Good news, bad news and a diagnosis, sort of…

22 June 2017

It’s been a tough couple of months but our living in limbo came to a resounding halt this evening when Commando visited the Consultant Rheumatologist. There was bad news, confusing news and good news. The blood test results were in and there were answers, even if they weren’t exactly conclusive. There were also solutions. Neither was quite what we wanted to hear but knowledge is power I suppose.

Previous blood tests (ESR and CRP, for the medically inclined) told us there was inflammation. This was already blindingly obvious. What we didn’t know was what was causing it. There were a multitude of possibilities. The best of these was a reaction to a virus or infection. Commando had had both as far as we could tell. There was also the possibility of Lyme disease. He didn’t recall being bitten by a tick but his regular off road running and the fact that Hampshire is a Lyme hotspot made it a possibility. All the symptoms fit. The ELSA test for Lyme was inconclusive, possibly because of the antibiotics used for his tooth abscess. It is not the most accurate of tests at the best of times and antibiotic treatment makes it less so. The sudden pain and fever he had when the antibiotics stopped could have been a Herxheimer Reaction, cause by dead bugs.  Finally, there was Rheumatoid Arthritis.

The tests we were waiting for now were the Western Blot test for Lyme and the CCP test to show if he had auto-antibodies indicative of Rheumatoid Arthritis. We were hoping both were negative, especially the last one. The Rheumatologist is a lovely chap but there was no disguising the bad news. The CCP test was positive. It is not a definitive test but, on the balance of probability given the symptoms, he thought Commando had Rheumatoid Arthritis. The Western Blot test was inconclusive. One part was positive, the other negative. It was still possible he had Lyme disease. In fact it could have been this that set the Rheumatoid wheels in motion.

RA is a progressive disease, causing irreversible damage to joints. It cannot be cured but it can be controlled and brought into remission. If it is RA, and no one can say with one hundred percent certainty at this stage, there is no time to waste. His symptoms are certainly rheumatic in nature, although it may still be a reaction rather than RA. Either way, the treatment is the same. The most important thing is to get it under control quickly and minimise the damage. The Rheumatologist was reassuringly confident that a cocktail of horrible drugs should do the trick. There might be flare ups in the future but we’d deal with them if and when they happened.

So we left the hospital with a prescription for two disease-modifying anti-rheumatic drugs (DMARDs), methotrexate (also used as a chemotherapy drug) and hydroxychloroquine (also used to treat malaria). Along with these there was folic acid, to be taken alongside the methotrexate, and doxycycline, an antibiotic for Lyme disease, just in case. The DMARDs are not fast acting. They can take up to three months to have a full effect. They can also have some unpleasant side effects. Luckily, the steroid injection is still working for now. X-rays were also ordered to asses any damage so far, plus weekly blood tests to monitor all these meds.

“What about running?” Commando asked as we headed for the door clutching the prescription and reeling slightly under the weight of information.
“Exercise is good,” the Rheumatologist said. “As long as you are not in pain, keep on running. Use it or lose it. But no marathons. Stick to half marathons if you must.”

A positive mental attitude is half the battle with any life changing event. Running is what keeps Commando positive. It is quite possible he will now rattle when he runs because of all the pills. At least the sound will drown out the noise of our world crashing and burning around us.

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16 thoughts on “Good news, bad news and a diagnosis, sort of…”

    1. The drugs, horrible as they are, seem to be working so far. They have made great strides in the treatment of RA in recent years so we are hopeful.

  1. Oh no! That is bad news. But at least there’s an almost-definite-perhaps diagnosis and better to be on treatment with the prospect of improvement, than suffering without. Poor Commando, best wishes to both of you.

    1. The treatment is very aggressive but the Rheumatologist is very positive and believes he can get him into remission. Fingers crossed.

    1. They have made huge progress in the treatment in recent years and we are hopeful of getting it into remission quickly with minimal permanent damage. Fingers crossed.

  2. The tenacity I’ve seen in Commando (and you!) all these months and years will see you through this test. I’m glad he is adding folic acid to the medical regimen.

    You have a diagnosis now and courage to fight the disease. You can count on your readers here to be rooting for you both, Marie!

    1. Thank you Marian. The folic acid is part of the treatment because it counteracts the side effects of the methotrexate. So far these have been mainly a little nausea and some tiredness. I’ve also been researching anti inflammatory foods and have cut sugar out of our diet. I figure we should hit it on all sides as hard as we can.

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