Of Methotrexate and Life: another chapter

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I didn't need the bucket by the bed! I went into the MTX regime full of hope; that I would tolerate it and it would do Good Things for me. It's has been the Gold Standard DMARD for Rheumatoid Arthritis for many years, so if my joint pains are an arthritis perhaps it would help with that as well as the Crohn's.

So how can I put this... it hasn't worked out. Again. Firstly there was the two days each week following the monday night dose that I basically slept through. I was wiped out for those days, it was absolutely horrible. Imagine someone has put a number of levels of indirection between you and the outside world. You see something happen and know there are going to be consequences but you just cannot figure out what it is. A bit like watching a train crash. You know Bad Things are about to happen but you are powerless to stop it. Even once I had ramped up to the full dose of 20mg/week I didn't get used to it and spent much of Tuesday asleep. Wednesdays improved a little but not a great deal. Along with the tiredness and levels of indirection, I still couldn't really think straight the rest of the week.

My fitness plummeted. Walking round the park with the dog became progressively more difficult. Paul could walk faster than me, and I'd have to ask him to slow down, or we take a breather. This was no longer fun. But I resolved to put up with it because the alternatives scare me even more, I really don't want to end up having major abdominal surgery. Or going on to the "biologics". Research on the internet proved I wasn't alone with the fatigue and 'brain fog'.

So I carried on. Then a few weeks ago I realised my asthma was significantly worse on the days following the MTX. So I emailed my GP and asked for advice. The following day I had a chest x-ray looking for methotrexate pnumonitis. And the day after that a consultation with my GP. The x-ray was fine, no problems they could see. So that was a relief. He had me blow into his spirometer machine and that was fine too. At the time. A couple of hours after I was in agony as it had set my back hurting like mad.

The following week I had an interesting experience which ended up with me visiting my GP again and him insisting I was not to leave the building without having had an ECG and the printout checked by him. Hmmm. Too exciting me thinks. We decide to halt the MTX until I see my gastroenterologist. He gave me a 'script for some pain relief patches he'd previously mentioned as the pain from my back was not getting any better.

I'm now a fan of BuTrans patches. Thank you boffins at Napp just down the road.

During this time of Fun and Games I also had the mixed pleasure of seeing a Consultant Rheumatologist. His cursory examination and perfunctory demeanor didn't give me a warm fuzzy feeling. He seemed to jump rapidly to the conclusion my joint pains were nothing at all to do with my Crohn's and were simply "soft tissue". However he did at least suggest an MRI of my back, really just to check for Crohn's related inflammatory changes, however it did show the damage that was causing the acute pain. He suggested a couple of new drugs to try. Another opiate - that made me feel ill, nauseous, and didn't do my guts any good. And etoricoxib, which any amateur pharmacologist will recognise as a COX-2 inhibitor. This really needed to be approved by my Gastroenterologist, and reading up on it, whilst it isn't as stomach un-friendly as some it probably wont do it much good. So we've left that for the time being.

The rheumatologist was from the old-school doctor mold. Short on explanation and irritated by questioning. We wont be seeing him again.

I concluded I needed a christmas pressie to help cheer me up. After a fair bit of looking around, I bought myself a Nikon D60 D-SLR. It's been providing me with many happy hours of fiddling and picture taking so far!

Even early pressies tho couldn't contain my disappointment and frustration at the MTX side effects. It hasn't been much fun.

Tags: crohn's, medical Written 20/11/09 

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