Did you have to stop Humira due to side effects?

[suschex]

I am wondering what side effects caused people to stop taking Humira.

I began Humira in November. I reached remission around 12 weeks. Then I had to stop injections due to Strep Throat. During the time off I realized I had some negative effects slowly going away. I had not even realized they had ever started. Now that I am about a month back on the Humira it seems that they are coming back again.

As always, I can't gurantee that any of this is or is not due to the Humira. However, I would love to hear the reasons (other than it not working) people had to or decided to go off Humira.

It would be really, really helpful! :soledance:

 

[David]

Hi Suzanne,

I'm very sorry you haven't received any responses. Here's a free bump to see if anyone might be able to provide you some insight

 

[suschex]

No big deal. Thanks for the bump!

 

[willsmom]

Hi suschex,

I took my son off Humira after 5 months for psychological reasons which eventually manifested into physical in that he would feel ill for days before the injection and then sweat, get nauseous and hyperventilate before the actual shot. He has a kingsize fear of needles now that we're working through.

 

[Pam58]

Hi Suschex,

I went off Humira about 7 weeks ago. The good: my inflammation went down to normal (ESR went from a high of 94 to 18). The bad: about 3 months in I started getting stiffness in my fingers and my knees. I now have thee trigger fingers and stiffness in the other fingers and thumbs. Then I had numbness and tingling on my right leg for about two weeks. Went away. Then about 3 weeks later, had numbness and tingling on my left side from my ankle all the way to my armpit, and my legs sometimes felt as if they were going to give out. Finally I had a stiff neck that would not go away (I have never had a stiff neck for more then a day). I did have tests for drug induced Lupus, and my ANA came out positive. I finally asked my G.I. to go off the Humira and she agreed. Anyway, I haven't had the numbness and tingling since I went off, but the trigger fingers and stiffness remain. It's kind of sad, because Humira was really working for the Crohns and it was a tough choice to go off, but I just felt that Humira may be causing these troubling symptoms and I needed to go off it for at least awhile to see if that is the case.

You mentioned that you had some negative symptoms that went away after you stopped. I'm curious as to what they were (if they were not related to the strep).

 

[suschex]

Pam58-
It has mostly been fatigue and stiffness. The stiffness is the biggest concern. It had been mostly in my feet and ankles. This is hard because I really love to run and when I first wake in the mornings it is difficult to even stand much less walk or run. It eases after a bit but returns if I sit for any amount of time at all. Now, since starting back on injections, it is also in both shoulders. It hurts to raise them even just to close the curtains in the evenings. I am not sure what to think.

The Humira has gotten me to remission quickly and for that I am thankful. I wonder though, could this be fibromyalgia, lupus, arthritis, something else or nothing at all. Oh, I also had terrible back pain the first time on it and it was really intense and debilitating. That hasn't returned this time or at least not yet. I am due another injection tomorrow.

I'm thinking of going in to see my GI and see what he thinks.

 

[Pam58]

suschex,

You just decribed another side effect I had forgotten about. Stiffness in general in my legs. I would walk like Frankenstein when I would stand up, especially after sitting for awhile.

I agree that you should see your G.I. doctor. My G.I. Dr. wanted me to go to a Rheumatologist when I first talked to her about my side effects, so I did. There are specific tests to determine Drug Induced Lupus; not sure about fibromyalgia. It's maddening to get these weird things happening to our bodies after starting a high potent drug, and most Dr.'s don't seem to ask about them or even be aware that they can happen. Please keep us posted on what you find out. I hope you're able to sort everything out.

 

[suschex]

O.K., after hearing that, I am going to go see my GI to discuss these things. There just isn't any other reason for the stiffness and aches that persist.

 

[cajungirl]

Hi Everyone,
I have been on Humira since 2006 and I have several side effects that I've been tolerating, since it has somewhat helped my crohn's. My side effects are generally worse the first few days after my shot. Usually my heart races - even in my sleep and to the point where I feel extremely anxious, headaches, sinusitis, bruise very easily, feeling wired and tired at the same time, restless. Sometimes the side effects are worse than others. I have learned many ways to combat the side effects as best as possible. I take xanax for anxiety and an extra dose just before my shot (helps with racing heart), tylenol for headaches, astelin for nasal congestion, and hot epsom salt baths at night for restless and anxious feelings. Also regular massage therapy helps with stress and CD. If anyone has any questions regarding Humira or CD, I would be happy to help if I can.

So glad I found this forum. Already I feel like I have a million friends just from reading everyone's posts! You are all a great support system!!

 

[David]

Welcome to the forum cajungirl, we're glad to have you. If you want, feel free to share your story in our your story forum sometime so we can get to know you better

 

[suschex]

Hi suschex,

I took my son off Humira after 5 months for psychological reasons which eventually manifested into physical in that he would feel ill for days before the injection and then sweat, get nauseous and hyperventilate before the actual shot. He has a kingsize fear of needles now that we're working through.

I am so sorry your son had to go through such a tough time.

 

[suschex]

Well, stool sample today to rule out any cause other than Crohn's for the symptoms other than the aches, etc. Once that is back the doctor wants me to go off Humira and see if the stiffness and aches go away. He said they could also be due to CD being active. Once we sort that out we will consider starting 6MP as well as a possible steroid bump.

 

[lacibug34]

Hi Everyone, I have an appointment next week to discuss going off Humira. I have the stiffness you guys are talking about. It's hard to even walk for about an hour after I get up in the morning and also if I've been sitting for a while. I get really bad headaches on it also. My biggest concern is the tingling sensations and numbness I have been getting in my arms to my fingertips (worse in my fingers) and legs to my toes (worse in my toes). It is mostly on the left side and sometimes so bad that I can't move the affected area and have to use the other hand to move it! This is really scaring me....my GI is a 6 hr car ride away from me so I only go when necessary but I am going next week to discuss other options.

 

[suschex]

Hi Everyone, I have an appointment next week to discuss going off Humira. I have the stiffness you guys are talking about. It's hard to even walk for about an hour after I get up in the morning and also if I've been sitting for a while. I get really bad headaches on it also. My biggest concern is the tingling sensations and numbness I have been getting in my arms to my fingertips (worse in my fingers) and legs to my toes (worse in my toes). It is mostly on the left side and sometimes so bad that I can't move the affected area and have to use the other hand to move it! This is really scaring me....my GI is a 6 hr car ride away from me so I only go when necessary but I am going next week to discuss other options.

Sounds very similar to my side effects. Glad you a going to see your GI. I am in Texas also. Where are you and your doctor that is 6 hours away? That is a long drive to have to make :-(

 

[lacibug34]

I'm in Midland and my doc is in Austin. There is only one practice with Gastros here in Midland and they really suck... I swear the guy almost killed me, lol, then basically told me he didn't know what to do with me and I should find another doctor, but he's the only one here! I would like to find a good one in Lubbock since it's a lot closer but was recommended this guy and I really like him. It's nice to see another TX person. What part are you in?

 

[suschex]

I'm in Waco. Who is your GI in Austin? My GI here in Waco is good but I have been looking at going to a GI in Dallas, Austin (I have family in Austin) or at Scott and White in Temple. We only have one GI group here in Waco so if I want to see someone else I will have to travel just like you. No fun! Glad you have someone in Austin you like!

 

[lacibug34]

Ugh....no fun at all! It's Dr. Chris Goddell at Austin Gastroenterology, I forgot her name, but I really like his PA too. They have a lot of locations so there may be one that's not too bad for you.

http://austingastro.com/