It’s been quite sometime since I last posted. I think it was maybe 9-10 months ago, when I started my first biologic Cosentyx. I reached dose 13 last Saturday and boy has the biologic journey been a roller coaster.
I had pinned all my hopes on taking Cosentyx, in my mind this was meant to be my saviour, the drug that would allow me to be ‘normal’ (whatever that is) again. And for the first 3-4 months following the initial 4 week bolus, I felt great, I was nearly (with a few twinges on some days) back to myself. Everyone noticed, my family, friends, work colleagues, even the postman, as I was cheerful, energetic and full of hope. But by the 5th month, I gradually began to recognise that a few days leading up to my monthly injection that my joint pain began to increase. This went from days to weeks and then I was pretty much having joint pain and other symptoms 24/7. I was back on the anti-inflammatories and other pain meds. I saw my rheumatologist in January, he gave me another anti-inflammatory to try, with the intention of changing to another biologic if the anti-inflammatory didn’t work. I didn’t make it to my next 4 week appointment, I was on the phone to my rheumatology nurse, as I just couldn’t cope with the pain. I saw her on Monday and as she was so willing to listen to my woes I was able to tell her all that I was experiencing and how difficult it was being a mum, working full time and managing this horrendous condition. She didn’t hesitate with starting me on my soon to be biologic number 2 (adalimumab), it’s called Imraldi. It will be a few weeks before the change over happens, so in the meantime I am stuck at home. Today I can hardly walk. I have pain in every small bone in my feet, my right ankle looks like a baby melon, my knees are like cantaloupes, my fingers and hands are stiff as wood and my elbows are sending sharp shooting pains to my hands. So all in all I am in tip top shape .
But the icing on the cake was that my nurse was able to give me a little more insight into why my back pain may have returned, since it has been under control for the past few years. I should say at this point that I am also a chronic back pain sufferer. This all started way before my rheumatology issues. Past MRIs have showed it was mechanical and that I have dehydrated bulging disc from L3 to S1, hence the reason for the chronic back pain (or so I thought). I take neuropathic drugs for this and it’s been well managed until about 6 months ago where I began waking up with a horrendous stiff back and neck. I did mention this to my rheumatologist on a couple of occasions and he did say it possibly was the arthritis in my spine. But he wasn’t definitive. However, I was able to talk to my nurse about my back symptoms on Monday and she was able to identify that I was listing symptoms for another condition called ankylosing spondylitis. She gave me the literature to take away, sent me for a blood test for the HLA-B27 gene and a pelvic X-ray with the proviso that I come in for an MRI should the X-ray show anything.
I have since read the literature and I was reading my clinical history. The symptoms matched my back pain history in every which way. I didn’t want it to be me fitting myself into the condition, so I got my husband to read it and he looked at me afterwards and said this is all you. My family also has a history of back issues, my dad when he was alive, suffered terribly with back pain and my mother tells me he had this all his life. My sister also suffers with chronic back pain and just recently she revealed that she’s been diagnosed with rheumatoid arthritis. My mother has psoriasis although neither my sister or I have this condition, but in the absence of the RA factor my rheumatologist is convinced that my symptoms fit with a PsA diagnosis.
So now I’m waiting to hear about my X-ray and blood results, I’ll start the Imraldi (biologic number 2) soon and I will see my rheumatologist to find out if I also have ankylosing spondylitis or a related condition like psoriatic spondyliarthritis.
So this is my adventure so far for 2019.
I have been writing this post while waiting for my pain meds to take effect. I think they have, so I am now going to hobble along to the bathroom to undertake the gruelling task of getting showered and dressed for the day.
I hope you all have a good day and if you do have a spare 5 minutes, I would be interested to know if any of you have or have heard of anyone with both PsA and AS.
All the best,