Hello,
I hope this post fits this forum and that it can help me find the information I’m looking for.
During my whole life I’ve always been healthy, doing sports, being active and rarely sick.
During early 2014 I started experiencing symptoms from my stomach. Diarrhea after eating and general discomfort. It took long enough to get a colonoscopy but after the colonoscopy it was definitive, high level of inflammation reaching from the small intestine into the large intestine. Calprotectin at high levels. I was given cortisone and started on Remicade treatment. My symptoms got better and the calprotectin down to normal. About a year after my liver values had gone up, so on I had to switch out Remicade and I was given Humira.
It worked as supposed in the beginning, then came the summer of 2016. I was going to travel to Hong Kong on vacation. Everything was planned, I brought the Humira medication with me. But before the vacation had started, I started feeling unwell in my stomach. Long story short, I ended up walking with immense pain from my stomach until I eventually crashed. I had to cancel the vacation and fly home. At home a new colonoscopy was done, two large intestinal wounds could be seen, the cause of the immense pain in my stomach. When I came home my dose of Humira was also doubled to one injection per week.
But, during my vacation in Hong Kong, I started feeling stinging neurological pain from my back and legs. I didn’t think to much of it as it didn’t bother me to much and I was having enough problems with my stomach.
Eventually a month passed, the stomach got a little better, but the neurological symptoms had now evolved and was even worse.
I now experienced muscle fasciculations through out my whole body, in all muscles imaginable. The muscle fasciculations were now also combined with neurological symptoms such as stinging, cutting and burning pain.
In the beginning of 2019 I also started to feel that my legs were getting numb and eventually I didn't really feel much of my feet, its like walking on pillows and so on my balance is impacted.
I brought this up with my gastroenterologist and eventually in September 2016 the Humira medication was stopped. He told me it could be a side effect of the medication. He also told me it could take years for it to fully go out of my system and that the symptoms could persist for that amount of time.
But, now, the years have passed since 2016 and I’m still experiencing the same debilitating symptoms. Also, for about a week ago my current doctor ruled (after an extensive number of examinations done at the hospital) that my symptoms indeed are caused by Humira side effects.
I now turn to you as a community with the hope of getting in touch with persons that have experienced the same side effects from Humira.
I hope to find people I can talk with about this and to hopefully get some advice on what to do next.
All the best
I hope this post fits this forum and that it can help me find the information I’m looking for.
During my whole life I’ve always been healthy, doing sports, being active and rarely sick.
During early 2014 I started experiencing symptoms from my stomach. Diarrhea after eating and general discomfort. It took long enough to get a colonoscopy but after the colonoscopy it was definitive, high level of inflammation reaching from the small intestine into the large intestine. Calprotectin at high levels. I was given cortisone and started on Remicade treatment. My symptoms got better and the calprotectin down to normal. About a year after my liver values had gone up, so on I had to switch out Remicade and I was given Humira.
It worked as supposed in the beginning, then came the summer of 2016. I was going to travel to Hong Kong on vacation. Everything was planned, I brought the Humira medication with me. But before the vacation had started, I started feeling unwell in my stomach. Long story short, I ended up walking with immense pain from my stomach until I eventually crashed. I had to cancel the vacation and fly home. At home a new colonoscopy was done, two large intestinal wounds could be seen, the cause of the immense pain in my stomach. When I came home my dose of Humira was also doubled to one injection per week.
But, during my vacation in Hong Kong, I started feeling stinging neurological pain from my back and legs. I didn’t think to much of it as it didn’t bother me to much and I was having enough problems with my stomach.
Eventually a month passed, the stomach got a little better, but the neurological symptoms had now evolved and was even worse.
I now experienced muscle fasciculations through out my whole body, in all muscles imaginable. The muscle fasciculations were now also combined with neurological symptoms such as stinging, cutting and burning pain.
In the beginning of 2019 I also started to feel that my legs were getting numb and eventually I didn't really feel much of my feet, its like walking on pillows and so on my balance is impacted.
I brought this up with my gastroenterologist and eventually in September 2016 the Humira medication was stopped. He told me it could be a side effect of the medication. He also told me it could take years for it to fully go out of my system and that the symptoms could persist for that amount of time.
But, now, the years have passed since 2016 and I’m still experiencing the same debilitating symptoms. Also, for about a week ago my current doctor ruled (after an extensive number of examinations done at the hospital) that my symptoms indeed are caused by Humira side effects.
I now turn to you as a community with the hope of getting in touch with persons that have experienced the same side effects from Humira.
I hope to find people I can talk with about this and to hopefully get some advice on what to do next.
All the best
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