10 Arthur-related Q&As

As my solo departure for a distant land approaches, I’m reminded of the inevitable questions I’m asked when strangers notice the manifestation of my constant companion Arthur: my dodgy hands and feet.

Don’t get me wrong, I’d rather people ask me questions than stare because they don’t want to be intrusive or offend me. I get a bit paranoid when people stare.

So just in case you’re curious, these are the answers I usually give to the 10 questions I’m most asked about my experience with rheumatoid arthritis (RA):

1. Does it hurt/do you get much pain?

Pain has different degrees. I always have some degree of pain, usually minor, which I can ignore. For example, if I let myself think about it, the ball of my foot behind my big toe feels sore where it rests on the carpet but it’s not worth whingeing about. Luckily I don’t have too much pain of the highest degree where it hurts to breathe, move or get out of bed, let alone whinge.

2. Do you take any drugs?

I’m on that many pills and complementary medicines to minimise pain, swelling, stiffness and deformity it’s lucky I don’t rattle when I walk. I’ve been taking a combination of methotrexate, plaquenil, prednisone, arava, folic acid, actonel and somac for quite some time. My rheumatologist and I have discussed switching to biological drugs if/when this combination is no longer effective in controlling my RA.

3. Have you tried alternative medicine/therapies?

Yes. Not long after I was first diagnosed with Juvenile RA in the late ’70s, my parents took me to a specialist in Chinese medicine for an alternative treatment to the 12 dispirin a day prescribed by my GP. They were worried about the serious side effects of taking so many painkillers. Arthur was content on the herbal concoction for a long while but after a serious flare-up, my mum sought help from another GP. In consultation with the closest rheumatologist 500km away, Arthur was brought under control with a combination of steroids and non-steroidal anti-inflammatory drugs.

I know every medicine has side effects but for me the risks are outweighed by reduced pain, swelling, stiffness and deformity. I keep informed about the drugs I’m taking and have regular check ups with my specialist. Some people swear by non-medical treatment but I’d need more proof of its effectiveness before I quit medication that is working well for me.

4. Are you on a special diet?

No. I’ve heard ‘nightshade’ foods such as tomato, potato, eggplant or cucumber can aggravate RA but over the years I’ve had no problem with anything edible. I try to eat healthily from all the food groups. Of course if research proves certain foods are better avoided, I’d change my diet.

My 9-year-old self before being diagnosed with juvenile rheumatoid arthritis.

My 9-year-old self before being diagnosed with juvenile rheumatoid arthritis.

5. Aren’t you a bit young to have arthritis?

Granted I don’t get asked this as much as I used to because I fit the stereotype of a person with arthritis, i.e., older, but this was a common question back in the day. RA isn’t ageist. It can affect anyone from newborns to the elderly.

6. How long have you had rheumatoid?

This usually necessitates a quick mental subtraction of 9 from my current age. So, as of today, it’s 37 years.

7. What’s the difference between rheumatoid arthritis and ‘normal’ arthritis?

There’s no ‘normal’ arthritis because there are more than 100 types. The 2 most common are osteoarthritis and rheumatoid arthritis. Osteoarthritis is caused by joint wear and tear, which weakens cartilage. Rheumatoid arthritis is an autoimmune disease where the body attacks and destroys joint cartilage. Both types have common symptoms, including joint paint, stiffness and swelling.

8. How did you get RA/what causes rheumatoid?

I don’t know how I developed RA. It’s thought RA may be genetic and is triggered by environmental factors such as a virus, infection or smoking. Research into a cause is ongoing, including at the University of Queensland’s Diamantina Institute.

9. Is it hereditary?

Studies have shown RA is likely to be hereditary. But in my case, I’m the only lucky one on either side of the family, in 4 generations anyway, who has RA.

10. Is there a cure?

No. Not yet but with the treatments available nowadays, most people lead a normal life and it’s unusual to see deformities like my dodgy fingers and toes.

Arthur halts dream trip

Cancelling my long-awaited trip to South America because I couldn’t have a yellow fever vaccination made me resent Arthur like I did as a kid who couldn’t roller skate.

It’s not fair that having rheumatoid arthritis (RA) firstly stopped me from rolling around a skating rink and, now, travelling to my dream destination.

Specifically, it’s the immunosuppressant drugs that keep Arthur pacified – arava and methotrexate – that prevent me from having the yellow fever vaccine.

For the vaccine to be effective, I’d need to stop taking the medication 2 weeks before and 2 weeks after vaccination, pretty much ensuring I’d have a flare up.

And, when I’m feeling like I’ve been hit by a Mack truck, there’s a good chance I’d get yellow fever because it’s a live vaccine.

While I could get a certificate to say I couldn’t have the vaccination because of medical reasons, and take my chances in the Amazon, I’m immunocompromised so there’s a good chance I’d succumb to the virus.

Let’s just say my rheumatologist wasn’t very supportive of my travelling anywhere with yellow fever.

Once I stopped crying and moaning about things I couldn’t change, I realised I’d made the rookie mistake of not investigating vaccination requirements before booking an overseas tour.

In my head I’d packed my bags, including the Dencorub in case of aches, light hoodie in case of cold on the plane and Birkis sandals for comfortable walking in the Brazilian heat.

I’d written a reminder note to ask the doctor for extra scripts to stock up medication for the trip and a letter explaining why I was carrying so many prescription drugs overseas.

I’d even dragged my bag down from the top shelf in my cupboard to check it was still light enough to carry and the wheels worked.

But I’d neglected to check vaccination requirements.

That’s something that needs to be done in the early stages of planning – and something I did first before booking my next best adventure holiday…

A Southern Africa safari.