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Posts Tagged ‘Orencia’

I don’t know where this week has gone and can’t believe I’ve neglected the blog for so long, it’s not as if I have nothing to write about.

To update you on the Still’s situation I need to go back to mid-September and my last Orencia infusion, which was quite literally my last.  My blood test results weren’t looking any better at all and the fact that my knees were swelling for the first time in ten years seemed to prove a point; so, both myself and my rheumy came to the conclusion that Orencia wasn’t effective at treating the majority of my symptoms and never would be. Instead, he decided to put things in motion to start Tocilizumab (RoActemra) at my next appointment if the funding application went through fast enough.

I’m pleased to say that he emailed me at the beginning of the week to let me know that my local PCT has agreed to fund the switch to Tocilizumab and I shall be having my first infusion on Thursday 13th October, on the same ward as I’d been going for the Orencia. I’ve heard a lot of good things about this drug and so I’m trying to keep optimistic, although it’s hard to when I haven’t responded typically in the past.

My joints were in a pretty bad state when I saw him in September too, I was finding it difficult to walk/dress etc and needed a few cortisone injections – there were plenty of joints to choose from but in the end I went with my locked left elbow (hoping that some would travel to the shoulder/wrist) and my right knee (hoping it would help the hip too), which I needed to be up to walking the streets of New York. Thankfully, the injections and a short boost in prednisolone did the trick and there was only one time that I struggled on the trip.

Even the time difference didn’t send things flaring, which I had half expected because I know what a major role my sleep pattern plays in keeping me ‘well’. Usually, I only have to go to bed a few hours later and I suffer the next day – I can’t sleep in as that makes me feel rotten, but even if I did I wouldn’t feel any better.  But I managed to say awake for almost 24 hours on both journeys – must have been the steroid rush.

Since being home and reducing my Prednisolone, the aches and pains have slowly started to creep back in but I’m still doing better than I was last month and have been trying to make the most of it by sorting out a few things around the house.  I guess it makes things easier knowing that I’ll be trying a different approach next week.

I’ll leave it there for now and promise not to leave it as long in future – there is so much more I need to write about, not to mention catching up on my articles!

L

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The past couple of days have been quite bad Still’s-wise; today is slightly better but I think that’s down to me switching back to my regular Tramadol rather than the Prolonged Release form I had been trying out.  That didn’t seem to keep the pain away enough at all.

Since waking up on Wednesday, there has been a lot of joint involvement – my left arm joints suddenly felt a lot worse, with the elbow even more restricted than usual, both knees felt painful, tight and stiff as if there was fluid in the joint (there may be, just not as severe as when I was a teenager and they swelled up like footballs), plus my right hip is extremely wince-worthy painful, meaning I can’t lift that leg on its own and have to take stairs etc. one step at a time.

It really isn’t looking promising for the Orencia / Methotrexate combination. I’ve now had two doses of the 15mg Mtx and that is the only thing to have changed – funny then, that I feel worse. Still extremely tired and so I’m giving myself rests in the afternoon and going to bed earlier again; I figured that my body was working over time to heal this open wound after all, so I will listen to it.  Hopefully, after my infusion and Rheumy visit on Thursday (expecting to need some joint injections), I’ll have much more energy for New York. Besides, I’m so excited that I’m sure I will run on adrenaline alone.

I’m no longer too concerned about my wound and travelling.  The nurse was very pleased with the progress it had made and reduced my clinic appointments to twice a week. The rest of the time I am to change the dressings myself and she has given me everything I need to do so. I’m getting used to it now and can even remove and replace the packing myself, it’s not too bad now I know what I’m facing. Plus the wound itself has improved so much that it is no longer the bottomless pit that it seemed at first; it’s amazing how the body works to heal itself.

I’m surprised that it hasn’t ever really been painful – of all the things that are going on with me at the moment, that is the least of my pains.  The Hidradenitis itself is more painful, especially this second site in my left groin. It is nothing to look at really, just two pin-prick sized holes where it has channelled to the surface, but I nearly jumped through the roof when they swabbed it the other day, whereas I haven’t flinched at all with them poking and prodding the open wound.  Obviously I’d love for it to clear up itself, but at the moment I’m okay with the possibility of needing the surgery again, but I would like to get an idea of the scarring first.

Anyway, that’s everything for now. There isn’t much I can do until I see my Rheumy really, except maybe ask the GP about some different painkillers again.  Looks like I’m back to waiting around for things to improve; it just can’t happen fast enough.

L

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My line manager phoned me earlier. She said that it had been overlooked that the headteacher had requested an appointment with me for tomorrow – for my Stage 2 Capability hearing.  Since I hadn’t been informed, I wasn’t prepared; plus the HR representative said that I would need another assessment by occupational health beforehand, (just to make sure I’m not pulling a fast one).  The end result being that there is no meeting tomorrow but it is in the pipeline.

She also asked how I was doing and so I told her that things still aren’t great and that the new medication hasn’t been effective as yet.  I’ve no idea what she makes of it all, but I feel so frustrated to be saying the same things over and over to them, guilty almost, as if I should be giving them better news. It must be difficult for them to get their heads around an illness that the doctors can’t immediately treat successfully, to understand that it is a process of trial and error that can take a huge amount of time.

Sometimes, I wish I could tell them how frustrating it is for me to have to go through it, that I’m not just sat at home enjoying the break, but am in pain every day and so very limited in the things that I can do.  I know there will be people questioning it; in over six months, nobody other than my line manager and the headteacher has been in touch; my supposed work ‘mates’ have all but forgotten me, annoyed at the fact that I haven’t returned sooner.

At the last hearing, things had seemed promising and I was looking forward to starting the Orencia with the hope of returning to work in mid-September / October.  All those weeks have past and still no improvement; instead, it’s likely that I’m facing another wait to decide on a new approach, apply for treatment funding, and further uncertainty surrounding the effectiveness of whatever approach we choose.

I didn’t ask for any of this, nor can I change it. I approached Orencia with an open mind, feeling positive; I have followed every instruction from my consultant, even those that I wasn’t keen on. Yet I feel I am in the wrong, that I am being judged negatively – these are disciplinary hearings after all.

I’m almost hoping that they do give up on me and end my contract, just so that I don’t have this niggling guilt in the back of my mind.  I know that I’ll bounce back and find something else once we do get it right.

L

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It’s been almost a week since I doubled my Methotrexate dose from 7.5mg to 15mg.  I was expecting that maybe I’d feel a bit queasy again like I did when I first started it, or perhaps even worse, but I haven’t noticed any difference in that respect. Instead, I am just ever so sleepy! Even when I have been very unwell during this current flare, I have managed to stay awake all day – with the fatigue presenting as a body-wide weakness.  However, for the past few days, I have struggled to keep my eyes open once it gets to lunchtime and I just want to sleep. Trying to stay awake makes them burn and there’s no point anyway, because my brain just can’t focus on anything, which is why I haven’t managed to post as often on here.

Losing part of my day to sleep is bad enough but the ‘brain fog’ (as people call it), is even more frustrating. I’ve mentioned before how words just seem to drop out of my head and how I make silly mistakes like pouring water from the kettle over my cereal and find that I’ve put the milk away in the dishwasher… well yesterday it took a more worrying turn, when I forgot to switch the gas hob off and left it burning for about 4 hours before I noticed. Thankfully it remained lit or I could have had a major gas leak.

I’m hoping that the shock of forgetting something so vital will make me extra vigilant now, so that it won’t happen again. Also, that the ‘brain fog’ clears up after a time, as the nausea did.  But I can’t help but feel that the Methotrexate is having the opposite effect to what we hoped.  When I first started Orencia I felt like a different person, full of energy, even if the inflammation was still there; then I started on a small dose of Methotrexate and lost some of that energy and feel good factor; now, after doubling the Methotrexate,  I feel sapped of all energy. It makes me wonder how things would be if I stopped taking it and just had the Orencia – would I feel as good as I did at first?

I know it’s not the end of the world, but I’ve always said that fatigue is (most of the time) more difficult to deal with than pain – you can take pain medication to provide some relief with that, but there is nothing for fatigue. It just knocks you for six and stops you in your tracks, leaving you with no choice but to put everything on hold.

And with the New York trip around the corner, I just can’t let that happen.

For now, I’m just going to do as my body tells me and hope it’s enough to pull myself out of this sleep-hole, I guess it is working overtime to heal right now too.

Sweet dreams,

L

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Apologies if this post is a bit rough around the edges, but I wrote most of it post-surgery and I’m feeling rough around the edges too!

Infusion days always feel full of hope at first, that today could be the day that things turn around. We arrived on the ward at the normal time and had the usual pre-infusion checks – Blood test, BP, Pulse, Temp etc.  The nurse asked about any new symptoms / pains, so I had to mention the stitch-like pain beneath my ribcage, even though it could disappear as fast as it came – there have been no obvious side effects from the Orencia, thankfully.  With the cannula fitted easily, it was back to waiting for the test results and the go ahead for pharmacy to mix the infusion.

My rheumatologist came to see me a couple of hours later and I filled him in on how things had been since the last infusion – to cut it short, that I’d been having too many days when I couldn’t even get out of bed on my own and so had increased my Prednisolone to 20mg again, and that I’d been more stable since but still not brilliant.  My blood test results told the same story, I was still anaemic with a haemoglobin of 8.3, but there was a slight improvement in my inflammation markers, with my CRP down from 112 to 80ish, thanks to the extra steroid.

For the first time since starting Orencia, I am beginning to lose my enthusiasm for it and my rheumy pretty much admitted the same thing.  We both want to give it a full opportunity to work though, so are going to stick with the infusions a bit longer. I mentioned that it has definitely helped with the fatigue, which is the difference that I noticed straight away and what got my hopes up initially, but it just hasn’t reached the joints yet and I’m not sure if it will.

The infusion itself went fine, no line resistance thanks to the vein having time to recover and sticking to those guidelines too of course! I didn’t feel the rush I had felt after my first few infusions but then I’d had a late night and was pretty shattered anyway.  I’m trying not to read too much into it, but it is getting harder to believe things could turn around at this point.  I just don’t want to be negative but at the same time I need to be realistic.

My next infusion is in three weeks, rather than four, to fit in with my trip to New York, and in the mean time I need to double the dose of Methotrexate to 15mg – ugh.  I am definitely not enthusiastic about that but I’m willing to give it a go if it gives the Orencia a better chance.  It is still smaller than the dose I was on all those years ago; I just hope I don’t get hit with terrible nausea when things have been so good so far – I don’t want to be sick on the plane or in New York(or anywhere for that matter!)

Speaking of New York, my rheumy seemed really pleased that I was going and said it was one of his favourite places.  We made a plan to try and make sure I will be as well as possible for going, including the early infusion and then a couple of joint injections to give me some relief/movement in this left arm, and maybe another increase in the Prednisolone.  I felt really pleased that he was supporting me, because it reaffirms that I can’t let the Still’s Disease get in the way of enjoying my life.

So for now, I’m just trying to take it a day at a time and not look too far ahead. Ce sera sera.

L

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I’ve got a busy few days ahead so not sure when I’ll be able to post updates.

Firstly, tomorrow I’m going for my fourth Orencia / Abatacept infusion in Manchester, which means another blood test and hopefully a visit from my rheumy.  I’m interested to see what the results will show. I’m not really sure what to expect from them, as I’ve been up and down on a  physical rollercoaster since the last ones four weeks ago – just before I ended up in hospital.  If they’re better, then great but are they better because of the Orencia or because of the Prednisolone? If worse, well where does that leave me?

Results aside, I do feel better in some ways – like I’ve said before, I have more energy most of the time and I am up and about, able to do chores and things nearly every day. But I am also in pain every day, in numerous joints, especially my left shoulder, elbow, wrist and fingers.  Most days I can barely move this arm; the elbow has been locked since May and is showing no signs of improvement, even when I increase the Prednisolone.  I guess I’ve just become accustomed to the fact that it hurts and doesn’t work properly, although I know that’s not right.

Hopefully, I’ll get more answers and a plan of action tomorrow.

On Friday I’m having minor surgery on my hidrandenitis abscess/gland/tracts/scar tissue – all of which is hopefully going to be removed and then stitched back up. I’m sure he said it would be stitched back up; sometimes they leave the wound open to heal from the inside but I want those stitches… I’m still feeling a bit nervous about it all, I guess it’s unknown territory for me.  What I have to remind myself of is all the misery it’s caused, having to put up with the damn thing for over a year now, and how sore and uncomfortable I’ve been every day because of it. Hopefully, this will be a means to an end of all that.

I’ll be glad when it’s all over and I can spend the weekend relaxing.  We should actually be celebrating, because Friday marks four years with my wonderful boyfriend, but I guess that will have to be put on hold unless he has something up his sleeve…

For now, I’m just making the most of time at home and looking forward to film night with my friend – who is bringing Zoo Keeper and Mr Popper’s Penguins round later.

You’re never too old for Penguins..

L

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Things have been pretty stable since I increased the Prednisolone again a couple of weeks ago, I still have some pain and general wonkiness but it has been manageable.  So when my amazingly fantastic friend suggested an outing to the zoo yesterday, I didn’t even hesitate – I mean, Lions and Tigers and Bears…oh my!

We had a brilliant day, seeing all the animals (my favourites being the Lions and Red Panda  – the cute little fella in the picture ^), but the best thing was that I managed to keep up with all the walking, and we did quite a bit of that. In fact, I almost forgot about all the Still’s stuff and just felt like my ‘usual’ self.  Hopefully this is a good sign of things to come – it is only a month until we go to New York now after all 🙂

I have been a little extra tired and sore today, but that’s the price we have to pay sometimes and it’ll pass. The HS has been flaring up something rotten and I seem to be glued to hot compresses, but at least this time next week it should all be sorted out – if the surgery does go ahead.  It’s due to be another busy week actually, with my fourth infusion on the Thursday too. I’m hoping to see some improvement in the blood test results this time, to reflect how I feel, but once again  I wonder how will we know if it’s the Orencia or Prednisolone?

A conversation with my amazingly fantastic friend, at the zoo yesterday, got me wondering what animal I’d like to be / come back as in the ‘next life’ …it would have to be something fast and energetic, to make up for the lack of these qualities now – so maybe a little monkey that swings through the trees, or a sea lion, which look so carefree gliding through the water!

Any ideas?

L

Ps. Ketoprofen has now been added to the Treatment Section; next – Prednisolone!

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