Recovering from Remicade Reactions

Hi all!  I know it's been quite a while since I've posted anything.  It's been a long slow recovery from all the Remicade reactions.  The docs may not agree but I believe ALL the problems I've had since September can be attributed to Remicade and auto-antibodies my system built up to it.  In short.. I was on Remicade for one year and developed auto-antibodies which means my body was fighting it.  I've had lethargy and weakness, elevated liver enzymes, autoimmune hepatitis, inflamed gallbladder, abdominal skin rashes, red eyes, and swollen painful joints to the point of barely being able to walk or turn on a light switch.

Swollen Ankle Joint No Injury

Strange Lumps moving up from Swollen Ankle

One Red Eye

Interior view of Gall Bladder

Gallbladder Removal Surgery Incisions Healing

Since stopping the Remicade I've had my gallbladder removed and am being treated with Azathioprine for the hepatitis.  As of this past week my blood tests reveal that my liver enzymes are normal.  Stool studies reveal I am not having inflammation.

Physically I'm now normal with the exception of lethargy.  My hair is falling out at an alarming rate which is probably due to the Azathioprine.  I'll be adding some folic acid to my vitamin regimen to hopefully slow down the hair loss.  Already taking Biotin.  I'm still not wanting to do much, but I'm trying every day and sometimes I manage to get rolling!

Yep Waiting in a Doctor's Office

That's about it for now.  Things are looking better every day.  Thanks for listening!!

Remicade Reaction Gallbladder Removed

Wow! Time for a post. So the Prometheus test showed I definitely had a reaction to Remicade. I had built up autoantibodies. This is what caused so many of my symptoms. Especially the rash and the migrating joint pain and swelling.

The doctor still wanted my gallbladder removed because of the low ejection fraction and the possibility of  causing future problems. The surgeon removed it 3 days ago and performed another liver biopsy and a hernia repair. I am doing very well. Everything went smoothly and I'm healing up nicely.

I don't have any joint pain at this point so I hope my system has fought off the remicade and I am on the mend. I feel pretty good and I hope to heal up from this surgery quickly and start getting strong again. Maybe the gallbladder has been a little toxic to my system because I sure feel a lot better overall. Who knows.

Is This a delayed Remicade Reaction?

Hi again!   I am slowly feeling better.  We finally have some sunshine today and crisp, clear blue sky. Makes a body feel good.

Recap:
Lately Diagnosed with autoimmune hepatitis, gastritis, and an inflamed gallbladder.  Gallbladder removal surgery is tentatively scheduled for January 28.  Still waiting for results of the test for antibodies to Remicade.  Did not have latest Remicade infusion this week per doctor's orders.

My symptoms have really gotten much better:

 •Constant upper abdominal pain is gone
 •Headaches are gone
 •Stiff muscles much better
 •Pain left back under shoulder blade difficult to take deep breath - gone
 •Puffy eyes better
 •Very bloodshot left outer eye - gone
 •Swollen bruised left ankle no injury - all better
 •Painful neck gone

 •Weakness Lethargy
 •Joint pain - much better latest just in hands and hips
 •Jaw pain
 •Stiff back muscle middle back right of spine (that's been there since before this started)
 •Abdominal rash (large red itchy bumps that come and go)
 •Different itchy areas on torso only now
 •Very weak and tired and seem to require a lot of sleep
 •When I wake up in the morning I'm all sweaty

Treatment of symptoms now:
 •Bland diet

Honestly I feel like my body has been fighting something since September. Perhaps it's all been a reaction to the Remicade. Hopefully I will find out soon.  I'm still not sure about having my gallbladder removed. I will have to talk more to my doctor about it after I find out the results of the Prometheus test.  I want to be able to eat regular food again so if it means my gallbladder has to be removed in order to do so then I will follow through with it.

Stop All Meds

Quick update...  Went to surgeon she checked me out and explained the whys and hows of gallbladder  surgery and got it scheduled.

Went to Gastro. She was concerned about joint pain and inflammation. Suspects Remicade reaction. Sent me to lab for blood work. Postponed surgery. Postponed remicade infusion. Stops all Meds.

Supposed to get mobile phlebotomist to come to house Friday for Prometheus IFX ASSAY. I was hobbling all over the hospital lol.  BP 87/63.

Gallbladder Removal Coming Up

Hi!  I'm back from my trip. I had to take it really easy on the cruise, eating a bland diet and spending time at the spa trying to get myself feeling better. I've been in quite a lot of pain especially after I eat. Therefore I've lost about 5 pounds and even threw up in a plant by the elevators on the ship.  It was all water so maybe it was good for the plant!

So with all the test results I've had they've discovered that on top of my Crohn's, I have autoimmune hepatitis, gastritis, and an inflamed gallbladder.  I have an appointment with a general surgeon next week for a consultation on the gallbladder removal surgery.

I certainly don't understand why all this has happened. I know that back in September I didn't feel well for about a month and I blogged about it. Maybe that was the beginning of these new problems.  I don't know if my Crohn's is the cause of all these other organs having problems. I'm quite suspicious that it may be the iron infusions that started this cycle of organ destruction. I also wonder if it's perhaps the Remicade itself.

My symptoms are as follows:

Constant upper abdominal discomfort that turns into waves of severe pain after eating
Weakness
Lethargy
Headaches constantly
Joint pain - elbows, knuckles, finger joints, ankles, knees, feet, hips (worse in evening also different places daily)
Painful neck
Jaw pain
Stiff muscles
Stiff back muscle middle back right of spine (that's been there since before this started)
Pain left back under shoulder blade difficult to take deep breath
Puffy eyes
Abdominal rash (large red itchy bumps that come and go)
Very bloodshot left outer eye
Different itchy areas on upper legs bruise if scratched
Swollen bruised left ankle no injury

Treatment of symptoms so far:

Nexium 40 mg 2/dy
Carafate 2/dy
Norco as needed (every day)
Bland diet

I am suspicious that the Nexium is causing all the joint pains and muscle stiffness so I am going to discontinue taking that.  The joint pain is so bad in the evening that I have to get my husband to open a bottle of water for me and help me with getting into bed and turning off the light switch on my lamp.  I feel like I'm 95 years old at that point!

If anyone has had similar problems, symptoms please share with me. Knowledge is power.

Crohn's Liver Stomach Problems and Autoimmune Hepatitis

Got to go to a Cowboys Game!

My liver enzymes were high at last two Remicade infusions.  After several tests I had a liver biopsy last Thursday.  Results are that I have autoimmune hepatitis.

I had an endoscopy yesterday and it showed inflamation in my stomach and duodenum.  This explains the severe stomach pain I've had since before Thanksgiving.

I had a HIDA Scan this morning and will find out the results later.  I am RADIOACTIVE! :-) for a day anyway.

Migraines also started back up in the last week.  I've had three.  So basically I've been a GIANT MESS. 

Leaving for a Christmas Cruise tomorrow and hopefully I've got all the medications I need to get me through this one.  I feel like I've been living at the hospital for the last week and will be glad to get away from all the procedures and have some much needed rest.

All Packed LOL

Thanks for listening!

Cruising with Crohns Again

Cruising Again

Well returned a couple of weeks ago from another cruise.  It was absolutely fabulous and so very relaxing. I actually gained 5 pounds!

Been feeling really good. Crohn's symptoms  are under control and I haven't had a migraine since October 12.  Latest infusion was last Thursday.  They did solumedrol with the infusion again. Only side effect so far is a few hives on my abdomen and insomnia the first few nights.   Had one heck of a time getting the infusion. The infusion nurse has been out sick so it took a bunch of phone calls to get me rescheduled. If I hadn't stayed on top of it I'm sure they would have lost me in the shuffle.

Doc said fatty liver could be from high cholesterol so they're gonna check that.  Will post more info soon.