Side effects

[nogutsnoglory]

What side effects did you or are you experiencing with humira? I got off because I had too many.

 

[suschex]

Severe lower back pain, stiffness in ankles, feet, neck and shoulders. I just spoke with my GI yesterday and it looks like I may go off. Need to make sure it is due to the Humira and not actual Crohn's activity since both can cause these issues. Next step would be to try 6MP or no drugs at all and see what happens. Not sure what to think right now.

What were the side effects that caused you to stop the Humira? What will be your new course of treatment?

Glad you posted!

 

[Fayne]

My GI offered me the "No Drug" alternative and I fell for it. Things got a lot worse for me after no medication for 2-3 months. I wouldn't recommend this option for anyone.

 

[suschex]

My GI offered me the "No Drug" alternative and I fell for it. Things got a lot worse for me after no medication for 2-3 months. I wouldn't recommend this option for anyone.

That is what I thought as well. Not sure why he would even mention that after telling me I would have to be on maint. meds for the rest of my life.

I don't think he believes that I could be flaring. He said that since on Jan 13 a colonoscopy showed all was clear of Crohn's activity, it wouldn't make sene that I am now flaring. However, I have the symptoms that are telling me otherwise. Along with side effects mentioned above. So now, he is doing a stool sample and then will see what to do.

It is rather frustrating.

 

[nogutsnoglory]

I don't want to go on another biologic or immunosuppressant but do want some maintenance drug.

With Humira I had hives, chest tightness, extreme dizziness and twitching.

 

[suschex]

I hope you find the right drug! That seems to be the really hard part of this disease sometimes!

 

[Spooky1]

i've done nothing but cough since starting humira, my throat swelled up for a few days after injecting this. i'm off it now but still nasty cough

 

[nogutsnoglory]

Spooky it takes about two weeks to fully leave the system.

 

[lacibug34]

I am having a lot of swelling (not sure if that is from the Humira), stiffness and pain especially in my feet, tingling sensations in my arms and legs down to my feet and hands, headaches, and elevated liver numbers. The tingling and numbness is really bad and sometimes gets bad enough that I cannot move the affected hand or foot. My gut does feel better on it but only a little and the D is still at least 6 or 7 times a day. I am really considering going off it. It seems like a pretty risky drug to continue when it's not exactly a miracle for me, ya know? The only thing is I'm not sure how much of my D is from the disease and how much is from my missing bowels, lol.

I obtained remission with Remicaide and 6mp and went off both when I got pregnant with my first child. I was able to stay drug free and healthy for 6 years....however, those 6 years ended with me in the hospital for 4 months straight and losing about a foot of my small intestines, my illeocecal valve, and about 8 inches of colon.... I mean, the 6 years are great but not sure that the outcome was worth the risk! I tried the Remicade combo after the surgery but didn't respond at all. When I switched to Humira I did notice improvement but it's been 8 months now and it doesn't seem to be drastic.

I would like to try something like LDN and the Specific Carbohydrate Diet or something.... I've tried diets in the past and they are too overwhelming for me to stick to. Maybe if I could work with a Dietitian or something?? I don't know..... I'm just ready for a change.... The surgery was 2 years ago and nothing seems to be getting better.

Sorry to ramble on about my stuff.... I know the question was about side effects....

 

[Miss Underestimated]

With 8 months in, I think you'd know if it was really helping.