My Humira Journey: 4 months on
Last updated: March 2020
Way back in August, I blogged about my experiences of a Humira hangover. I shared how drowsy, foggy and fatigued I felt after my loading doses. Today, I thought it was only fair to come back to this topic to chat about how I'm coping with Humira four months down the line!
Does the Humira hangover go away?
Surprisingly, my 'hangover' started to wain shortly after I wrote my blog post. For the first month, I took a loading dose (higher than usual) and then two weeks later two injections. However, by my second month, I was down to just one injection fortnightly.
As soon as I switched to just one dose, I definitely noticed a massive reduction in tiredness and fog. I also found at first that injecting just before bed started to help. This way I could sleep it off. But now, four months down the line, I tend to just do it whenever I have the time. I can usually just go about my day. So if you read my previous blog, it does get better!
A positive pregnancy test on Humira
A month on Humira brought a very welcome surprise: a positive pregnancy test! I was struggling with fertility (one for another blog post perhaps) and avoided taking Humira whilst exploring various different avenues to see if I could conceive before having to start it (I'd somehow got it into my head that it could cause fertility issues to worsen but please note, there's no evidence for this).
However, just as I hadn't expected it, in my 2nd month of Humira- I found I was pregnant! Whether it was coincidental I'm not sure, but I'm very grateful all the same! So there's living proof you absolutely CAN get pregnant on Humira.
Humira eventually led to less diarrhea
My symptoms have been a story of two halves since starting Humira. I didn't notice any difference at all during the first month-but I'd read that was to be expected. However, as I discussed in my 'The First Few Weeks of Pregnancy with IBD' blog post, my symptoms suddenly got a lot worse right around the time I found out I was pregnant. For around a month (which would have been somewhere between 5-9 weeks or so of being on Humira) I had diarrhea around 7 times a day and struggled to keep food down.
This was most definitely the worst 'flare' I've experienced (I don't tend to go to the toilet a huge amount of times even when my inflammation is sky high!) and I was so worried. It seems that this was possibly a hormonal reaction as once my morning sickness started, this seemed to calm down.
Once I got to around week 10 of Humira my stools were much more solid. It was around weeks 11-12 that I noticed I was having completely solid bowel movements (sometimes even feeling a little constipated!!) which I'd never experienced consistently.
I have been gluten and dairy-free to help my IBD symptoms for as long as I could remember, but I noticed that I could eat things I hadn't used to be able to- like the odd bit of cheese, lots of fresh (fiber-rich) fruit and more. Even when on Remicade previously I had to stick to my diet.
Symptoms vs clinical markers for remission
Unfortunately, since nothing is simple in my life, I'm not yet in remission. My bloods are normal but my stool inflammatory markers (taken are 10 weeks) are still high. This has been a bit of an issue in the past (and while it does seem to indicate active disease for me; it doesn't necessarily correlate the severity).
So for now, my doctors are pleased that the Humira does seem to have done something and hopefully, continuing for a few months might bring down my inflammation further (or that it has already started to fall but isn't reflected in my stool tests yet).
Will I stay on Humira?
I was reluctant to start on Humira, but I am really happy I made the decision. I do think it played a part in helping me conceive and although I wish I was in complete remission, it is so amazing to just almost 'forget about' my toilet trips-in that there's no urgency, no pain, no diarrhea-that I just don't even keep track of them!
I know I have to come off the drug at 24 weeks anyway (I'm currently 16 weeks pregnant) so I will hope it can just do a little more to help me in the meantime for me and baby! I'll keep you all updated on my progress!
What has been the most helpful for managing IBD symptoms?