Wow, where have those three months gone? A while ago I blogged about Humira after being so reluctant to try it. And you may have read on here I am currently pregnant. Because of that, I’ve had lots of you email and ask about my Humira experience: whether I felt it had helped or hindered my fertility, how I was feeling on it and just whether I’d recommend it to women my age. So I thought I’d blog about my experiences in the initial few months.
How I Found Starting Humira
This will be of interest mainly for those who are in the UK but I thought I’d just mention how I got on with the initial nurse’s appointment etc. If you don’t know, Humira is delivered in the UK via a company called Healthcare at Home.
I found the transition to beginning fairly straightforward. It was a bit annoying as my medicine had been delivered but there wasn’t a nurse’s slot until the following week (and I just wanted to get going) but when the nurse did come, she was really helpful. I told her I was trying for a baby and she put my mind at rest; explaining she saw lots of pregnant patients.
She stayed with me and my mom for a good hour and taught us exactly how to use the pen. To be fair, it was very straightforward and we felt confident we could do it ourselves after that. I had later dealings with a nurse who was not so helpful-but on the whole, it was an easy experience.
I found the first loading dose quite tough. I did a whole blog post on this for InflammatoryBowelDisease.net on what I dubbed the Humira hangover I felt really woolly, foggy and tired for a good few days afterwards.
Humira Side Effects
The worst of the side effects occurred in the first month-I suffered the same ‘hangover’ on my second dose (but that’s when you take 2 injections at the same time). Once I switched to single injections biweekly I didn’t have any real side effects. I did also try to do the injection of the evening so I went straight to bed anyway-but I think once I was on the single injections, I felt fine.
Did it Work for my IBD?
I can’t be as clear as I’d like to be in relation to this one. After about 8 weeks, I didn’t feel I was feeling any better really. However, it was quite difficult to judge as I was pregnant during the second month and from as soon as I found out to when I was 7 weeks; I had diarrhoea multiples times a day. At the worst, it was 6-7 times and nothing was staying down. Now, I think I’ve blogged before how, even in a bad flare, I don’t have hugely severe symptoms-so this was really unlike a flare I’ve ever experienced.
I spoke to the IBD team and my GP and they both agreed this was not IBD but hormones-and apparently it’s really common with women in the first trimester. I’m not sure if that was true-I think it was a kind of flare but triggered by hormones. However, because I was already on Humira and I needed it to kick in; the IBD team said it was just a case of waiting and they didn’t want to give me anything else for it.
A month later and things have completely changed. Once morning sickness started at 7 weeks, I noticed I was down to 2-3 toilet trips and a few weeks later they were completely normal! It was a good 9 weeks or so since starting Humira when I noticed this.
In the last few weeks, I have felt really well in terms of my toilet habits. They have been completely normal (even bordering on constipation at times) and this has stayed the same even when my eating habits have changed too. I find myself eating whatever I fancy at the moment-including things like strawberries and cheese which I couldn’t handle before!
However, I am still not ‘in remission.’ Annoyingly, I only had a blood test done as a baseline when starting Humira and not a stool test. My blood tests have remained normal (but my vitamin D levels have gone up massively so they’re now normal-but that could be because of the summer months).
My recent stool test was done about a week or so after I noticed an improvement in my bowels and it’s only slightly lower than my calprotectin from last year. Although I am gutted about this-my calprotectin was rising and rising quickly last year; and with my ‘flare’ in the early weeks of pregnancy-I suspect (well hope) this level did reach much higher into the thousands and now, hopefully, is on its way down.
When I had my MRI in January, there was two small patches of disease (even though my calprotectin was quite high) so I don’t think this number necessarily correlates to severity. Therefore, I know I’m not in remission but I am hopeful that at the very least, Humira has held this in check from worsening and is hopefully now working on the patches!
As my tests were done a week or so before the 3-month-mark; we still have some way to go but I have a doctor’s appointment next Tuesday which I hope to get more answers from.
I also know that most likely I will come off Humira at 6 months into my pregnancy (as this is when the drug crosses over to the placenta) so I plan to stay on it until then and hope we will see a more significant improvement. And in the meantime, I’m doing a blood test to see if my body still has the right amount of medicine left in it after 2 weeks. Either way, I am incredibly happy I no longer feel like I did at the start of my pregnancy and if Humira is preventing that then I am grateful.
Humira and Fertility
I had a lot of you ask about fertility and to be honest, I do think Humira played a hand in me getting pregnant (As the first month we tried to conceive on Humira, I fell pregnant). My doctor assured me at the time that there is no detrimental impact on fertility with Humira but of course, I worried.
However, there are *some* fertility hospitals that believe in a theory called ‘natural killer cells’; where the body attacks an embryo to cause a miscarriage in the same way that our bodies with Crohn’s attack our intestines. And therefore, they put patients on a short dose of Humira before trying to get pregnant. My understanding is this is quite a complicated process (and very expensive to be tested and treated for) but it did reassure me Humira couldn’t harm fertility as I’d feared.
On a practical level, it may well be that Humira started to work on some of the inflammation (clearly hasn’t got it all yet!Hurry up mate!) which was possibly preventing me from getting pregnant-since active Crohn’s Disease is proven to impact fertility.
It could also be quite possible that my previous attempts had in fact failed before I had realised and Humira stopped my body ‘attacking’ an embryo in a similar way as outlined above.
Or it could be acupuncture/a complete coincidence/about time I got a bloody break!
Overall, I have mixed feelings about Humira. I am obviously thrilled about the positives: the fact I got pregnant, my great blood results and my much-improved bowels. I can’t lie and say I’m not gutted about my faecal calprotectin results-unfortunately, my doctor has been erratic in testing in the past so I really have no sense of ‘normal’ or ‘better’ with it.
So the next step is to push to have these regularly and hope to see an improvement. However, overall, I’m still glad I started Humira for now. I hope this post was useful and would love to hear your Humira stories!