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chocholic
Veteran Member


Date Joined Apr 2006
Total Posts : 634
   Posted 7/25/2009 6:07 AM (GMT -7)   
So i havent been on here in ages, but right now i feel like i have nowhere else to turn. I began remacaide/infliximab infusions in march of this year. The first infusion changed my life. Like my symptoms where gone, totally gone. I was (and i HATE this word) 'normal'. It continued for all the infusions, no pain, no diarrhea, no sickness. Life was amazing, i had energy again. Things were perfect. Two weeks ago the remaciade seemed to switch off overnight. I had a 3 day migraine. My mother was about to drag me to the hospital to get it checked out, when it finally began to ease off. Since then i've had a total reversal, i'm pretty much back to square one. Frequent liquid stools, absolute urgency, and the pain started again last night. Not bad pain, but pain never the less. I also had another infusion yesterday. It seems to have stopped working. I;m due in to see my GI on the 24th of august.

I think i'm so heartbroken cos i pinned all my hopes on this drug. There WAS no option of it not working. I was diagnosed at 19 and i'm now 23. When i was diagnosed i had disease in my colon and approx 2/3 inches of my ileum. Since then, we have eradicated the crohn's in my colon (wooho!) but the disease in my ileum has extended to approx a foot. This foot of ileum is narrowed. Its about half the width of the rest of my small intestine.

I'm in the UK, so have to go through Primary Care Trusts to get my treatment. They refuse all Humira treatment untill remacaide has been treid and proven not to work. Thing is, if i go onto the humira and that doesnt work, what then? I've tried everything else bar methotrexate and me and my doctor both dont want me on it.

I've researched surgery, but my doctor isnt really up for it. I understand why he is reluctant but i seem to be rapidly running out of options. Maybe i should have surgery and stay on the remacaide in the hopes that by removing the active disease the remacaide can really get hold of the crohn's again. Or maybe this is the best it gets? But i just had the best it gets and i want that back again. I'm trying to get my final year done at uni, i've already missed so much. Ive put back my dissertation cos i'm not ready to do it. It's meant to be due in march. I've bought myself anouther year to do it in.

I think what i want is for you all to look into the future and tell me what to do. I know you can't but maybe you guys can help me to figure out the best option for me. I just want to be me again. I dont expect to be 'normal' but being able to keep up with my uni work would be nice,or even the energy to do things with my mates. Bless them, all we ever do is have movie days usually cos i'm so beat and its near the loo!!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/25/2009 6:14 AM (GMT -7)   
I am so sorry to hear how sick you are. I so understand where you are at, you are sick and tired of being sick and tired. Believe me you came to the right place. I am wondering if a round of Prednisone would not help for now until you can figure out whats next for you. Have you tried either Imuran or 6mp? Those might be some options for you too. I sure hope you can get the doctors to get you feeling better soon, and back to uni.

Big Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

chocholic
Veteran Member


Date Joined Apr 2006
Total Posts : 634
   Posted 7/25/2009 6:29 AM (GMT -7)   
Hiya nanners,

I was on imuran for almost 3 years, it worked nicely to begin with. But slowly it began to wear off. Now its as good as useless. I havent been on 6MP but doctor reckons that it wont work very well anyway cos the imuran doesnt work now. I feel so silly about complaining, i'm not really THAT bad, i can and have coped with worse. I get my treatment for free, most of my friends are brilliant with me. I can even eat popcorn, so long as i'm ok with seeing it pass almost unchanged!! eyes I dont pass blood, i rarely pass mucus. I havent even had my first surgery! I do get some joint problems, but part of that is cos i ride horses, therefore i fall off!!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/25/2009 6:32 AM (GMT -7)   
Well Humira might be a another option then. And sweetie, no falling off horses for you. We have enough problems, don't need to add broken arm or legs to the group:)
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/25/2009 6:34 AM (GMT -7)   
Oh Choc,

Just curious why not Methotrexate? That med has been very successful with some of our members, I have heard many stories much like your Remicade story, about how well it has worked. It also helps the joints too. Just a thought!

Good luck
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

chocholic
Veteran Member


Date Joined Apr 2006
Total Posts : 634
   Posted 7/25/2009 8:05 AM (GMT -7)   
Well, i have been very good, and i havent fallen off in a few years now! I dont like the sound of methotrexate and they told me that they done like giving it to young people. I didnt ask why at the time. Wish i had now!!

britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 7/25/2009 8:31 AM (GMT -7)   
I completely understand what you're going through, as do most of us, I'm sure. I know what it's like to go through all of the options and feeling like there's no hope. But don't give up! I think Nanners may be right about the prednisone. It is very helpful for temporary relief, so maybe give that a shot? Trust me, you will get through this and things will get better. This disease is just so darn unpredictable!
Brittany
 
Currently taking: Humira 40mg/every other week, Imuran 50 mg/day, Zoloft 50 mg/day, vitamins and supplements, Phenergan and Lortab as needed, prednisone tapering down
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


chocholic
Veteran Member


Date Joined Apr 2006
Total Posts : 634
   Posted 7/25/2009 11:06 AM (GMT -7)   
I'm feeling abit more optimistic now. Mind i have spent a bigger part of the afternoon in tears! I'll definatly ask about the pred. Just when i got my figure back as well!! Made it to a UK 10 (USA 6) for the first time in about a decade. Oh well, i'll just have to keep the jeans and promise myself i'll get back into them at another point!! Sometimes i think i have this disease running for cover, then it seems to stick two fingers up at me and it steps up the action. We've never really had a remisson for a prolonged period of time. Gah, i hate this blasted thing!

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 7/26/2009 6:13 AM (GMT -7)   
Wow it always amazes me how different the PCTs are in the UK, mine had me on methotrexate at 15 and now (blatantly because the doctors are in cahoots with the drug companies) they're trying to make everyone go on Humira its now their first treatment the offer I think as its more cost effective as you do it at home, every time I go to my GI I get a sales pitch on it that I've now heard a million times so I'll nod and smile and agree that it sounds amazing and I look forward to trying it when my current options have run out, like you say Humira seems to be the last option so its not one I want to use up unless necessary! The good news is all the drugs that are available in the US make there way over here a little while later so I'm hoping give it time more options will get over here (there are already so much more options than when I was first diagnosed 7 years back)
You say you used to on immuran, it might be worth adding this to the infliximab - studies have shown that an immunosuppressant can boost the effects of the infliximab and make it less likely for you to react to the infusions, the cancer risk is higher this way however you just got to consider if the risk is worth it if its going to help you.
Hope you find a solution to help you feel better soon :-)
 
 

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