry to hear about your mom. Thoughts are with you!

Hi Myrne,

I'm sorry you've had such a tough time. Maybe the Rhumetologist might be able to help by treating both issues.

Have you thought about another Anti-TNF? Particularly the latest Vedolizumaub? There's also Simponi or Stelera. It seems that Remicade and Humira have done as much as they can for you. Perhaps Humira can work again though. Good Luck with your decision.

Thank you for the replies! Sorry it has taken a while to respond, it seems like this whole ordeal has started a flare. The IV steroids helped with the Remicade reaction. I want to point out that Remicade worked really well for me about 2 years ago until I ran into a huge flare from some antibiotics I took for a non-Crohn's related problem. That, and a bunch of scar tissue causing very painful strictures, led me to surgery. After surgery I decided to try Cimzia because I was sick of going to the infusion center. It appears that in the time I have been off of Remicade I have developed antibodies :( I just took my first Humira shot on Saturday. I have also been on Humira before, but I guess the change of developing antibodies on this is less since the use human protein instead of mouse.

Since the Remicade reaction I have had an increase in my mouth sores, fatigue, nausea, and decreased appetite. I think I have lost about 10 pounds in the last 3 weeks. Luckily, I don't have any real abdominal pain, just discomfort and diarrhea. I am lucky that my work-load has slowed since Christmas and this week I really didn't have any appointments so I have been sleeping in and taking it easy. But next week if filling up work-wise, plus my birthday is coming up and I am getting calls from family and friends about celebrating and I really hope I am up for it.

This is all taking a toll mentally as well as physically. I hate that I have to rely so much on my husband to pick up the parenting responsibilities and I was almost in tears last week about numerous careless errors that I have been making at work and was called out on (telling a client the wrong time for a meeting (allegedly - but probably), typos in reports, not meeting deadlines). I am a perfectionist and this is driving me crazy. I also have certain expectation of myself as a mother and wife and hate not meeting those. My husband is busy with work and grad school and I feel horrible adding to it grocery shopping, cleaning, cooking dinner, the majority of hard tasks with our son (bathing, dropping off to daycare, entertaining on the weekends, etc.).

I am also not keeling over in pain right now, so I wonder if I'm being a wimp, but my energy is sooooo low. My heart is racing but I don't have the energy to stand for much more than a few minutes and I feel really dehydrated despite all attempts to keep drinking. I feel shaky and dizzy. Last night I passed out at 9:30, but was up at 1am until 6am with an "upset" stomach, racing heart, and nausea. I finally fell back asleep at 6 and slept until 11. Just finished a report for work that should have been out yesterday and I am trying to force myself to shower, pick my son up from daycare, and go to the grocery store to get something for dinner for my family and my dad (who comes over every Wednesday). It will be something very simple.

What are your thoughts? I have this nagging in the back of my head that I need to go to the ER for fluids, but I am VERY resistant. I am afraid they'll try to admit me. My GI is on medical leave and I don't trust calling his office. No one else knows me there. This also limits my ability to discuss new meds at this time. I am being followed by my arthritis doctor and don't know if he knows about all the other types of meds. I have an appointment with him Monday though, so I will discuss.

I'm ranting again. Thanks again for your responses and ideas. I do think it is about time to change direction in my treatment, but I think this will have to wait until my GI returns. If I don't feel better by Friday I may just call my surgeon and see what she thinks about getting some IV fluids. I stay in touch with her feel she will be helpful even if it is not surgery related. I wonder if having 3 feet of my small intestine removed is affecting how I absorb water. I really feel like even water goes right thru me when I'm like this. I drink a cup of water and 5 minutes later am running to the bathroom.