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When to give up? What else can I try?

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Crohn's Disease
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Posted 8/31/2010 5:14 PM (GMT 0)
I think I put all my eggs in one basket.  I guess I just thought once I went on Humira everything would magically get better.  It hasn't and I've even gotten worse.  I've been on it for around 2 months now.  The pain is worse, the symptoms are worse, the bathroom stuff, vomiting in the morning (sometime vomiting blood since many times theres really nothing in me to even throw up!) the achiness the extreme fatigue.

All I want to do is be able to work and have a decently normal life again, and I can barely do a part time job thats only a few hours...I come home exhausted.  I've also been having fevers of around 102, 101, etc.  The doc thinks it could be mono on top of the crohns which makes sense since im so tired and achey and thats how it was when i was first diagnosed...

I just don't know what to do.  I haven't have a normal bm in forever....that's all i freaking want!  And sometimes theres that ridiculous urgency which i have always been able to control but the other day  i was driving to work and then i had to turn around because i thought i was going to freaking crap my pants!  and i was a few minutes late to work and i mean 2 or 3 minutes isnt a big deal but if i had a teaching job (which is what im looking for before i got too sick) 2 or 3 minutes late would be a problem because u gotta get there before the kids!

im so tired and i want to be positive but basically its been awful since march...there's been a few okay moments but only because from when i was on steroids.  but i just feel its not healthy to constantly go on and off steroids.  (Im not on them now, my dr doesnt want to put me on them)

i just cant live like this.  my crohns used to be so so manageable, i dont know what happened!  yeah it sucked sometimes, but it wasnt such a huge presence in my life...it wasnt to the point where im staying home in bed everyday, havent seen my friends in weeks, cant work. 

and the freaking guilt!  i know im sick, i need to put my health first blablabla but i feel so darn guilty when i need to not work.  i work for small places where theres no one else to cover you so basically youre screwing over someone. 

i just dont know what else to try... my doc gave me 2 extra humira pens hoping if i did a shot every week for a month instead of every other week that maybe it will help.  so tomorrow i'll take the first extra one, we'll see how it goes.  (and last week out of nowhere i had major anxiety and couldn't even give myself the injection, i ended up misfiring, luckily i had a spare from my dr and i needed my stepdad to do it the 2nd time...what is with me? ive done it already! i should be able to do it!)

do people take something on top of the humira to help? can i try something else instead?  or in addition to?  is this really going to be my "life?" im just going to be a person in a bed with no life and no future?  what can i do to make everything better?

Posted 8/31/2010 7:45 PM (GMT 0)
Sara, I guess you mean give up on the Humira? I think you've waited long enough, but I'm no expert. It does,t seem to be giving you any benefit at all, so unless someone told you to expect 2 months of misery before seeing any positive result, I'd say throw in the towel on this drug and try something else. I have no idea what that might be!

I'm sorry you're in such a bad flare and I hope you feel better soon. Can you go on TPN?
Posted 8/31/2010 7:55 PM (GMT 0)
I am so sorry to hear about your struggles, it sucks not to feel good. When I started humira they said it takes about 4 months to kick in completely, now it took and is still taking longer than that for me. I just started the shot a week as well and it seems to be helping but I am ready for a normal BM as well. I do not seem to be nearly as bad as you though (sorry) but I just really have rina and stomach pains.

I started taking Remicade and it worked wonders for me. I felt so good on it, I gained weight, had normal BM and felt on top of the world until I developed anitbodies that worked against my system. And I couldn't use it any more. I still am mad about that.

I have tried humira with other meds like Lialda, Sulfasalizine and they also helped but my feet would swell with them so I had to quit taking them as well.

My body is rejecting everything that seems to work and it is making me MAD devil

Well good luck to you, I hope you feel better soon!!!

Tonya in Missouri

Posted 9/1/2010 9:49 AM (GMT 0)
Sara you sure are having a tough time, I tried many different meds but found none of them helped in the long term. I was like you several months back, but I am now on no meds because I found changing my diet has reduced my symptoms and need for the loo every twenty minutes. Brought a book on ebay which helps you find the right diet to stop your symptoms from getting worse. Its called a guide to diagnosing food sensitivity.

Jen
Posted 9/1/2010 6:24 PM (GMT 0)
I have been on Humira for 5 months and it is not working either.

The normal thought process is to say: maybe I need Remicade or Cymzia, but realize that these are all anti-TNF blockers. If your problem is inflammation then trying these others may help...but !!...my GI told me that I may have enough scar tissue in my strictures that another anti-TNF drug may not help either.

So now I got to go for yet another colonoscopy, if it is inflammed I am going with Cymzia since Remicade is so complicated and once you get off Remicade you run the risk if you go back on of anaphylactic shock.

In the case of Cymzia I will give it another 6 months, and yes, I may go with Remicade as a last resort.
Posted 9/1/2010 8:22 PM (GMT 0)
I am sorry you are going through such a hard time :-/

What other meds have you taken? It's common to take more than one drug for Crohn's, so if you are only on Humira that isn't that much by some people's standards: some folks are on a 5-ASA (asacol, pentasa, etc.), immunesuppressant (6MP, Imuran) and biologic (Remicade, Humira, etc.) all at once. I'd say it's most common to combine an immunesuppressant and a biologic, though. But the drawback with 6MP/Imuran is that they take 3 months to even begin working. Not ideal for getting out of a flare in a hurry :-/

You could consider enteral nutrition. There should be a thread about it on page 2 by Writer.

If uncontrollable diarrhoea is your main symptom, Loperamide or Questran can reduce the number of daily BMs. Or even a low dose of an old-style antidepressant, such as clomipramine.

The fevers could easily be a part of active disease. I have had bouts of fevers for the past few years, although nothing at all for the last few months - going on 6MP has apparently knocked the fevers cold on the head. Paracetamol (tylenol) can help lower a temperature. (Ibuprofen is better in my experience, but it's also potentially hazardous to IBD sufferers unfortunately.)

Finally, if worse comes to worse, I would seriously consider a hospital stay just to recuperate, if nothing else. (That's assuming that's an option of course.)

Good luck :-/
Posted 9/1/2010 10:40 PM (GMT 0)
Humira doesn't work for everyone, but I don't know how long you are supposed to give it. Have you tried azathioprine (Imuran)?
Posted 9/2/2010 1:28 AM (GMT 0)
I feel as I'm in the same boat, although I haven't given Humira or Cimzia a shot just yet. I have built up antibodies to Remicade and it really doesn't affect me anymore. I've had Crohns the past 13 years and have always been on the harshest of the drugs. Done surgery, didn't work, imuran doesn't work, pentasa, asacol, etc.

I'm on prednizone right now but I want off ASAP, I freakin hate being on prednizone, I hate feeling so weak!

It's gotten to the point where it's very bad for me I'm struggling to even finish school. I wanted to do an honors thesis before I graduated and there's no way in hell I can do that right now.

I desperately want to try enteral nutrition but the insurance company is running me through the works.

I'm having these questions go through my mind too. I hate being dependent on other people to live my life, I hate being sick all the time, I hate feeling like I can't do anything, I hate blowing off my friends that want to hang out with me, living like a hermit, not being able to have a relationship. I just want to be healthy!!!!! I seriously just want 5-10 years of feeling awesome. I don't need to live till I'm 60. I just want 5-10 freakin years of being able to do what I want to do. Why does life have to be so darn unfair!?

Post Edited (Poppysocks) : 9/1/2010 7:33:31 PM (GMT-6)

Posted 9/2/2010 9:49 PM (GMT 0)
My son is on LDN. It works. no side effects, no more spasms, no pain, no blood, no nausea, it really is a miraculous drug. He was so sick he had to be carried up stairs. We tried everything and he didn't want to live like that anymore, so I searched for something better and found it. Don't give up, just educate yourself. What could you possibly have to lose.
Posted 9/2/2010 10:23 PM (GMT 0)
Oh yea, I've tried LDN also.
Posted 9/3/2010 9:44 PM (GMT 0)
What is LDN? (Well I googled it but I still dont think I know what it actually is....and why don't doctors ever mention it?)

I hear you poppysocks...5-10 years of feeling awesome would be well...awesome! I'm kinda kicking myself right now for being down on myself the past few months for not having a better job, better career, boyfriend, etc. Now I just want my crappy, no boyfriend, part-time job life back if it means at least being healthy enough to live it!

I wonder if Imuran would work for me. Because I feel like when I was on the higher dosage of 6-mp my crohns wasnt so horrible. I would have flareups here and there but I was okay for the most part. It only started sucking when I had to go on the lower dosages because of the liver issues. So if it's in the same category maybe it will work? I dont know...

I know when I spoke with the Humira guy he said when they did a study people were on Humira for 4 months, but he admitted most people who are successful on it feel a difference within the first month or 2... And I've been on it for almost 2 months now, plus the last 2 injections have been weekly instead of every other...I'm giving it another 2 weeks so I'll have a month of weekly injections, and then I'm going to try to make a decision on where to go next...
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