A Painful Return To Pills
I'm ever so grateful for my medications and they have completely turned my life around.
I was diagnosed with rheumatoid arthritis in 2015 and ankylosing spondylitis in 2019. During these times my body was in a terrible way; my inflamed joints ballooned and I was unable to get around without the help of crutches or a wheelchair.
This all changed when I received my medications. Granted, it took around 9 months each time to get me back on my feet, but to return to that stage was no mean feat.
I currently inject Enbrel once a week to sort my pesky AS out and I let Methotrexate handle RA related business.
Side effects
I used to feel pretty blessed by the fact that these medications went a bit easy on me when it came to side effects.
My Enbrel often gave me a bit of a snotty nose, which was far from sexy but nothing a bit of nose blowing couldn't fix.
The methotrexate would occasionally give me a bit of a hangover the following day, but as a Brit this was something I was more than equipped to handle.
Fatigue is also an unwanted guest in my life. However, as my conditions can both cause this, I give my meds the benefit of the doubt on this one.
I've had many a conversation with fellow spoonies who have told me about their awful experiences with side effects and would feel guilty about how mild mine were in comparison.
That was the case until recently anyway.
Stopping meds
Recently I was forced to put all of my treatments on hold for about 2 months.
It began when I found myself getting ill. Luckily, it wasn’t COVID, but nevertheless I followed my rheumatologist’s advice to take a break from the immunosuppressants until my body sorted itself out.
Two weeks later I finally started feeling alive again and was getting ready to crack on with my meds once more. But before I could inject myself, I received a call telling me I was booked in for my COVID booster.
I was informed that I should refrain from taking my medications for the week before and the week following the jab in order to increase its efficacy. After dedicating so much time and effort into staying safe from COVID so far, I figured it would be worth it in the long run to go an extra two weeks without.
By this stage, I was starting to feel my stiffness and pain levels creeping up and couldn't wait to get those meds back in my veins again.
Unfortunately, on the day I was planning my return to injections, I woke up as sick as a dog. My drug hiatus was forced to continue until I finally recovered 2 and a half weeks later.
Getting back on meds
I could feel my body crying out for medication and for the first time I was actually looking forward to my injection day the following Monday.
I successfully pumped my body full of Enbrel with no issues and woke up the next day with a very relieved spine.
Thursday came and it was time to reunite with my Methotrexate pills. Unfortunately, this did not go as smoothly.
I popped my pills and whacked on an episode of Fargo. Before the episode had finished I started feeling awful…
Feeling terrible
This was over two weeks ago and since then I have had constant nausea. My fatigue has been at an all time high and I have struggled to get anything done.
I've been feeling like an absolute zombie. Even dragging myself out of bed to go to the toilet has required a very high level of urgency to get done. I’ve had to consume an ungodly amount of coffee to get my fingers tapping and my brain in gear to write this all down.
The nausea and fatigue have combined to make meal times a very stressful ordeal. It takes all of my energy to drag myself into the kitchen to prepare a meal. By the time I have got everything ready, I have zero motivation to eat what is in front of me. I have tried to compromise by planning simple meals that go down easy but this is definitely not sustainable moving forward.
My already terrible sleeping pattern has sunk to an all time low as I find it impossible to feel comfortable enough to doze off, despite how tired I am constantly feeling.
Hopefully this is just a phase
This is not the first time I’ve had to put my medication on hold, but it is by far the longest I have gone without it. Previously, I haven’t gone without it for longer than two weeks and I wasn’t aware of any changes during this time.
To be honest I can't quite remember how if I experienced similar things when I first started taking these medications as I was already in so much pain that it was hard to keep track of things.
It has been made the days I take this much needed medication unbearably stressful. Fingers crossed this is just a shock to the system and will pass as I get used to having these meds in my system again. Time will tell.
Do let me know if you’ve had a similar experience.
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