Methotrexate and the Coronavirus – Persevering through Self-Isolation
May 4, 2020
Richard (richard0804), one of our ambassadors on Carenity UK, has been living with ankylosing spondylitis, osteoarthritis, type 2 diabetes and other conditions for many years. He graciously offered up his perspective on methotrexate, a key medicine used in the treatment of cancer and other autoimmune diseases including psoriasis, rheumatoid arthritis, ankylosing spondylitis, and Crohn’s disease, during this time of health crisis.
Hello, when did you start taking methotrexate and why?
I was first prescribed methotrexate in 2002 for a condition called ankylosing spondylitis. I started on 10 mg once per week then up to 20 mg and then eventually (10 years) back to 10 mg once per week. For the last few years my condition has ‘settled’ down a bit, but I still have the odd flare up. I have taken several biologic treatments (in the hope that they would improve my condition) such as Humira and Enbrel. My latest is a drug called Cosentyx. Since starting on this drug I noticed within a couple of days that my pain levels seemed to be getting easier to manage. Then with the introduction of Tramadol (for pain relief) I really noticed a vast improvement of my pain levels.
In your interview in 2018, you mentioned that methotrexate is a “very potent drug” that took a toll on your immune system initially. What do you think two years on? How has methotrexate improved your quality of life in the day-to-day?
I think that after the initial few years of ‘experimenting’ with medications the regime I now follow is the best result for me. At first I suffered many and varied side effects from genital thrush, iritis in both eyes, ear and chest infections, to catching ‘summer’ colds. I am very prone to infection, especially the coronavirus, I have been in isolation for weeks, with no outside contact at all. Now that I can move better my day-to-day life is more bearable. I think that the 40% improvement of pain levels has been the catalyst of the improvement, and I have no more horrible side effects.
Have you seen any change in your conditions or symptoms due to the isolation and health crisis?
Since the government isolation, I have had considerably more pain issues. Because I can’t go out for a walk, I find it hard to exercise in doors. As a consequence I sit and watch television an awful lot more than I did before, and there’s no point in me going out to our greenhouse because I can’t get any plants, compost, etc.
Have you had to change your medications or treatments due to the crisis? Have you had any difficulties obtaining them?
Whilst the threat of COVID-19 is around I stay at home, my medication is ordered online and my neighbour ‘pops’ down the town and picks it up for me. I have some brilliant neighbours. The supply of my medication has not been affected by the situation we’re facing.
Do you continue to see your doctor(s) at this time?
I had a home visit from the phlebotomist to take my now monthly blood test to see how I am coping with taking Methotrexate over such a long time. Any abnormal test results and prescription changes are dealt with over the phone.
How do you spend your days during self-isolation? Do you have a routine to help ease your symptoms?
My days can be rather dreary at times, the same routine everyday made worse by the lockdown, there is no escape from the boredom and frustration. I was a very active ‘Development Engineer’ working to find tolerances building machines for virtually any situation worldwide. Then ankylosing spondylitis crept in and that was that. My life changed dramatically, couldn’t move without assistance, and couldn’t open jars, my life just flipped on its head more or less overnight.
Do you have any advice for others in self- isolation?
For those of you like me who have to self-isolate due to underlying health conditions my advice is to follow government guidelines and stay in isolation until it is SAFE to start to go back to some sort of normality. If the virus comes back again then we will find it really hard to fight a second time, all because we ‘thought’ that we knew better? I think government scientists know better than us.
What is the first thing you’d like to do when isolation is over?
The first thing I will do is go and visit my uncle Arthur, who brought me up for the first two years of my life. He’s 81 years old and in poor health, he had a stroke about 10 years ago and made a virtually full recovery. More recently he has been taken by Parkinson’s disease. He spends his entire life sitting in the dining room watching his television - he can’t walk, he has to shuffle, he needs help with everything. He’s like a very young child, but I know my Uncle Arthur is still in there and can recognise me. He is always asking for me: “When's Richard coming down?” I love him with every cell in my body. When he goes to meet his maker, I will just fall to pieces, but I know he will always be in my heart.
Any final thoughts?
Just persevere and ‘go with the flow’. If you are patient you will get the right 'recipe’ for YOU. Don’t put up with things that you know are not right. Talk to your health professional, air your worries with them and work out a solution that is good for YOU. GOOD LUCK.
And what about you? How are you coping in self-isolation? Have your symptoms evolved or changed? What is your isolation routine? Feel free to share in the comments below!