The Humira Diaries, Month Two
Editor's Note: Response to treatments are different for every person. Please discuss any concerns about medications with your healthcare professional.
If you've been following my writing on here, you may have read my first blog post all about my first month of starting Humira and my experiences.
This is now my second month, and I thought I would just share about how I'm getting on, whether I think it's working (and any other side effects that I've experienced).
Week five on Humira
This wasn't a great week for me. I've weaned off Budesonide, and probably a week or so after coming off it I noticed that my symptoms started to creep back in.
I went from having completely solid bowel movements to much looser ones and pain and urgency and to be honest at this point I did start to panic!
At this point, I rang my IBD team, and they did offer me some reassurance. They explained that it can take up to 12 weeks to notice a difference on Humira. And through my research, I found that was true.
Most people seemed at the earliest point of noticing an improvement tended to be around six to eight weeks from what I could read so that did put my mind at rest a little bit.
The IBD team offered to start me back on my steroids for two more weeks and then wean off them again, in the hope that I'd be closer to that 12-week mark, and therefore the Humira would start kicking in. However, I weighed this up and ultimately decided not to do this.
I really needed to understand if the Humira was working. The last time I was on Humira. I was pregnant, and therefore I never really understood if it worked either: it's an expensive and a strong drug, so I feel I really need to understand if it works because if it doesn't, then obviously there is no point taking it.
So I decided to just hold on, and have the patient in the hope that things would get better.
How I felt at week six
I'm really glad that I put off starting the steroids because this week seems to have been a slight turning point. I felt really good.
This week, my bowel movements seemed to be more solid again. I didn't feel 100% like I did on the steroids, but I felt as if something was working. I felt like I'd had some energy, and I was just feeling a little bit better so I'm crossing my fingers tentatively and saying that I definitely noticed a difference.
This week was the first injection that I did by myself. Previously, I've had a nurse here and then my mum did the injection. Because it's such a pain-free injection, I almost didn't register if it's gone in completely, but I know it did!
Another thing I would say is that the side effects of starting Humira have definitely reduced. I'm not having that woolly headedness and fog that I was previously experiencing.
After taking the drug, I am still suffering from tiredness a little bit but it is winter, it is Christmas, and we all know what a disastrous situation we are in at the moment! So I chalked the tiredness up to that rather than Humira.
The impact of my menstrual cycle on symptoms
It's now week seven. I continue to feel really good up until starting my period, and then I started to have symptoms again. Now I've always had worse symptoms during my period, whether that's loose stools or pain, it's just common for me.
However, I did notice when I went on the steroids, I didn't experience these symptoms for the first time forever.
So was this week due to my period or my IBD? I am due another injection in a few days so I guess I'll see if my symptoms continue or not!
Assessing if I need weekly injections
Week eight hasn't been great so I've rung my IBD team who are sending me off to do some blood tests to see the levels of Humira in my body. We'll then decide if I should up my dose to weekly injections.
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