Unfortunately there has been a few setbacks this weekend. I’ve
been feeling unwell since I started taking the cimzia; nausea, headaches,
migraines, fatigued. On Thursday night I experienced a new pain. Normally I’m
not too worried about pain, but this was something I hadn’t experienced before.
It wasn’t a pain I was used to from my arthritis/ankylosing spondylitis or any
of the other issues and I’m pretty certain it was a direct result of the
medication rather than anything else.
I lost a lot of feeling in my right leg, it was tingly and
numb, kind of like pins and needles down from my bum to the foot. There was
also a burning sensations in my joints (lower back, hip, knee and ankle). It
would be okay then it would feel like a hot stabbing burning pain in the joint –
particularly in the knee which wasn’t pleasant to put any pressure on to walk.
Having read the manual that came with the drugs, there are quite a number of
side effects. Unfortunately for me ‘tingling, numbness, muscle weakness and
burning sensations’ all came under the ‘SEEK MEDICAL ATTENTION IMMEDIATELY’
category. But at 11pm on a Thursday night, I wasn’t really up for A&E so
decided to leave it and see what it did.
Friday was much of the same feeling. Even for the feeling to
be slightly worrying. I attempted to phone my rheumatology nurse on the number
she gave me in case I needed to contact her for an emergency…..to which she
wasn’t there. I don’t mind people having holidays or days off, but if it’s an
emergency number, I at least expect someone who knows where they’re talking
about to look after the line until the other nurse comes back. The receptionist
then gave me the number to the nurses helpline, so ringing that I got an
automated message to leave my name, number, issues I was having and they’d
phone me back……..in one to two days’ time. I could be dead in two days’ time!
It could be nothing, just a common side effect but since it’s
something I’m not used to, I made an emergency appointment with a GP, since it
is on the ‘SEEK MEDICAL ATTENTION IMMEDIATELY’ list. He was very helpful,
despite having never heard of the medication I was on (which I had pre-empted
and brought the information book along with me). I did the right thing since it’s
painful and something I haven’t experienced before. The outcome is that he’s
going to phone my consultant rheumatologist and see what the story is basically
– is this common side effect? Is this something to worry about? Is my leg going
to fall off? My next set of injections are due on Tuesday, he said to hold off
taking them until I hear back.
Since speaking to the GP on Friday and today waiting for him
to phone back, the loss of feeling and burning pain in my leg comes and goes. I’m
also experiencing a loss of feeling in my right arm. When lying down, I seem to
lose feeling in my arm in about a minute. Not even lying on my arm. No matter
what position or how I angle it, it begins to go numb, which is also something
new and very unpleasant.
So the current state of play is waiting for the GP to phone
me back after he’s spoke to my consultant and I can see whether I can take the
next set of injections or if I need to make an appointment to get checked out.
In the meantime this afternoon I have bloods and various function tests to have
done to see if the cimzia is starting to do anything.
Robyn x
