Note that this post follows on from the a previous blog post which can be found here.
It’s now been 9 days since I injected Humira again since the switch back. It’s not been the most straight forward introduction as those of you who follow this blog regularly will know, I’ve had a chest infection for 4 weeks and recently got told I had a secondary infection of tonsillitis so not the best time to be introducing a new drug that beats down the immune system.
I had already delayed my Imraldi by a week or so and by this point the pain in my joints was starting to become as big of a problem as the infections so I decided to inject on the 16th November. Admittedly this probably didn’t help the development of tonsillitis but at the time I put my symptoms (cough, sore throat, high temperature and muscle aches) down to the return of the chest infection.
I’d by lying if I said I wasn’t apprehensive. I mean I was delighted to be back on Humira but after almost 11 months of fighting the decision to put me back on it after the biosimilar switch, I had a lot riding on it. What if it didn’t work like it used to? Not only for my health and quality of life but for all the favours I called in with Drs, charities etc. to build my case and get the decision reversed. I felt the pressure of having a lot of people counting on me to be the good news story everybody hoped for.
By Day 7 I was getting a little twitchy. I totally understand biologics can take up to 12 weeks to make a difference but it’s important to know that when I first took Humira (would have been around 5-7yrs ago) I was virtually pain free within a week and rash free within the first month – it really was an absolute miracle drug for me so when I got a week in and hadn’t noticed a change (in fact, I felt rubbish but I now know the joint pain was from the fever/infection), I started to panic. My wife reminded me to be patient and that my body was dealing with a lot at the moment.
Day 8 and I get ready for bed and realise I haven’t taken painkillers all day. Coincidence? I do a quick mental body check – it’s a thing I’ve always done to be aware of what hurts and what doesn’t. I go through each of the main areas in my mind and give them a rough score based on pain and stiffness/movement. It might sound silly but with a chronic condition, it’s so easy to focus on the pain and negatives that often we don’t notice when we’re having a good day or something stopped hurting. I find it a good little way to remember the positives and help come up with a plan for that dodgy knee, for example, that’s steadily getting worse before it becomes a real problem.
My heels no longer hurt standing on the hard floor in the bathroom – come to think of it, they didn’t hurt in the kitchen earlier either – often I have to leave the kitchen during cooking, washing up or feeding the baby as after ten minutes, it can be too much on my heels if they are particularly playing up; which they have been consistently for the last couple of months, even when seated. This could actually be something…
Day 9, today, and still no heel pain. Yes my knees, fingers and back still ache but the heels had been a real problem area for me. I also notice today that some rashes on my fingers and knuckles that have been reliably there all year since the switch to Imraldi are no longer flaking, cracked or open sores but instead pink – almost like scar tissue on a cold day. Upon closer inspection, my skin is definitely, certainly, completely recovering on my hands!! I could cry – after the six weeks of poor health in particular I’ve had of late, all the time off work due to infections – it’s suddenly all worth it. I can’t tell you how frustrating it was to have all the downsides of biologics/biosimilar treatment with none of the positives. However, if the rashes are healing and the pain is reducing, bring it on, I’ll take every infection and virus you can throw at me as when the condition is controlled my quality of life is on a different level and my body is that much stronger and healthier to deal with the side effects that come with biologics.
Today is a good day (in context, I’m currently laying in bed with a temperature of 39.5C!), fingers crossed this trend continues and I have more positive news to report next week.