Time for music…

Have had a slight hiccup in my treatment for RA this week, which is frustrating and slightly depressing.

To cut a long story short I have regular bloods because the chemotherapy med (methotrexate) I’m taking is known to sometimes cause liver damage.  A fortnight ago one of the liver function tests shot through the roof (ALT if you’re interested, normal range 20 to 30, I leaped from 22 to 161 in a fortnight, not a great sign).

My new rheumatologist has reviewed these and advised through my GP that I stop taking mtx immediately. 

I had repeat bloods yesterday, and will be having them weekly for the next month.  Depending on the result of these tests DMARD (Disease Modifying Anti Rheumatic Drugs) therapy will be reviewed and I am hoping she will change me onto a new therapy.

In the meantime my body is feeling kinda battered and I’m totally and utterly exhausted, so I’m sleeping a LOT!

I’m not too worried, I’m being monitored very closely and it’s quite common for mtx to do this, usually once the med is removed the liver just repairs itself, which is pretty cool 🙂

However with no anti Rheumatic drugs in my system I’m likely to feel worse and much more pain for the next few weeks.   This is hard to process, I’ve been struggling enough as it is day to day, and I’m kinda fed up with feeling constantly shattered.  I’m also unfortunately suffering from paraesthesia meralgia at the moment, which is numbness & burning pain in my thigh, it’s nerve pain and it burns, but my GP (rightly) doesn’t want to add any additional meds for this until we get my liver back to normal. 

So, with no other choice in the pipeline, one carries on.  I have no other road I can take at the moment, than to rest as much as I need and take care of me.  I have to keep reminding myself this is not time wasted, it is time my body needs to both fight my RA and repair, and I must not feel guilty.  I do feel cheated, I lose time to this and it frustrates me, there are so many things I would love to be doing, but even simply going for a walk is beyond me at the moment, too much pain and too little energy. I’ve got my spinal MRI next week, so hopefully some more answers are coming soon. 

So in between sleeping I’ve been reading a lot, books have always been my refuge and a joy, so time to lose myself in a book is very precious and appreciated. I’ve gone through 15 in the past four weeks, so will need to raid a charity shop again soon for more!

I absolutely keep faith that things will get better, this is just a temporary phase in my illness and on the positive side I’m able to listen to music for hours, I’ve got my mp3 on shuffle and I’ve rediscovered some great tracks today, stuff I’ve not heard in a long time, it’s made me smile and relaxed me too. Isn’t it amazing how your mind retains lyrics? I’m even enjoying singing along to some,  that I can definitely still do 🙂

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