Boy, did I ever make a big mistake.

Well, I sure pulled a good one yesterday. I went for my Remicade infusion yesterday. I have to be given pre-meds to ward off an reaction because I reacted badly 4 yrs ago to it. So, I ask my nurse to cut my IV Benadryl to 25mg instead of the usual 50mg. She said sure she knows I have a very difficult time waking up with the 50mg. I have to drive 30 miles home and have fallen asleep driving. Yes, thats scarey. I started having some chest tightness, but decided since we are level orange on the air qualitythats was probably what was going on. By the time I gor home, I was sick puppy. I was running 101.3 temp, felt like every muscle and joint was aching. My shirt was soaked with sweat and I don't think I had a dry hair on my head. Truly felt like the flu. Got ahold of my dr right when they were closing and I fessed up to my stunt, he said to take tylenol of course for the fever and get on 50mg of Benadryl because of the reaction.

Susie! You need to find someone to take you to your appointments or take the bus. That is scary. I wont drive after 1 over the counter benadryl because of what it does to me. Yikes.

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26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.

Wow I am sorry what you went through and glad you are safe, hope your feeling better today. When ever I have an outpatient treatment even epidurals shots they require a driver before I can go home. I have been told Benadryl is a sleeping med, at my last MRI they told me to take some and I did not. Do you mind me asking what a Remicade infusion is?
Cloe

Hi Cloe, Remicade is one of the newer drugs used for Crohns Disease, Ulcerative Colitis, R/A and some other auto-immune diseases. The drug is so potent that it can only be given by IV. I have a port in my chest because my veins got blown early into treatment. In crohns our TNF's attack our bodies and destroy tissue. The Remicade blocks this from happening, will it cure crohns, no, there is no cure. I am unable to take steroids which is still used even tho its a very bad drug long term. My GI put me on Remicade and Imuran as first line treatment. Its a dangerous drug to say the least, it had terrrible side effects. A few people died from it when it was first approved. My biggest concern is getting cancer, it can cause lymphoma (?) several cases have been reported. It compromises your immune system which means more the potential for serious infections, you don't heal as fast as a normal person, really its a bad drug in many ways. But, it can also be an excellent drug as well, many steroid dependant people have been able to get off the steroids and manage their disease with Remicade and Imuran. For some like me it has helped. I am on it a second time for a fistula that came out thru my stomach. Previously I was on it 3 1/2 yrs.

I had an emergency resection done out of the country. They basicaly patched me up enough to get me on a plane back home to the states. After surgery things went down hill reapdily, by the time I found my current gi I was very ill to say the least. I have many health issues and many issues with drugs that I cannot take. My dr has never given up on me or ever been afraid of treating me. He see's me once a month and has done this since Oct 30, 2002. I had othe gi's that looked me in the face and said I cannot help you end of story.

I looked at it this way. Its a crap shoot either way I went. so why not try it and see if it helps. Its currently the best treatment for closing and healing fistulas.

Hugs to all, Susie

I had the same reactions during my infusions...hives, sweating, extremely high pulse, high bp, chest tightness, tongue swelling....insane. I was getting 60mg of pred, solumed before the remicade went on, benadryl, zantac, zyrtec, tylenol....nothing. I had serum sickness 4 times, happening from 6 days out to 3 days out. The first time was the worst, I could not move a single joint and was on the couch, frozen for 2 weeks. I have since stopped Remicade because of the ever-increasing, very scary reactions, and am now on Humira. I have not had a reaction yet (knock on wood, shot is due tomorow!!!!!!!) The approval process was hell, but to go from what Remicade did to nothing (still premedicating with 40mg pred, benadryl, zantac, zyrtec, tylenol for now), it was all worth it. Perhaps it's something you could look into? I swear, every person I had in that infusion room with me, every time, had SOME type of reaction to it, and they always got worse. It's a dangerous drug.

I wish you all the luck in the world with this!!!!

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Shannon
Asthma (diagnosed at 12)
Fibromyalgia (diagnosed 9/01)
Crohn's Disease/Colitis (diagnosed 12/02)
Diverticulitis (diagnosed 6/07)
Chronic pelvic pain/endometriosis, leading to hysterectomy (9/07)
Torn rotator cuff/labrum (repair 11/20/07)
Bladder sling (8/06), cholystectomy (2/06), tubal ligation (2/06), failed ablation (3/07)
Poisitve blood test for wheat allergy, (11/07); Positive capsule endocopy showing Celiac disease (6/30/08).
Also allergic to egg white protien.
Taking Asacol, Prednisone, Humira, NuLev, HCTZ, Lisinopril, Cymbalta, Prevacid, Zantac, Ambien CR, Lomotil, Robaxan, Plaquinil,  Frova, Questran powder/Carafate suspension, pain meds and LOTS OF VITAMINS AND SUPPLEMENTS!

Susie,
So sorry to hear about what happened. But I'm glad you're recovering. Sometimes I feel like my life is a row of dominoes with each one leading to new health issues. I know that stress just keeps piling things on us. And you're right - sometimes it's just a crap shoot, and we gotta do what we gotta do! LOL

PaLady

Thank you Susie for the answers that I sort of understand, LOL. Wow whats up with all these good people suffering from chronic pain?
I have always blamed my disability on karma searching for what I had done to cause it. I realize now that this treachery hit on all walks of life with no forgiveness. I hope you consider taking a driver with you for your next treatment.
Cloe