Humira, TB, Pneumonia, HELP!

[Questions]

Hi again! I haven't been here for a while so just some background info:
Diagnosed with Crohn's since I was 17, now 24
Diagnosed with AVN of hip - waiting for surgery
Currently taking Asacol
Have tried other medications including Humira


I got a new GI who I will be seeing on Friday. I feel like I have tried everything. I thought Humira would be my miracle but shortly after I started it a few years ago, I ended up fighting for my life due to pneumonia. I apparently also "mysteriously" contracted TB. Does this mean that Humira or similar medications are completely out of the question now? I hear good things about Remicade as well but its similar to Humira in how it works. Oh and I also have avascular necrosis of my hip due to long term steroid use so I will be getting a total hip replacement in a few months. I'm just SO fed up with everything at this point. I WANT something that works so I can be in remission already. I'm almost 5'9" and only weigh about 110lbs... I look and feel disgusting. I just want to be HEALTHY and put on some weight so my family can stop worrying about me and I can be happy. Please if anyone has any suggestions, I'd REALLY appreciate it. =/

 

[David]

Wow, I'm sorry to hear about everything you're going through. That's so rough

Did they not test you for TB before putting you on Humira?

Have they treated you for the TB yet? If so, how long ago did the treatment stop or is it still ongoing? And when they treated you for the TB, did your Crohn's symptoms improve?

 

[Questions]

Thanks! It's been a few years since the pneumonia and hospital stay. All of that happened about 3 years ago. I THINK I was tested but I honestly don't even remember that anymore. I believe I was and I a

 

[Questions]

Thanks! It's been a few years since the pneumonia and hospital stay. All of that happened about 3 years ago. I THINK I was tested but I honestly don't even remember that anymore. I believe I was and I somehow contracted TB after starting humira. Due to that I got pneumonia. And I wouldn't say my crohns symptoms improved. I was in the hospital for almost 3 months, 1 of those in an induced coma. I just feel like I'm at the end of the road and there are no options left to help me. Can I take humira again now after all that happened before? Even though I have been treated for TB and am good now would it be smart to try humira or remicade or a similar medication now? My last colonoscopy and endoscopy, I was told that the crohns is active throughout my GI yet she didn't change my medication or anything... Still just taking asacol which I don't think is helping. That's the main reason for the new GI. I'm just looking for any information about something that might possibly help a guy in my situation.

 

[David]

It's not my place to say whether Remicade or Humira would be doable for you. With the TB, I'd be a little leary but I'm certainly no expert there.

You may want to check out this clinical trial.

 

[Too Many Bum Steers]

I'm by no means an expert, but I am responding to your desperation as any human with feelings would. Even though I have had good results with fasting, I'd never suggest it for you since you're so thin and weakened already. I do know that doctors have the ability to give you NPO/TPN though, but it's usually only used when they want to avoid surgery as far as I know. Anyway, it might be good to ask a few questions about it, at least to find out if it's an option, or what your options are right now.

There's a popular story about NPO and the social experience of it here: http://www.esquire.com/features/Crohn's-disease-diet-0909


I can't say about drugs, but I can say that folic acid and fish oil supplements, with tiny amounts of aspirin seem to help me a lot. Also, I've been taking 100 mg of DHEA daily as an experiment, and it seems to help, even if I purposely eat a reactive food (to test)... I can feel the pain, but it's more "distant" and I have to press my belly to feel the pain. There's a study about that.

http://www.ncbi.nlm.nih.gov/pubmed/12562454

The thread on which foods make you react the most in these forums is incredibly helpful to me. Although, there's a certain amount of randomness in my life about when my body will react, having some guidelines really reduces the events.

http://www.crohnsforum.com/showthread.php?t=17707

This active disease state though... it's so hard to stop it. There are inflammatory and free radical load factors that few people understand fully. You can take SOD, you can buy it as a supplement, but maybe your body won't absorb it, or isn't what it needs. Ditto for the Alpha-Lipoic Acid + L-Carnitine Antioxidant combination (Juvenon), though that's more to the point because it goes directly to mitochondria antioxidants. Or is it antihistamine activity setting off the cascade? It's too confusing.

I try to keep my bases covered with OTC drugs, like I used to when I thought this was a migraine issue.

1. I keep an antihistamine going, usually Benadryl
2. I keep the Juvenon formula going (even if I don't pay for official Juvenon, the principle is a good one)
3. I keep SOD going if there's a flare of pain
4. I never miss a fish oil dose
5. I take bufferin (I'll go online to buy it if I can't find it)
6. I take CoQ10 because it seems to help as well
7. I only take B12 when it makes a difference I can feel (about 1 day a week 5mg), but I keep it up, but every day I take a multivitamin and extra folic acid (work up to that, folic acid can knock you for a loop)

My family has been I don't know... "unconsciously" fighting the genetic Crohn's for generations. We have traditions like eating bananas and making bone broth and we never thought it was weird or different. Not until I moved out did I get "sick." Now that I am sick, it's much harder to get and keep well. If anything I do helps you, then I'm glad, but you're a different person and I hope you find what you need to be well, even if it's different from what I do.