I saw in the discussion “Why do some rheumatoligists seem reluctant to prescribe biologics?” the mention of opportunistic infections and, as always, see the concerns those new to DMARDS and biologics have about potential infection. And this has reminded me, and @Sybil has also asked me to post, about my recent infection experience. It’s a long one so be warned!
Firstly some background. I was diagnosed in early 2012 and pretty rapidly moved through the DMARDS of methotrexate and leflunomide before a short, ineffective, three month trial of Humira in summer/autumn 2013. Even though the mtx hated me and lef too, eventually, and I was often prostrate with nausea, fatigue and the pain of being in “the gap” my general, non PsA health, remained as robust as it had been all my life.
I started Simponi 50mg monthly in March 2014 and that was when things really began to improve PsA wise. After about 18 months I was moved to the higher monthly dose of 100mg as my then, new, rheumy felt there was still some way to go to be as well as I could/should be. And this dosing has continued to date.
So I can confidently say that in six years of treatment my general health has been pretty good. A couple of normal cold bugs, a stinker last November, and a bit of a suspected urinary tract infection is all I’ve had. Only the week on abx for the suspected uti delayed my Simponi injection.
Once I got over the horrible cold the end of last year, 2018 has been ok. I
suppose, in hindsight, I’d maybe noticed having a bit less energy for a few months but, as we all know, PsA waxes and wanes and I also have the double whammy of a fibromyalgia diagnosis. These days I find just living in the moment is the best way through PsA/FMS for me so something new/different has to give me a slap in the face to get much attention.
Just over a month ago, middle of a Thursday/Friday night, I woke up with pretty awful lower back and hip pain. I wasn’t altogether surprised as I’ve recently had x-rays and MRI’s of my spine, SI joints and hips which showed a few bits and pieces to account for the pain I’d been complaining of the past six months. So, as you do at 3am, I cursed PsA and tried to get back to sleep. Friday morning I took the “b*gger this” approach and swallowed my rescue NSAID, Arcoxia, and carried on.
Over the weekend I felt increasingly unwell, the back/hip pain lessened but I just felt generally unwell. Nothing I could put my finger on so in my mind PsA was the culprit. Then Saturday night the drenching night sweats arrived. By Sunday afternoon I was pretty out of it and telling my husband I needed a doctor first thing Monday.
Thankfully my primary care practice are pretty good and they got me in to see the duty GP mid-morning. I was still thinking this was a PsA flare! She soon dissuaded me of this view when she took my temperature, fever level, and the dip test on a urine sample I’d taken with me was high for protein, which is an indicator for infection. At this point she was reluctant (too reluctant!) to prescribe a broad spectrum antibiotic but took bloods for urgent testing and sent me home to take paracetamol/tylenol.
The blood results were in late Tuesday and I picked them up online … ESR, CRP and white blood cells off the scale. This was in marked contrast to absolutely normal range results in my regular monthly blood test just two days before the back/hip pain started. Unfortunately I didn’t get the call back from the GP until lunchtime the next day, Wednesday, when the directive was “you are to get yourself to the hospital immediately, they are expecting you, go to emergency admissions”
This was a bit of a shock! Actually that’s an understatement … I had a moment of blind panic not least because I had never been in hospital before in my life! Thankfully my husband was home looking after me anyway so was able to bundle me in the shower, help pack a bag and take me to hospital.
On arrival I was seen within 10 minutes or so, canulas in, blood out, ECG, temperature, blood pressure, oxygen saturation, throat swab, more urine all the standard stuff. Then two doctors for alot of questions and examination … ah huh, crackly lungs, but no, I haven’t had/got a cough! Off for a chest x-ray and then back to be told I was being admitted and treated for suspected flu and/or pneumonia. My night then consisted of hourly observations, iv fluids, iv antibiotics (TAZ and Gentamycin) and iv paracetamol/tylenol along with fans and open windows and no bed linen except for a sheet to try and get my still escalating temperature down. Of course by now the fever had me swinging between the drenching sweats and shivvering cold. I felt pretty out of it and I think I had some barely lucid moments.
All the tests were so far coming up negative for anything conclusive but, bizzarely, I started up with a dry tickly cough that night and a weird “fizzy” sensation in my lungs at the end of an outbreath. Thankfully, because they thought I might be infectious, I was given my own private room/bathroom which, given the effect of the iv antibiotic, was something of a relief. But aside from sickness/diarrhoea I felt substantially better the next morning.
Thursday passed in a blur of continued obs, testing of all bodily output, maintained iv fluids and eventually switching on to oral abx and paracetamol. I even managed to eat a sandwich and drink a cup of tea at supper time. As the day progressed my temperature continued to drop, I felt so much better in myself and I started plotting my escape for Friday!
The consultant visited me Friday morning and after some persuasion he agreed that I was stable enough to return home provided the bloods just taken were normal. My discharge papers arrived shortly after lunch along with MORE antibiotics (doxycycline and amoxicillin) for the following week.
Relieved to be home I was a good, compliant patient, took my abx and rested, ate well and all that good stuff which returned me to feeling pretty well although strict instructions from both the hospital and my rheumy team not to recommence Simponi until 1st August.
BUT a month later (last week), almost to the day, the “fizzy” lungs came back. Along with swollen neck glands and just a slightly elevated temperature. So I have another week of abx, doxycycline and clarithromycin this time. Within 48 hours the “fizz” had stopped. And a follow up chest x-ray this coming Friday.
So I still don’t have a conclusive diagnosis. There may be something in the hospital report from all the swabs and cultures they took, this will be included with the follow-up x-ray report. I still feel blindsided by what has happened to me these past five weeks. In trying to make some sense of it and be more aware in the future there are two key things I’ve done:
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Purchased a thermal scan ear temperature gauge … I will never, ever, have a fever again and not know it!
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Purchased a pot of urine test strips so anything out of kilter will have me straight to the doctors.
And the biggest lesson, if all the signs of an infection are there, to push the primary care doc/GP to prescribe abx immediately on the grounds that even if the primary infection is suspected to be viral it is absolutely essential to support the immune system to prevent sepsis or a secondary bacterial infection. From what I understand from the docs at the hospital and my rheumy team I’ve been a pretty lucky lady.
Does this make me anxious about being on a biologic? No! I’m 55 years old and have been on immunosuppressive treatments for six years and this is the first time I’ve had anything like this in my life … I can’t say with certainty the biologic had no part to play but what I do know for sure is that without it I’d be living (miserably) a very different life. Once I finish the abx this week and so long as I feel well, my rheumy team have confirmed they are happy for me to stick with restarting Simponi on 1st August.
When I see the final hospital report I’ll update this post with what it says.
Although I’ve been through the mill I hope the randomness of my experience in the context of my age and duration of PsA treatment goes some way to reassuring anyone worrying about starting treatment with any DMARD/biologic.
PS. In case anyone is wondering @tntlamb the doxycycline has helped my aching joints a bit and, no, I’ve not turned any shade of Smurf blue on only two seven day courses 
)