Possible Humira Side Effect - Extreme Fatigue After 4 Years of Humira

[Mom of 19yo]

My daughter is a 20 year old out of state college student at Chapel Hill. It sure makes things worse that we live in Florida and she is at college out of state but it was her dream school and she made it there...she has been diagnosed with moderate to severe Crohn's since she was 16 and had surgery at 16yo. (ileal bowel resection). She has been on humira now for 4 years and it has seemed to be effective for her EXCEPT within the last 6 months she is so exhausted, not just school work exhausted but her body is just tired. She can sleep for 1 0 hours wake up for 2 and then sleep again for 4. this is very debilitating now for her and she is miserable. She also has developed pains in her knees and ankles which is a new finding. She is waiting for an appointment with the rheumatogist and is just so unhappy with her body. Has anybody experienced lethargy with Humira after being on it for an extended period of time (4years)! To top all this off she is planning on traveling abroad to Barcelona in January for 4 months. She does not want to sleep her semester away in Spain. Any suggestions?

 

[David]

Welcome to the community. I'm so sorry to hear about your daughter

At any point has she had her vitamin B12 level tested? If so, when and what was the specific level? B12 deficiency, especially in Crohnies with resection of the terminal ileum is VERY common and the most common symptom is exhaustion.

 

[PsychoJane]

Hi!
Humira, on the long run, can become a complex medication to deal with. I will agree with David that it would be worthy to check her B12 levels as we are indeed prone to have these deficiencies.
I'm assuming she is seeing the rheumatologist for the joint pain that are new right? At the same time, it worth seeing if your daughter can be tested for the anti-adalimumab (humira) antibodies. It is not everyone, be it is not rare that a patient taking that type of medication will be developing antibodies to the treatment after a while.

Many symptoms may be associated, directly or indirectly, with the development of these antibodies; joint pain being one, extreme fatigue being another, so would be skin issues, etc. So, in a certain way, it can be a manifestation of that antibody built-up.

It can also be the other way around but also related to the antibody building up. Usually, when they start building in the system, it often means the medication is losing it's effectiveness. So, the tiredness and joint pain could also be manifestation of active inflammation in the body because the medication is not working anymore.

These are two points I wanted to underline in relation to Humira. It is a great thing she is seeing a rheumatologists as they are the best specialists to deal with the situation either these manifestation are a side effect of medication or an extra intestinal manifestation of Crohn itself.

 

[ben's rn]

My son always gets fatigued with CD flares....sometimes one of his only symptoms. Might she be flaring with different symptoms than before because of the resection?