When I started blogging I was careful not to write purely about a specific niche…I like making people chuckle..is that a niche? laughter?
However it would appear that a ‘topic’ has found me, Im not going to call it a niche, because I’m sick of hearing the word. Im yet to find another sufferer of Rheumatoid Arthritis who is in their mid to late thirties.. (ok late thirties) ….and male. That said, Im sure there are loads of them and I haven’t been actively looking for any.
Im certain there are Facebook groups or maybe an app where people find other RA victims and talk about their illness, photographing their deformed joints, so that everyone can see how they are morphing into Frankenstein’s monster, but that’s not really me.
So instead I’ve decided to write a bit of a diary about my experiences…when there is something to write about…I’ll try not to bore you with mundane everyday happenings that make me sound like Dot Cotton or that poor bariatric lady from ‘GPs behind closed doors” who rocks up every week with a different ailment….
The reason I have decided to start writing about this, is today is a fairly big step into the world of Rheumatoid Arthritis.. the day I start taking Methotrexate.
The story up till now
I started to feel unwell about 3 weeks before Christmas, with tiredness really taking over my body, and waking up with achy and stiff joints, especially in my hands and feet. As the days passed, this became progressively worse and I really noticed the struggle when cooking Christmas Dinner, and the difficulty that came with lifting the Turkey into the oven ..which nearly ended up being served in the cat’s bowl when my knees and wrists decided they weren’t playing.
I went to the doctor’s for the 1st time, the day after Boxing Day, this was the 1st time I had visited a Doctor in about 7 years and after a careful examination …(even the cough test…with her cold hands cupped around my manhood), the lovely lady GP referred me to a Rheumatologist.
I decided to take an open referral and make the most of my Private Healthcare…(Im glad I did, as I would probably still be waiting for an appointment now.) When I got home I called the health company and managed to get a referral to see a Rheumatologist at a small Private Hospital within the grounds of Mount Vernon the next evening.
To cut a long story short, after number of blood tests and a couple of consultations, I was diagnosed as having Rheumatoid Arthritis and the doctor started me on an 8 week course of Steroids and Hydroxychloroquine , a disease modifying drug.
In basic terms, Rheumatoid arthritis is an ‘auto immune disease’ whereby your immune system is over-active and starts to attack the fluid in your joints, confusing them with a foreign body. Many people associate the disease with old people, or severe coldness, however the disease is actually genetic, and old people often get osteoarthritis which is when joints crumble due to old age.
The disease -modifying drugs (DMARDS) can take up to 12 weeks to start taking effect, so I am currently in the stage where I am waiting for something to happen, with a nice batch of steroids to take in the meantime to reduce the swelling and stiffness.
I went back for my 4 weekly check up this week and the the doctor told me that the Rheumatoid Factor in my blood had risen. The Private Doctor asked me to come and see him the next day in his ‘NHS capacity’ at Watford General. How ironic…the Doctor who is seeing me privately has referred me back to the NHS to see him…(something to do with the insurance not covering long-term care). So I went back the next day to see the same Doctor so that I could get an NHS prescription for Methotrexate.
I’ve never been a big fan of taking any sort of medication…. I have to be practically screaming in pain before I’ll take a paracetamol. When the Doctor said the words “methotrexate’ everything became a little bit more ‘real’.
Methotrexate is a long term drug that you take weekly. Despite being the most popular and effective treatment for RA, has a large number of side effects, including liver and lung damage, hair loss, frequent nausea and a lowering of the immune system. “Great”, I thought
Before being given the prescription, I had to have a chest x-ray and liver function tests and I will now need to have a blood test every two weeks to monitor my liver. I also have to carry a ‘methotrexate passport’ around with me and take folic acid once a week (the day after).
The biggest concern I have with the medication is, I do like a glass of wine every now and then, however drinking alcohol with this medication, poses a much higher risk of liver damage and the instructions state..I must stay well within the recommended weekly units of alcohol.
Can I have all these units in one day?….What happens when I want to have a good drink? Do I need to give up alcohol altogether… I have so many ‘important questions.
To make matters worse…when I collected my prescription, the nosey old Doris at the pharmacy (you know the ones that think they are medically trained…but are just cashiers with an NVQ in Tixylix), said to me;
” Are you sure this is the right medication? You do know this is a cancer drug?”
Err yes thank you Doris…I have been to a doctor, I didn’t just get hold of a prescription form and decide I would prescribe myself a drug that will mean I can’t drink and I may lose my hair!
The doctor also suggested losing a bit of weight. This I already knew, but it still hurts when you hear it from someone else. With giving up smoking, I have put on a few pounds and upon last inspection, I am getting ‘side-fat’….god help me.
So today I got up extra-early and ingested my new tablets…stepping into the unknown, and Im off to buy myself a fit-bit in the vain attempt to get more active. Dieting is a whole other post…and one that I’ll put off for as long as possible.
Do you or anyone you know, suffer with Rheumatoid Arthritis and taking Methotrexate? How has it affected you? Would love to hear from you.
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