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Having a REAL tough time

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Crohn's Disease
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Posted 7/13/2009 1:27 AM (GMT 0)
First I have to say I love this forum and have gotten many good ideas from everyone on here.  What I have going seems to be a common problem for alot of people but I feel at my wits end.

I receive the max amount of Remicade every six weeks, life is great for about 3 1/2 weeks and then I start with the severe joint and muscle pain.  Now if that is not enough 2 weeks after my last dose my psoriasis flared so bad that about 80% of my body is covered and they are burning and itching me out of my mind!!!! And as of Thursday my Chrons decided to put in an appearance with a full blown flare up.  I am a disaster and just need to blow off some steam to someone besides my husband.

 The general feeling of all specialists involved is to go off the Remicade and on to Humaria.  Is there a wait time to go off the Remicade and start the Humaria.  Has anyone had better luck with the Humaria.  What does it work best on..the guts, the joints or the skin (all 3 would be GREAT!!!)I believe they would also keep me on the methotrexate. 

Sorry to be such a downer but I am way down there and having a hard time getting back up again...I don't know how one body can cause you so very much pain...Any advice would be greatly appreciated

 

Posted 7/13/2009 1:34 AM (GMT 0)
I hear you. I am having a tough time too, just had to call my boss on a sunday night and request two weeks unpaid medical leave of absence. Cramping, fatigue, loss of appetite, it's all hitting me too. I am supposed to start Cimzia, and I hope that will take place soon. It's not an infusion, but subcotoneous, so I inject myself, which means I pick it up from the pharmacy, which means they have to special order it and I have no idea how long that will take.

You are not alone, but there is a time when this will get better. I really think it will.

Much love and blessings to you. I pray we both get through this. I stopped responding to Remicade as well, and now it's on to Cimzia. What a world...
Posted 7/13/2009 1:35 AM (GMT 0)
You have come to the right place to blow off steam. It's bad enough when you are flaring, but having other complications can be very overwhelming. I 'm not on Remicade but I'm sure someone will be along to share their experience. Good luck and I hope you are feeling better soon.

Elizabeth
Posted 7/13/2009 2:41 AM (GMT 0)
baaadgut:(,

you are not alone. I woke up crying this morning(first time since Nov.), fed up and frustrated. I;ve been on remicade for 1 year and 4 months. like you was going great cd was under control was able to eat a little more then usual. then in Nov i started the with joint pains. It has gotten so bad with high fevers, my body has become deformed (knees,wrest) unable to walk, open a bottle. Always tired but never able to sleep due to the pain. always taking pain pills that hardly even work. Have been unable to work for 2 years now. So the doc took me off remicade, there is no wait time to start humira, just waiting for the nurse to call to arrange an appointment to come by and teach me how to use it. I'm also back in Imuran (suppose to help with the arthritis) doc doesn't want me on mtx for the fact I want a family in the next few years if my body will allow me!!

I'm frustrated and in pain, I'm with you.. I feel horrible for my fiance to always have to listen to me (luck for me he understands and listens.Does what he can)

 

Posted 7/13/2009 4:16 AM (GMT 0)

baaadgut:( said...
The general feeling of all specialists involved is to go off the Remicade and on to Humaria. Is there a wait time to go off the Remicade and start the Humaria. Has anyone had better luck with the Humaria. What does it work best on..the guts, the joints or the skin (all 3 would be GREAT!!!)I believe they would also keep me on the methotrexate.

I ended up having an allergic reaction to remicade. I'm on humira now. It worked on my gut pain somewhere between 2 and 3 months. I didn't have much in the way of joint pain, however my jaw doesn't hurt anymore (TMJ), and I'm guessing the humira might be responsible. I had a small amount of eczema on one hand when I started humira. It didn't go away. However, it started healing about a month ago, and is almost back to normal skin. It could be because of my diet (SCD), as my itchy skin problems went away when I started eating that way.

I hope you get to feeling better soon!
Posted 7/13/2009 6:48 AM (GMT 0)
Wow, you are sure going through a rough patch right now. So sorry.

I just want you to know that I was on Remicade with only moderate success and then I developed a reaction to the drug. I was taken off of it. I was super sick and just got sicker and sicker. Finally I was able to go on Humira and it was a true life saver for me. It took about 3 or 4 months to work completely, but when it did, all my symptoms went away. When I first started they didn't do the loading doses, so maybe that is why it took a bit to kick in. Anyway, it was wonderful and my Crohn's symptoms and arthritis pain went away!!!! So, for me, I had much better results with Humira over Remicade.

Feel better soon.
Posted 7/13/2009 1:04 PM (GMT 0)
I have been on pretty much every drug on the market for crohns/colitis. Before I had my ileostomy surgery I was on humira, colazide, methotrexate, prednisone, lexapro, and still was sick as anything which led me to emergency ileostomy surgery but now Im having joint pain and eye problems so they seem to think those drugs were keeping those problems at bay and now I am no longer on any meds those probs are rearing their ugly heads to give me a further hard time, so i am off to see a rhuemy tomorrow and getting my rectum removed soon as well to make mine a permanent ileostomy. I was on remicade as well before humira for almost 2 years but it stopped working on me so thats when our last option were the meds I mentioned earlier. So many have good results with humira and I do think its worth a shot for you, at least I know every option was exhausted for me and I am happy to finally be free of gut pain, the other pains are nothing compared to how I used to be. Take care and good luck, let us know how u go and what u decide to do. You are in my thoughts
Posted 7/13/2009 1:21 PM (GMT 0)
I don't know anything about either of the meds, just wanted to send healing thoughts and prayers your way, that the Humira does do the trick and get you feeling better soon.

Gentle Hugs,
Gail*Nanners*
Posted 7/15/2009 1:32 AM (GMT 0)
A big Thank you for all the support and advice. I go see my GI tommorrow and am hoping we can get started on the Hunaria soon. I would like to be able to enjoy some of the summer with my kids. Thanks again!!! Hopefully the next time I write it will be with good news cause like everyone else I could sure use some.
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