Thursday 23 November 2017

Rheumatoid Arthritis: When things change

It's official. Orencia is failing for me... I've had a month from hell already, and at day 4 of this month's infusion cycle of this last dose, all the side effects have kicked in - headache, now lessening a bit, and snotty sinuses, plus two afternoons completely crashed on the couch - but no noticeable benefits that I can feel. Still in quite extraordinary pain, and at the max level of analgesia that I can take and still drive, hold lucid conversations, and function, albeit minimally...

Saw the rheumatologist on Wednesday, as scheduled. This last three months since I last saw him has been very much a monitoring period, so I don't think he was entirely surprised to see I'd deteriorated, but I do think he was surprised by just how much. So there was no hesitation on his part about moving straight to the conversation about WHICH biologic to try next, once he'd had a good look at my joints which are all noticeably swollen and red - and, as he discovered when I hit the roof, painful! 

The upshot was that an application for Xeljanz has now been sent for approval by the Prescription Benefits Scheme (PBS). There shouldn't be any issue with the actual approval. I just have to hope that there isn't any backlog to hold up processing mine. It should be in my letterbox in two weeks - that's what they always say...but there can be delays sometimes. I can't start taking it until I reach December 21, which is when my next infusion would have been due, but I want it here, and the script filled, ready for that day...because if, as it seems so far, I'm not going to get any benefits from this last Orencia infusion, I'm in for a month that is going to be very, very difficult. 

And then, Xeljanz. It's the first oral biologic to hit the market, and was added to the PBS lists just over two years ago. It's been in use overseas for quite a bit longer - around seven years now, I think. It's a daily tablet - so no more needles, YAY. Great news for a needle-phobe like me. And no more being tied to a monthly hospital admission which, apart from the timetabling of that, also put me into a hospital environment, isn't the best place for someone who's medically immune suppressed. A daily dose also allows some control should there be any drastic side effects - because I can just stop taking it and have them, hopefully, reverse quickly. And that's a concern for me starting any new drug, as history has shown that my body is extraordinarily sensitive to medications, and in the past I've had some severe and unusual side effects from various drugs, some of which have been potentially dangerous. Also on the up side though, is that Xeljaz doesn't - from what I hear anecdotally - tend to contribute to weight gain the way Orencia does, so it might be that I will finally be able to start shedding the kilos that have stacked on in the three years I've been on Orencia. There are frequent reports of gastric upsets with Xeljanz - that's a worry...but for most people, those do subside as the body adjusts to the medication. It can - being oral and being processed via the liver - be a problem for liver function, so that will be monitored, as will my cholesterol levels, because it can also affect those. And right now, my cholesterol is low - so I can eat everyone's cheese - and I don't want that to change because, cheese, people! However, all those worries can just sit in a box until I've got the script and the medication. For now, I just need to get through this next month. 

As I said, my joints are now very painful - constantly. My hands, wrists, feet and ankles are noticeably swollen. I have a running joke with a few friends that relates to a common question we get asked by doctors examining us - 'Can you make a fist?' Well, I can't, but I can make a damned fine set of binoculars...! For those readers who don't have RA or another form of autoimmune arthritis, indulge me for a moment and stop reading, so you can clench your fists tight, and then open them out big enough that if you look through them, you have a clear line of vision. That's how far I can currently close my hands...there's too much swelling for me to make an actual fist. I'm not wearing any of my rings either, because most of them won't go on - those that do won't come off again easily. 

What's the pain like...? It's hard to describe pain to someone else, particular someone who's not in pain. There's a constant dull ache, a hard dull ache...if that makes sense. That's pretty much everywhere...and it's exhausting. I can feel it no matter what I'm doing. As soon as I move, the skewers start... Hot, painful jolts that rip through the joints. I'm walking with care, I'm thinking about how I'm going to sit down, get in or out of the car, get up out of a chair - thinking and planning each step of any large movement. 

This has been going since the infusion I had before the one this week. I'm tired. Desperately tired. Pain is exhausting. I'm not sleeping well. I'm not sleeping enough. I'm a bit stir crazy, because I've not been out much. I've been doing our grocery shopping in small bites rather than one big shop. And yes, I could order online, but the supermarket websites are really clunky and the times I've done that I've inevitably ended up with odd things that aren't the things I thought I ordered... Plus, leaving the house means I also stop and have a coffee, talk to the people in the cafe - human contact and a really normal activity. I need those normal things...

Yesterday though, I went with a friend into the city to meet another friend for lunch. All three of us have autoimmune diseases, so none of us had to put on a 'game face' - because we all get it. My friend who lives locally picked me up and we drove to my nearest railway station and took a train into the city. The place we were meeting is alongside the city station so that made it easy. And we had a fabulous afternoon. We both both crashed early last night and today, we're both absolutely knackered - how the third musketeer pulled up this morning, after having to go on and work last night, we don't know. But, as Dragon Dad astutely mentioned last night when he could see how exhausted I was, we had a great time together, the three of us. Lots of laughter, lots of stories, some good food, and wine, in a very pleasant setting - SO worth the effort and extra pain and exhaustion. 

Small, simple things that are just such normal activities. Normal activities that can start looking like impossible mountains when you're as sick as I currently am. But mountains that CAN be scaled if the right things are put in place, to make them possible, and to not create further fallout afterwards. But normal is good - it reminds me that I'm still here, still me, even when I'm feeling utterly crap and life is beginning to feel small... So, that's the mandate until I can start the new drug - to schedule regular NORMAL social activities when I can so that even if this month is as difficult as the last one has been physically, there's some light, and laughter, and good people, and normality in the face of this crappy disease.
Three arthritic chicks doing lunch!

Really must remember to put on some makeup before I go out socialising next time, and perhaps consult an expert on doing something about what appear to be my non-existent eyebrows!

10 comments:

  1. Another honest and insightful post Karen. Terrible situation you're in right now and as usual there are no quick fixes with inflammatory arthritis. Also Yes it was SO worth it to spend the day with you two legends. I too am not going to give up opportunities for fun and friendship like yesterday! It's much about pacing ourselves to ensure we CAN do stuff like this. Too easy to stay home which is not good for mental well-being. I am hoping with all might that Xeljanz is the next bomb for you! But until then we can make sure we get out and about for good times regardless of what body crap is thrown our way on the day! I love your resilience!
    If your xeljanz and my new leflunamide do their stuff-we are going to be dangerous! As soon as the unmentionable side effects settle that is! Yuk! Never give up and there's always hope things will improve. ❤����

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    1. Thanks so much, Jodie! Haha - if these two new meds work for both of us, yes...Melbourne had better watch out! Thanks for the laugh!!

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  2. My dear friend, I so wish at times like this that I had some medical knowledge to impart. I would do anything to help you. I had a month of the sort of nagging pain you describe... In one arm... Due to a pinched nerve in my neck, which responded to traction. I can barely think about every minute in every joint for years. I hope and pray the new drug turns out to be a miracle for you; it's about time something went your way. Keep yourself safe. You'll be in our thoughts.

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    1. Thanks so much, Jack - and so good to hear from you! Pain is pain - and I remember reading about your shoulder - it's better now?
      This IS pretty crappy though...and each day presents itself as a challenge to get through with grace. Today, my one thing will be to meet Adelaide friends who are in town for their daughter's birthday as well as some work. It will be lovely. I just have to slowly and steadily work through the morning to get myself presentable and ready to head out. So, day by day, and hopefully the new drug will be a wonderful thing for me!
      Love to everyone! xx

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    2. Pretty much better. Cervical traction loosened it up to where the pain is no longer constant, and when it does come back it's pretty minor. Hoping and praying your new med does the same for you!

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    3. Oh that is good to hear! And presumably, traction can be repeated if it really starts bothering you again. Lovely to hear some good news, my friend, and that you're more comfortable!

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  3. I recall when Orenica failed me, and how awful it was. I hope you next medication, Xeljanz or another one if it does not work out. I hope you get quick approval.

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    1. Thanks so much, Rick! It all takes so long...that's the real issue, isn't it? Months of increasing pain to be sure that IS what's happening, and then the wait for the approval, and I hear that Xeljanz is one that can take a while to kick in... So, I'm putting my head down for the long haul...

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  4. I'm sorry to be so late in reading your blog. The end of this year has been exhausting. I'm also sorry that you have been suffering badly. I am expecting that you have been able to start your new biologic med and hope that it is going as smoothly as possible. I hate that early period of "the unknown" with any new med; not knowing exactly how the body will tolerate it or react. I'm hoping that you can get some rest over the New Year holiday period and ease into life again, with (fingers crossed) relief from the symptoms that have been interfering with everything this year. Healing hugs xx

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    1. Hi Jodie - it's all good...no requirement that anyone gets to my blog in the first five minutes it's out there!
      I'm a week in on the new drug. It gives me a nice little headache with every dose - *sigh* - but I'm finding if I add a couple of panadol into the morning and night mix (it's a twice daily tablet...I thought it was only one!) that takes quite a bit of the edge off. Too early to know if it's going to work for me - two to four weeks is the average time... Still utterly knackered. Dragon Dad managed to catch flu - real flu - and has been down and out since ten days before Christmas. Back to the doc this evening, because I suspect possible pneumonia at this stage, as he's been sporadically running temps again and is struggling to breathe at times. So, that meant ridiculous amounts of extra running around - because while we don't keep Christmas, there were still all the usual things to do, as well as covering errands and tasks he'd usually manage... Met one of my friends from the photo today for a coffee and even she said I looked tired, and that's not something we usually comment on with each other...
      I hope you're going OK. I've got to catch up on blogs - other people's - and your comment here reminds me that I'd intended to write a post before the end of the year. Best think about that too! TOO MUCH TO DO!!!!
      All the best to you and yours, and for the New Year. Thank you for being a consistent presence here in Dragon Mother land! xx

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