by Anne Pallen
“I was in misery over those 20 months; I felt utterly alone. The nights were the worst, no real rest.”
It is difficult to realize that in 2024 I will have been taking Methotrexate for 34 years. I am doing very well with it, my arthritis has really quieted down, and most importantly I am leading a full and busy life. But it was not always so. My struggles with arthritis began in 1985, when I woke up with very sore thumbs on Labour Day. When this pain continued, I visited my Doctor, who said casually “Oh, that’s arthritis”. I had no idea arthritis hurt that much! After a couple of weeks, the pain subsided.
Two years later, in September 1987, I was in trouble again. I slipped as I was helping my mother into the car and two days later my neck was so stiff, I couldn’t move my arm away from my body. Pain continued in my shoulder, neck and head. I started taking Entrophen 10, three times a day (each equivalent to 2 aspirin.) This was my own idea. I hoped the coated aspirin wouldn’t bother my stomach. I saw a Rheumatologist who thought I had bursitis, not rheumatoid arthritis (RA) and suggested I stop the Entrophen. But the pain was too much. By the end of October blood tests showed an elevated sedimentation rate, and I was positive for the rheumatoid factor. I took 4 Entrophen daily by then. My left hand and my feet were starting to bother me. I had a dreadful time getting rings off my fingers for X-Rays. I took Tylenol #1 (codeine), but knew I shouldn’t keep that up. By early December the middle joints of my fingers on both hands were horribly swollen. Christmas was difficult, all the cooking left me so tired, and I was waking in the night, very uncomfortable. In January I saw a Physiotherapist. The stretching, ultrasound, warm water, and tens for my swollen joints would help for about an hour then back to pain. Nights were increasingly difficult. I wrote, “I am uneasy” in my diary. (I had started keeping an ‘Arthritis Diary’, to keep track of my treatments.) I went to the Library to research what was wrong with me. I was very surprised in 1988 to find very little helpful information. Three or four books of old wives tales, another by a woman who had controlled her arthritis with daily swimming, and only one book, by Dr James Fries, that seemed to be about my condition. He had arranged a diagram (of symptoms) that helped determine the type of arthritis one had. Mine, as I had suspected all along, indicated RA. Though there are some one hundred types of arthritis, they fall in two main categories: osteoarthritis and inflammatory arthritis. RA is one of the latter types.
I was in misery over those 20 months; I felt utterly alone. I tried an arthritics swim group (I’ve always loved the water) but I felt too tired and sore the next day. The nights were the worst, no real rest.
The only relief I could find was from icing my joints for 15 minutes, I hate cold, but a heating pad drove me wild with pain. I tried to resume my normal activities, but felt worse by the week. People told me to eat garlic, ground flaxseed, wear copper bracelets, and give up meat, potatoes and tomatoes. None of these made the slightest difference. You get the picture. I was sore, stiff, swollen, inflamed and heavy with dread.
In September I went back to work, part time, as a lab technician in a school. Some mornings I wondered how I managed to drive there. I tried Plaquenil, during this time but felt no effect. I was depressed. I started a daily pain record, rating pain 1 to 5, with 5 being the greatest. I allowed myself to judge up to 3.9, only because I felt that if I went above 4 I would be lost! Now it was in my knees as well. I looked old, gray and finished! Then a tiny ad in a local newspaper drew my attention – ‘Got Arthritis?’ and a phone number. Two important things happened. I joined AWISH, and met others with RA and realized that the key to help was finding the right drug. I attended my first meeting. There was a jar for loose change on the table as one signed in; the executive were on the stage. Probably about thirty people were in attendance. “Look at these women laughing and talking” I thought “There’s not much wrong with them”. But there present were, Connie Jelley and Janet Clear-Barnes that I was particularly drawn to who had rheumatoid arthritis as I did.
I started the Arthritis Self Management Program that included information about the types of arthritis, the possible medications, diet, exercise, rest and activity. A little later I started taking a new drug Methotrexate.
I was very afraid; I had never heard of the drug, and there seemed to be frightening side effects possible. I had to sign an ‘informed consent’ for the study, and there was the possibility of a liver biopsy after two years. I started with 3 tablets, and almost immediately my ‘pain ratings’ started to decrease.
I began feeling increasingly better. I joined the exercise class that was offered, and Jody Rapp and later Bev Colbeck, physiotherapists, guided us through routines to move all our affected joints safely. It is such a friendly group; being in touch with other people let me observe how others were managing. One person changed my outlook on life! Janet had had rheumatoid arthritis from childhood; her hands had been operated on. They did not look at all as they would normally. My hands were swollen and sore. “How do you buy gloves” I asked. “Oh, I don’t wear gloves” Janet replied. I reflected deeply and realized that if some things are not possible it is best to ignore them as much as one can.
My journal entry July 8, 1989: “A day of perfect weather, I am much stronger, and after a slow start last week, I am swimming again, not fatigued as long as I don’t try to do too much! But reasonable effort no problem, can plan things again. Hands excellent.” And so it went. I think it took two years for me to experience the full benefit.
This did not mean my arthritis was cured. But the inflammation, malaise, and pain were really well controlled. At first my liver enzymes were a bit elevated, but have been normal for years now. I have blood tests faithfully every few months. The only thing I ever noticed was a bad taste in my mouth on Saturdays and Sundays, the days I take my 6x 2.5 mg. Methotrexate and 5mg Leucovorin, and occasionally a feeling of weakness for a couple of hours, but I do not notice these effects any more.
The progress of the disease has been slowed. I can write, knit, sew, walk, garden and drive. I try to keep well rested.
So many years later I am extremely lucky, I know. I am free of pain and only take a low maintenance dose of Methotrexate. The doctors said I would always need something. With the Pandemic, exercise classes could not take place, but I stubbornly continue with my routine at home with my two pound weights, three times a week. I walk outside as much as possible every day with my walking poles and step around indoors, counting my steps, in bad weather. I am well!
It was in the early years with arthritis that I learned to live one day at a time, a skill that has served me well ever since.
As with many diseases there is always new information, medication and opinions to evaluate. The AWISH newsletter, Joint Effort, is so well presented. With news of our programs and speakers, it includes feature articles on subjects of interest to us all. During Covid-19 days, the AWISH office manager, was able to often email snippets of interest and importance to us.
The newly diagnosed have many more resources open to them today. But I am so grateful when I recall my days of fear and pain. AWISH still offers quality education, information, support and friendship to French and English members on the West Island of Montreal…
