Sorry there have been no posts for a while. I haven’t been able to face using the computer very much as I have been feeling pretty grotty. I’d been having a spell of migraine-type headaches before my infusion and after it, it seemed to get a lot worse and developed into fevers, nausea, feeling tachy etc. Saw a locum GP on Friday, who told me I had an infection somewhere and that my body would have to fight it off itself, despite being on all these immune-suppressant drugs. I gave him the benefit of doubt but over the weekend the fevers became worse (the shivery hot type) and I thought I was in my childhood bed/room, so was obviously not quite with it.
I saw my actual GP (who is great) on Monday and he gave me a good examination, which confirmed the suspected infection – my glands were swollen, ears and throat inflamed and sore, plus I felt like I’d taken a punch to the face. He diagnosed it as Sinusitis and prescribed me some antibiotics. This is always difficult as, since I’ve had all this autoimmune trouble, I have become allergic to many antibiotics, including Penicillins, Cephalosporins, Clindamycins, Erythromycins, Metranidazole… Usually, I take Ciprofloxacin; but he has prescribed Doxycycline for this infection, which is stronger, while it is in the head and I’m immune suppressed. He said there are horror stories of people not taking such infections seriously and ending up with Meningitis or Septicemia; therefore, he wasn’t very happy with the locum.
I’ve been taking the tablets for a few days now and still feel yucky. The temperatures have eased and the head pain has improved enough to allow me to read and use the computer, but it is still there and still bothering me. Plus it feels like I’ve had all the life sapped out of me again. I also feel bruised and tender all over – from my little toe up to my eyebrows – and my stomach is absolutely killing me. But it is only for a week and hopefully the Docycycline will clear the infection, leaving me feeling better by the end of the course. That’s if it is Sinusitis to blame.
I can’t help but feel the Infliximab infusions are to blame in some way. I have had so many minor but troublesome infections since starting it, much more than I have with any of the other biologics. Still, it is a small price to pay for the improvements it has brought me in other ways. I just wish that now the Still’s seems to be more under control, I didn’t have all these niggly issues holding me back from getting on with a normal day and from improving my general stamina. I’m hoping to start a phased return to work in September, but right now I can’t even imagine it because I’m waking up feeling rotten every day, rather than feeling good like I was a few weeks ago. I just want to get off the rollercoaster and be able to settle into some sort of routine wellness. As great as it is to feel better, I won’t get very far in the real world if that wellness varies daily.
I know it’s just a temporary setback, but I have so far to go in the next four weeks, to get myself back on track and back to work.
It’s gonna be an uphill struggle, that’s for sure.