Starting Remicade Next Week

I read the posts daily but have only written in a couple of times.

Mainly, because I needed to vent.

I am tapering off Pred and am now at 20 mg and it is not going well. I do not want to stay on this drug so I'm living with the symptoms for now and as long as they stay pretty much where they are at, I'm going to just deal with them so I can continue getting off Pred

I was finally approved for Remicade and have my first treatment lined up for next Tues

In all honesty, I am looking forward to it. I HATE Pred and all its side effects but I have to admit that I understand the love/hate relationship with it. I was on my last leg when my GI prescribed the Pred and in less than 3 days, I had a 100% improvement in symptoms. I was able to reclaim my life and for the first time in months, able to wear my own underwear instead of Depends. That in itself was worth the Pred.

However, I want off it so badly that I'm willing to live with some of the old symptoms if it will get me off the evil drug.

I am so hoping that Remicade works for me. The last 4 years have just been one thing after another and this year was the worst of all. I cannot believe what all Crohn's/UC can do to you. I have what my doc is calling a hybrid of the 2 since I have tested positive for both but my small intestine is clean, at least for now.

I now am positive for 3 autoimmune disorders - lupus anticoagulant disorder that almost killed me in Feb of this year - had double pulmonary embolisms and a pulmonary infarction because of the bloodclotting disorder and am now on coumadin for life since that was my 2nd bout with blood clots less than 8 months apart - UC and Crohn's - Whoopee for me

I've read all the literature on Remicade and if it improves the quality of my life and it shaves a few years off, I'm ok with that. I should have died in Feb and I made my peace then. Life is tenuous at best and I'm hoping for more good days than bad. I would call that success.

I have an 11 year daughter who thinks, I'm going to drop dead any day and she doesn't remember me ever being completely healthy. I just tell her, I'm not dying tomorrow or the next but everyone dies at some point and no one knows when that is going to be so enjoy your life while you can as tomorrow may not come.

I know what I want sung and said at my funeral - I know where I want to be buried - sounds morbid but it actually gives me peace of mind knowing that my husband is well aware of my wishes.

I've been reading the posts about would you give up Crohn's or not or something to that effect.

I do believe that it has made me a more empathetic person and it has definitely helped my daughter develop empathy for people but do I wish that I could give this up and never have had it. You're d..mn straight. I absolutely HATE what this illness has done to me. I hate the uncertainty of not knowing. I hate the limitations that it has placed on me.

My husband calls me the strongest person that he knows but even strong people have moments of weakness.

I have for months soiled myself on my way to work because I can't make it - I get to work, sneak in to the bathroom and proceed to clean myself up. I've soiled myself in so many places and on some many occasions that I can't even remember them all now but I didn't let it make me housebound. I found a way to overcome it by wearing Depends and for the most part, it contained the problem with some exceptions.

I have gone to work feeling so bad that I could barely hold my head up and the only times that I don't are when I physically can't hoist myself out of bed anymore. When I'm sick, I go to bed and I want to be left alone. I want to experience the pain, the nausea and the total nightmare by myself with my cat snuggled up beside me.

Then I feel better.

I've worked since I was 16 and now I'm 44 - I never thought I'd see myself in this shape - I was on short-term disability at the beginning of this year due to the embolisms and that is the most time I've ever not worked in my life, even after having my daughter.

I want to contribute to my family; to my company and I feel cheated. I have a type A personality and I am a self-acknowledged control freak. For someone who has always called the shots, the most difficult part of this Disease is having to relinquish control. It's very hard for me to do, so if this has taught me anything beyond empathy, it has been that I cannot do all things by myself and I do need to delegate.

If I could get rid of the disease and go back to being the control freak that I was, I would do it in a NY minute.

Thank you all for letting me run on and on

It does sometimes help to get out of your system.

I'll keep my fingers crossed Remicade works well for you. I'm just wrapping up a run of prednisone and can hardly wait 7 more days to be off it. Such an evil drug, but it does help.

I'm sorry too that you are having a tough time. I hope you feel better soon, and vent when you need to. It definitely helps, and I can relate to much of what you've said.

Take care!

Thanks everyone - looks like I'm going to move back up to 30mg of Pred - all symptoms are back on 20mg - hopefully, it will get me thru the holidays - I really appreciate all who responded who have experience with Remicade and how they tapered - I was determined that I was going to come off this stuff no matter what till I read Stef's post - this morning I made the decision to move it up 5mg so that I would be taking 25mg - well, I've waited to late - I do mean ALL symptoms are back so starting in the morning, I'll be back at 30mg - I didn't have many problems on it - hope everyone has a Merry Christmas and Happy New Year - I'll let you know how my first infusion goes next week.

Java, I've read about all the different drugs and you're right, the Humira might work better for me but I'm going to have to fail Remicade first - my 2 choices were Remicade and Imuran - I chose Remicade - thankfully, I have wonderful insurance but everything does have to be approved and I had to get my HR dept involved in the Remicade before I could get it approved - so we'll go from here

Hi bamagrl,
I have an 11 year ol daughter too, an 8 yearnold girl and this definitely sucks. I have uc and they tell me I don't have crohns, but I am not so sure. My GI wants me to get an operation, and I am ready, except for this nagging suspicion it's crohns. Do you mind telling me the symptoms you had that led to that diagnosis. I am aso having rapid heart rate it seems when I exert even like an explosion on the toilet. I also had iv's in sept from a two nite stay, and I still have hard nips in my vein, which I don't understand. I think my kids think I am going to keel any day. I had a barium upper GI that was clear, but I was on 6 mp at the time and Remicade. Anyway thanks if you can help.

Allwell

Sorry, I wasn't able to respond before now - I believe that the hardness in your vein is from Phlebitis - I've had Phlebitis twice now since I've had UC - the first time was in my leg and it was the first thing that happened after I was diagnosed with UC - according to my doctor, the hardness and pain can actually linger for up to 6 months - the 2nd time was this past Feb when the hospital blew the vein in my arm where the IV was while they were doing a blood transfusion and I developed Phlebitis there - it created a very hard area that hurt - there really is nothing that you can do about it - your body will heal itself on that one -

I was diagnosed in Jan '08 with left-sided UC but not all my symptoms were common for UC but my GI at the time said they weren't related to the UC and I was treated for them separately

However, the symptoms are fairly common for Crohn's - I go thru bouts of vomiting for days on end and then it will stop for months before it starts back - very uncommon in UC but common in Crohn's

I have a gastric ulcer at the base of my stomach where it dumps into your small intestine - I had an upper GI done for that and am still on Prilosec to reduce stomach acid - my GI at the time said that it had nothing to do with the UC but my regular GP has always wondered if it was related - I believe it is

I've had Pancreatis, Kidney Stones, Phlebitis twice, Pulmonary Embolisms and Infarction, DVT in my leg, developed a bloodclotting disorder, anal abcess and tears that had to be surgically repaired - I have perianal tags that I always thought were hemroids - my rectal surgeon is the one who told me what they were and that it was very common for Crohn's but again not for UC - he is the one who said that he did not believe that I had UC but that I had Crohn's - my new GI, who I absolutely love, agreed with him but because I do not have anything in my small intestines, as of yet, my official diagnosis is Chronic Universal UC - if I ever develop anything outside of my large intestine, then the diagnosis will officially change to Crohn's - that is why she considers it a hybrid of the 2 - I have a huge number of symptoms that are more Crohn's based but my intestines show what they consider to be UC - inflammation is unbroken and encompasses my entire large intestine

Those were my symptoms and after my new GI told me what she did, it all made sense - the problems that I had that just didn't seem to fit with UC did with Crohn's but it took a 2nd GI and a rectal surgeon to figure it out

Good luck with whatever choice you make - I totally understand what it's like to have young children who keep looking at you like you've got one leg in the grave and the other on a banana peel

Hi bamagrl. I hope Remicade works so well for you that you get back to your old control freak self!

thanks bamagrl for the response, I just had two docs look at me an said I don't have tags, just hemis which I think are from this flare. Something looks like a tag to me, but I think it's just scar tissue from giving birth, I tore. I hope the Remicade works, let us know